The POTS ran away with my SPOONS!

New blog.

2010-09-20T11:26:00.000-07:00

I've migrated to a new blog. It's not blogger that's going wrong it's something to do with my netbook, but I haven't the time, energy or nouse (brain-power) to figure it out so I've moved- I've network-blogged it through my facebook account so those of you who followed me through that should find me, but if you're a reader who doesn't know me through facebook just leave me a comment so I know who you are and I'll find a way to pass on the link to you privately- since there are people from my past who have this link so I think it best now I'm moving, to start fresh and only give the link out to people who actually care about me and are my friends. Or just send a message to Laura Dysauto on facebook and I'll reply with the link- you'll know it's me coz I have a saucepan on my head. LOL.

My computer is being about as dysfunctional as my body!

2010-09-19T08:03:00.000-07:00

It is pissing me off.

The earlier entry was posted when I didn't have my camera card handy, so I wanted to add a photo to it. However, through firefox, the computer will not load my blog at all, it just says 'waiting for google analytics'. Through google chrome, the box appears for a split second and then I have to pause it very quickly, otherwise it just continues on to a blank, white page! But, when I've paused it, it doesn't always show the photo upload box, and when it has, the photo hasn't been uploaded!!! GRRRR!

A very busy weekend and a nasty cough!

2010-09-19T02:22:00.000-07:00

Last weekend was very busy. Too busy, really. I was stressed about it all week because of having to come off the florinef. Worrying how I could cope with being so busy and not having my medication to help.

Friday we showed my bfs Mum what we'd done with the place and then went carpet shopping. We picked 8 samples which we then narrowed down to 3, then narrowed down to 2 when I walked across them and discovered one was more 'rough'. We then eventually decided upon the carpet all 3 of us had liked in the shop because it was a nice warm colour and had flecks that matched the new fireplace.

Friday night, we went to the pub to meet some friends, my bf left early and I went out dancing with my friend- the place we usually go to (80s music) had changed the night and no longer do the 80s night (gutted!) so we went to a 90s night instead.

I had a terrible night when I got back to my bfs though. I had an episode of tachycardia that just wouldn't stop, despite the fact I was laying down. In the end I took a beta blocker (which I'd started carrying around with me just in case, since beginning to wean off florinef) and even that took a while before it slowed, so I happened to still be awake at 8am when my bf left to go golfing. Jeeze!

In the day after he got back we just sat in the garden as it was thankfully nice and warm. We had a look through the Argos catalogue and talked about bathroom cabinets lol.

I went to bed for a bit around 4pm as I felt terrible, but couldn't sleep. Got ready for a family do bfs Auntie was throwing but was so tired I didn't feel very sociable and we left early. Unfortunately, I had another awful night. I fell to sleep but my bf woke me in night rolling on me and fidgeting. Then as I was trying to get back to sleep he sneezed and scared me to death by shouting CHOOOOOO! really loud. So then I was PISSED OFF. So we had a fight, he accused me of being nasty, and all of it added to my tachycardia and then I got the tremors really bad and was laying in bed shaking and THAT took ages to calm down. ugh!

So, come Sunday I was EXHAUSTED. I got up at 6.30am and got all my stuff together and was ready to leave by the time my bf got up at 8. I left at 8.15 for my first reflexology class- which was fantastic! Really interesting, tutor brilliant, met some great people. Shame I was sooo tired and started with a sore throat from all the missed sleep.

Monday I had to get up early to go to Scotland! The train journey up there was great, it seemed to fly by, my Uncle picked us up at the station and took us straight to the bungalow, where he and my Auntie Sandra were babysitting I. It was an awful, lashing it down with rain day, but I was tired from travelling so it was nice to just sit in the conservatory and meet the little relatives! We had a nice lunch in the dining room of home made pepper (I think it was) soup. K brought O over a couple of hours later and it was soooo cute how excited I was to see him. They are both so adorable.

Mum and I went to our hotel to unpack and had our evening meal there, then a walk along the beach as it had stopped raining. I wasn't feeling great with a sore throat so had taken TCP with me to gargle. When we got back to the hotel, KB was meeting us in the bar so I put some smarter clothes on and we went down and I had hot toddys for my sore throat/cold thing. 3 in all because they were so nice! Mum and KB had a nice chat and I added the odd thing in here and there. Then finally we went to bed. Oh, and it was my first day not taking a tablet because, as I was coming down with something, I decided I'd need my full immunity (or as full as it could be after being on tablets that suppress it somewhat) and I managed to climb the 3 flights of stairs to the room 3 times at least that day!!

On Tuesday we got up early as breakfast had to be finished by 8.30am (how cruel!) and after a "Scottish breakfast" (which is the same as an English breakfast and for me, minus black pudding, tomatoes and toast) me and my Mum climbed the Binn!!!! It was sooo scary near the top, because it was REALLY windy, and there wasn't a fence to stop you toppling off the edge!!!! And I get vertigo so add to that the strong gusting wind and the fact it had rained all day the day before so the very thin path was very slippy, and I was terrified. Practically crawling along clutching at the long grasses getting nettled and thistled and brambled in the process!!! But I didn't want to turn back even though I was so scared, and the end result was worth it!

A PHOTO SHOULD BE HERE BUT I CAN'T GET ONE TO ULPOAD BECAUSE MY COMPUTER IS BEING A TWAT!

Although, here's a funny story. The day before, my camera battery had been running out, so I only managed to take 3 photos and it stopped! Gutted!!!! After all that effort!!!! BUT on the way back down, after being even more gutted about how the light was shining perfectly on the sea and lighting up 2 chimneys over towards Edinburgh, I thought to myself (after about 15 minutes of being mad with myself for not thinking to bring the spare battery, and taking CRAP photos on my phone just to have some though feeling so miffed they wouldn't be even half as good as I could have taken with my camera)- this is the coat I always wear when out walking with Lee. In which I often carry a spare battery- so maybe it's in my pocket... and the funniest thing is, it just hadn't occurred to me despite the fact I KNEW that it was in there- that I keep the battery in the camera case- and I had already found the camera case in my coat pocket back at the hotel!!! so, this time, when I was actually THINKING ABOUT IT I touched the camera case and thought... maybe the battery is in here... AND IT WAS!!! But then I thought, oh no, it probably needs charging up but miracle of miracles IT DIDNT! FULLY CHARGED BABY! So I yelled my Mum and we climbed back up the little bit we'd come down and I got my pictures. :-) Yayness!

After this, we went back down and went to the bungalow where we had a nice lunch of cold chicken, ham and crackers. Then we went over to KB's flat to meet K and took O to the beach where he had a great time and really touched my heart by warming to me and coming up to me and taking my hand because he wanted to walk with me and to show me things. ahhh.

I also encouraged him to chase some seagulls- I could tell he'd never done it before and he was a little shy and hesitant at first but soon got into it and seemed to find it fun. After a little play on the playground we put him back in his buggy and took him to a little coffee shop where we had hot drinks. Then he captured my heart again by wanting my water bottle and then when I said 'it's Laura's he picked up his and looked at me and wanted to drink at the same time as me, so when I picked up mine and drank he would drink his and then smile all happy. Then when Auntie lifted him down he came over to me and got my hand and led me outside because he wanted to watch the cars and lorries go by on the road. There was a little table outside so I sat down on a chair with him on my knee and again, it felt so lovely. I miss having little ones on my lap. This is another reason I think working in a nursery will do me good. Although me and my bf decided not to have our own children, little ones do warm my heart and lift my emotions so working with them would be the best of both worlds for me- I can love them but not have the responsibility of having to raise them!

After the coffee shop my Grandma and Auntie took O home and me and Mum went down the high street to get food. I got a starter- chicken satay- from a chinese and Mum got a sausage roll and crisps from the co-op. We ate it in the hotel room while watching Neighbours. Which reminds me of an anecdote I missed- when we first arrived, the TV remote wasn't working. I asked for new batteries but the bloke who came to sort it out for us tried it and it worked! But then I went to turn TV up and it went DOWN instead of up and then the remote wouldn't work. So I went and asked for batteries again. Well, when we were at tea the bloke came over and was so patronising and said 'you see on this remote control- these buttons here with a plus and a minus? You press plus to change the volume up and minus to go down." LIKE AS IF WE DIDN'T KNOW THAT?! I snapped at him saying something like "We do know how to use a remote control and that is what I did but it did not work!" so he changed the remote and the batteries. Then everything was working fine, what a surprise!

Right, so after Neighbours we went over to the bungalow and Uncle drove us to M and P's to see baby I for the last time during this trip. She was so cute. Kept saying 'bow wow- bow wow!' especially after P put her to bed and she wanted to come back and be sociable with us- she was shouting it from her cot- it was soooo cute.
We went back and Mum and I read mags in the hotel before bed.

On Wednesday we went to the bungalow in the morning and Uncle dropped us off at the swimming baths where we went to watch O, then walked back- K took him home and the rest of us went back to the bungalow to sit in the conservatory- I had a snooze because my cold was making me feel soooo tired and my glands were swollen and hurting like they've never hurt before!!! About 12 we headed off to the town to the pottery cafe where me and Uncle had a nice jacket spud with tuna mayo and Auntie and Grandma had carrot and orange soup (Grandma let me taste hers, it was yummy!) and Mum had a scone. Then we walked along high street up and back down, then Uncle took us to the station and we travelled home.

Thursday and Friday I cancelled my clients as my 'cold' turned into a dreadful cough. Friday night I went to B's with M- 2 nice friends I made when I was a student doing my nursery placement last year- and had good fun and a good giggle, left at 9 due to not being well enough to go down town too, got chips from the chippy on way back... then today I have stayed home and not gone to my bf's so I can rest and get better for my birthday! It's been quite nice. Was a bit bored in the afternoon for a while after I'd visited Grandma and had a nice snooze on conny settee- but Mum rang me (yes rang me lol) to say Neighbours omnibus was on so we could watch the bits we missed when travelling home and when I was out last night. So laying on the bed watching that in her room was nice. Then we had tea and later watched X Factor together, I've had a nice hot bath and washed my hair, and tomorrow will be reading mags in conny how old Sunday mornings used to be- and having Sunday lunch at Grandma's. It's really, really nice being at home! I've missed the lazy, relaxed-ness of it, since with my bf things are always 'on the go'. Although if I did it every weekend I'd be bored and fed up, but it's lovely while convalescing.

Blogging still no simple task! But I'm doing really good today!

2010-09-07T13:58:00.000-07:00

It is so bizarre I don't know WHAT is going on! Now, when I press new post, I get the box you post in appear for a second, then it disappears into a white page! In order to be able to write in it, I have refresh the page and then VERY QUICKLY move my cursor to where the stop X is on google chrome- which just so happens to be at the opposite side of the page and only appears for a few moments. It took me three attempts just now but I have my page. WHY it is doing this though, I do not know.

Today I felt better than I have felt in AGES. More like my 'old self'. The self I am forgetting in all honesty. Because I am getting so used to feeling ill, and it being my normality, that when a day like today happens, I realise how bad I'm used to feeling and how, because it's my new baseline, I don't really see it as bad anymore. It's bad compared to what normal used to be, but compared to how bad I can sometimes feel, it's okay. If that makes sense!

So yeah, today- peculiar! I had a terrible night! I had tinnitus worse than ever, I was too hot, my neck was killing me, my lower back was aching into my siatic nerve, I just could not get comfy! So I was awake for hours until I took a piriton (which I usually take every night as they help me sleep more restfully but I didn't bother last night as I felt sooo tired I didn't feel like I needed it, but then as soon as I lay down I was like wide awake!).
So, after that I was expecting to feel rubbish but by mid-afternoon (mornings are still entirely meh) I actually felt clearer in my head. I hadn't realised how foggy and fuzzy I constantly feel in my brain until I felt it today like this fuzz had been lifted away, allowing me some clarity. And then what happened was I became what I call 'chirpier'. Talking fast and animatedly instead of being a bit like a robot, only replying when I have to, only using short sentences, because talking is just too much effort. It's rotten how this disorder changes you when you think about it! I was always very 'bubbly' before it and whilst I don't think anyone would describe me as dull, I certainly feel like it has vastly dulled my personality due to the mental fuzz and constant unrelenting fatigue.

I don't know what it was that caused me to have such clarity after such a terrible night's sleep. I don't know whether an 8th of a 50mg atenolol could do such a thing. I'm not taking one tonight anyway and will see how I feel tomorrow. I am HOPING it's the liquorice root. I did notice when I first started taking it that I had a dramatic improvement in many symptoms, but sadly it didn't last and I got frustrated and went back to the Drs for more meds. That's when I got the florinef and so I stopped taking the liquorice. Now, I wouldn't expect to go from feeling crap most of the time to feeling good all the time, but if indeed it is the liquorice root that gave me this improvement, maybe I'll be able to stay off the florinef and use that instead for as long as it works. If at all possible, I prefer using herbal treatments as I just feel safer with them, due to them tending to have less side effects.

I am also taking motherwort for palpitations, it's great for those. It has the added side effect of making me sleepy in a nice, relaxed sort of hazy way, so I tend to take it at night only, but I'll add in an extra dosage in the day if I'm having any particularly bothersome tachy episodes.

If I can manage my symptoms with just these and the occasional small dose of beta blocker and experience more days like today and more times of feeling like my 'old self' I will be over the moon!

ARRRGGGH!

2010-09-06T13:47:00.000-07:00

I am STRESSED!

One thing, bizarre things keep happening with my computer. Like I said in the previous entry, I keep being unable to post to this blog. I've just managed to do so via google chrome, but try to do it using firefox and it just won't have it. I press 'new post' and it directs me but never loads the page, saying 'Transfering data from google analytics...' and the swirly things goes around and around, meanwhile... F ALL HAPPENS!!!!

Also, when I do a google search (something I happen to do a lot more than I realised, but have since realised since it's become such a bugger of a problem) instead of taking me nicely and properly to the page I click on in the search results, I randomly get redirected to other bizarre search engines I'd never before heard of or used- or random porn sites or just any old sites absolutely nothing to do with what I was searching for.

Okay, so since writing that I just tried a google search and that didn't happen, so maybe running spybot search and destroy and doing a restart has sorted out that problem, but the problem with my blog is still ongoing- I cannot write in it from firefox, which is my default browser, because whatever the data is from google analytics, it will not be transfered!

Other things stressing me out:

Being too busy! Okay, I like being busy, but I'm also stressing/worrying because my business is running over into October and this is the time when I start having thoughts of impending doom because it's usually a time when I crash and fatigue takes over my LIFE even more so than it generally has already. Added to that, I have also got to stop my florinef (weaning off it over the next 2 weeks) so that I can have my injections for Peru (can't have live vaccines whilst on it) and also stay off it during the trip (immunosuppression was not recommended by my Dr when I am trekking through the Peruvian jungle). This would be semi okay with me as I managed without meds for 9 years when I was undiagnosed, BUT...

I'm SO BUSY!

It was helping my symptoms and

I'm going thousands of miles away from home, on my own, with no medication to help my POTS... that is bugging out my mind!!!!

back to the being stressed because of being busy... I try and plan things so that I can do busy enjoyable things and then crash out/rest the next couple of days. But then my bf keeps wanting/needing/asking me to do things. So for instance, Friday night was supposed to be a fun, non stressful night out with my good friend M. But now it's also a day out carpet shopping, with his Mum along too (an added stress because she'll give her opinion, which may clash with his and ours, which then means that she gets a bit knarked when he says his opinion is different, which means he then gets stressed with her and they snap at one another, which means I get stressed trying to keep everybody happy whilst also NOT being a doormat and just agreeing with someone else and ending up with a horrible, ugly carpet just to keep the peace and save myself from added tachycardia!!!
And then Saturday, which was supposed to be my day of rest/recovery and recumbency is now me driving us both to a family do. Which I now also have to find the time to buy a card for!!!
And Sunday, Sunday is no longer a day of rest in any way, Sunday I am starting a reflexology course so I will have to drive somewhere I've never been before, early in the morning, which stresses me out anyway, after ALL THAT OTHER STUFF- SHOPPING, PARTYING AND BF'S FAMILY OBLIGATIONS.

So instead of looking forward to a good fun night out, I am stressing about all the other things I have to do!!!

So I thought, this calls for some beta blocker. But BB wipe me out and I don't wanna be wiped out, so I cut a 50mg atenolol into 8ths with some scissors. It was difficult, and I cut my own finger pad, not once, but TWICE!!!!

Also, during the course of this past week, I have gotten into the habit of wasting my precious water by kicking it over in various patches on my carpet as I keep leaving the glass on the floor (where I usually am) and then when I actually get up to move somewhere, I forget it is there and inevitably my foot finds it and my cardigans, which are also on the floor because I'm too darned tired and stressed to waste energy hanging them up in the wardrobe, get a nice cold bath. So then I have to waste even more energy going to the bathroom for a refill of water from the tap!!

Next time I make plans, I am going to make them a week in advance, not 4. I thought I was being sensible and managing my spoons wisely choosing nights out with friends 4 and 5 weeks in advance, but no. That far in advance, other, less organised people tell me my time is to be filled with other things, courses spring out unexpectedly when I'm doing an innocent search (when it actually works) wondering if there might be any starting soon (bloody hell, it starts the same weekend I booked that night out!) and things like carpets end up having to be chosen, bought and fitted. In the meantime the plasterers plaster, the decorator paints, the fireplace fitters fit, the loft insulators insulate and my bf thinks I have it easy because I get away from it all during the week. Little does he know how much stress I am truly under trying to 'save spoons' for all these weekend events that are so tiring for a potsy, especially one who is on HALF HER MEDICATION AND SOON TO BE NONE!!!!

Okay, maybe I might benefit from another 8th of that beta blocker I cut up... all this adrenaline is not conducive to getting a good night's rest.

I feel better for getting that out! A good rant and rave is most therapeutic. Thank goodness at least one browser is letting me post to my blog.

Argh! So busy, but it's good...

2010-09-01T13:43:00.000-07:00

I haven't been able to post to this blog for weeks, due to strange things that are happening with my browser- when I've tried to connect to it with firefox, it just says at the bottom 'waiting for google analytics.com' and never does anything beyond that, the swirly thing just goes around and around! I've managed to post this using google chrome, but I have just discovered things are still not quite right as I wanted to edit this part to explain how I've posted this, and the only way I could get this to appear is by pressing 'refresh' and then very quickly pressing 'stop' before this box disappears, as it was only appearing for a split second when I refreshed and then turning into a white screen... bizarre! Also not sure if I can respond to comments so don't think I'm being ignorant or ignoring if you do post one and I don't respond! It's acting weird and I dunno why.

Anyways.

I have been SO busy and am going to be even busier still!!! So many social events coming up I am having palpitations and sleepless nights just from looking at my diary! It's all fun stuff and stuff I am excited about but also apprehensive due to the lack of energy and decreased stamina of having pots. It's like every Friday night for the whole of September apart from one is a night out, and that one that I'm not out I am on the Saturday. Next weekend I am out both Friday night and all day Saturday, thanks to my bfs friends both having their wedding the same darn weekend! I've been a little worried about that for months, because I have to drive on the Saturday after the night out for the Friday do... and I hate driving when tired and potsy, so it's been a background stress for months and now almost here... I will probably feel much better when it's over with, although I should also enjoy the event.

I am equal parts happy about all these fun things to do and also stressed, in an 'argh I hope it doesn't cause me a pots flare' way. But I don't want to live my life in fear always proverbially looking over my shoulder or guarding against having a flare. I do know I've got to pace myself and things and I do what I can to ensure that happens, e.g. leaving things earlier than others, scheduling in 'rest days' in the week, conserving my energy for the weekends as much as possible. What I don't want to do is turn things down because I'm afraid I can't do it... I have to try and if my body starts to give me signs I'm to slow down or even stop, then I will. I can always cancel something but right now, my philosophy is I am going to say YES to these events and go for it, not be half hearted and think 'uhhh I don't know if I should...' IF my body starts to tell me it's not up for it THEN I'll say no, but as long as I'm coping, even if it means being more tired in the week, then I'm bloody well going to have some fun!

So, if I don't blog for a while, it's because I am both resting and conserving my energy for all these fun events over this month... should be back in October with an update if not before.

As for the job/career dilemmas have finally decided- going to work part time in a nursery and the rest of the time doing my therapies. Just need to find that part time nursery job now...

Things with bf brilliant. He is fully supportive and loving with me despite my emotional and physical ups and downs (have had a few teary moments with him last month due to stress and uncertainty about what to do career wise- the stress aspect being the fear of how it will affect my health) and he has included me in all the decisions about how to decorate the new place, which should all be finished in time for my birthday, so I can't wait. It will look fantastic and we adore the place and the area. So all in all, life is looking very rosy and I am tired as usual BUT feeling happy and optimistic for the future.

New Beginnings

2010-08-26T08:11:00.000-07:00

Home alone (for a short while at least), rainy day outside, sitting in the lounge enjoying the soothing deep tick of the new mantle clock.

I have a new plan.

I’ve looked over the past few weeks at office/admin jobs (just to do it part time, 2 or 3 days a week) but can’t seem to find anything that really interests me. I’d rather do some work than no work at all, but fact is I do have a job. My holistic therapy. So my new plan is to expand the therapies I offer, to possibly work a couple of days in a holistic therapy clinic, to continue working from here, my parents’ house AND to add in working from my new place with my boyfriend. That way, I’d be getting double the income I get here, potentially even more if I get more exposure by working in the clinic, and eventually with adding in new therapies, an established clientele of returning customers.

My aim is to get enough custom to work full time at doing what I love.

I’m starting a reflexology course in a couple of weeks- only just booked on- but figured that’s a popular treatment and is something I’ve been interested in learning for a while. Bit of a shame I got distracted/confused and thought I wanted to work with children and spent 2 years doing that childcare qualification, but good things did come out of that- a good new friend in particular who I enjoy fun times with, and lots of fun/happy experiences on work placements, so even if I never use the qualification, I don’t regret doing it- it’s just a shame I won’t be qualified as a reflexologist until the summer next year… but at least I am going to get it done, instead of dithering around not knowing what to do! I have plenty enough money to live off of while I get myself set up, that’s not to say it’s not scary, because it’s like starting a new business all over again… but at least I have an income, albeit a small one, from the hypnotherapy I offer here from my parents’ house… so between that and savings, I should be able to afford the bills. Actually, it could turn out more lucrative than getting a part time job, because I’ll be covering more regions by working from my parents’ and from my place with my bf. So the two/three days I was looking at spending in an office environment could well be better spent either here; at my new place or at the therapy clinic, doing treatments. Then I can earn at least £30 an hour. I just need to ensure I get regular custom- which is where the reflexology will come in- and also thankfully I have done massage too, so I could use it, although I’d have to adapt the techniques somewhat to suit me with my health so I’m not tiring myself out doing too much physical stuff. I could also use my reiki and do treatments with that. The beauty of working from the clinic would be I wouldn’t need to advertise, so I’m really hoping they have a slot somewhere I could fit in… even if it’s only for one day.

It’s a new challenge… but I’d rather take on a challenge than be afraid to even try and thus never know if it could have worked out.

Today's Daily Motivator

2010-08-12T12:15:00.001-07:00

Greatness within you
There is greatness within you. Let that greatness shine.

You know for a fact that you are special. Use this day to bring that unique beauty and value to life.

Every situation is an opportunity to make a difference in your own special way. In every moment you can bring new richness to life.

No matter what your job or circumstances may be, there is always plenty of valuable work to be done. You can find great joy and fulfillment by doing what you can with what you have to make the world a better place.

Take a small step forward right now, and see how good it feels. Take another step, and another, and be delighted at how much you accomplish.

Feel the greatness that lives within you. Let that greatness freely flow into every part of your world.

-- Ralph Marston

Read more: http://greatday.com/index.html#ixzz0wQ97dAeb

POTS demons.

2010-07-18T13:50:00.001-07:00

It’s funny (not as in haha, how hilarious, but as in interesting) how even the smallest of disagreements has underlying demons lurking underneath- striking out, making us act in seemingly irrational ways.

During a phone conversation earlier, boyfriend told me he’d thrown away my bread that had been in the freezer. I “overreacted”- saying oh boooo, that bread is expensive, I wanted to take it out of the freezer on moving day and make sandwiches! Booo hoo hoooo!
He then “overreacted” back, getting very irate and saying a lot more words to get HIS point across than I used (I’m more succinct in the verbal word so it seems- not in the written). Words like how he is having to do this all alone and it’s very stressful and he didn’t want the bread there because he couldn’t be bothered with it (ouch- out claws another demon of mine) and that the bread was stressing him out and he’s doing this on his own because I can’t help etc etc ad nauseum.

I went all dizzy and weak (sometimes that happens when I’m tired/when something triggers off some unwanted emotion- it’s like my body just shuts down and goes ERROR:00513- CAN’T HANDLE- MUST SHUT DOWN and just let him go on and on saying ‘okay’ and ‘mmm hmmm’ in a little, weak voice. Strangely though, this is a better way of dealing with things (it doesn’t happen by choice, it just happens and I wish I could do it more often because it’s better than the alternative, which I am about to describe) than getting irate and ranting back. Because once he’d run out of steam, he wanted to smooth things over. I didn’t have any steam to get worked up or argue my point back, so what could have blown up into a really stupid disagreement (those demons like to pour kerosene on the fire of disagreements!) about something seemingly insignificant, didn’t.

Afterwards though, I was thinking about things, and my demons were still clawing at me. First, the demons of being hurt that boyfriend didn’t ASK me if I WANTED the bread but just CHUCKED IT OUT with BRUTAL DISREGARD for my FEELINGS (yes I’m using hyperbole here but there’s a grain of truth in this- why didn’t he just ask? Do my things mean so little? Why did he have such a vendetta against my bread that it had to be gone RIGHT NOW because it was so ‘stressing him out’? What about my sandwiches on moving day? My little imaginary picnic? No no no, what about ME? My feelings?) See what I mean about the demons?

Then there were the POTSdemons. (There are a great many of those- they are all the things that pretty much every human being feels to some degree that POTS likes to exacerbate- I.e. pour kerosene on!). I’d been ‘helping’ boyfriend by staying out of the way while he’s been packing. Just minding my own business, getting on with my own things, ‘leaving him to it’. I was doing this merrily and obliviously, thanking that I’d read ‘men are from mars…’ and other such books that tell us ladies that ‘men like to be in control’ and ‘don’t offer help unless they ask for it, or they’ll feel emasculated’ etc etc. I thought I was helping boyfriend feel awesomely masculine and like the solver of all packing related traumas and problems by not being there.

But when I recognised the demons under what he was saying on the phone, I realised he’s been seeing my ‘support’ as the total opposite- CRAPPYGIRLFRIENDNEGLECT,zomg!!!! So then my demons of horror, guilt and shame started throwing a party. For the biggest of the POTSdemons- a surprise to celebrate no longer being suppressed- a coming into consciousness party for- FEELING USELESSNESS.

Yes that’s right boys and girls, demons and fairies- thanks to POTS I feel USELESS! I can’t lift boxes. I can’t go up and downstairs many times fetching and carrying things. I had a bad, potsy week last week so didn’t have the energy to drive over and offer support in person. And because deep down I FELT USELESS anyway, I didn’t even think that I would be welcome ‘in person’. That, like boyfriend said ‘just having you sitting there as emotional support while I packed would be nice’ (oh guilt, do stop kicking my stomach!). When I envisaged such a thing momentarily weeks earlier, I could just see me as this awkward, ungainly, clumsy thing getting in the way, feeling useless and thus being even more clumsy than useful*, and boyfriend getting mad at me (sometimes I forget-okay, often I forget- that he’s not at all like my Dad) and me feeling even more useless and like a blob of humanoid jelly just bibbling around doing nothing useful but just being all blibby, bibbly and blobby.

*Here is a prime example of the uselessness demon clawing out- that there is an absolutely unintentional Freudian slip! I meant to type USUAL!!

I thought I was doing the much better thing keeping out of the way and making boyfriend feel like superman solving all the problems, doing all the leg-work, packing up all the boxes, standing back looking pleased and proud and telling everyone “I did this all by myself.” (Cue cheer and slaps on the back).

But no, it was more like “I’m doing this all alone, it’s stressful.”

So, I’ve obviously been completely delusional thanks to my POTSdemons and a simple little 2 minute diatribe about frozen bread getting chucked out without guilt or remorse led to the epiphany on my behalf that I FEEL USELESS and boyfriend feels ALONE AND STRESSED!

Oh no, oh woe, poor us!!!

So, cue overly long, rambly and emotional apologetic text, full of drama and angst, the demon underneath it all whimpering in the corner just crying out for forgiveness. (I’ve been sick today with stomach flu and hardly got sleep last night thanks to the pain- and I get overly emotional and dramatic when tired).

Boyfriend’s text back was ‘don’t worry, get well soon.’ (plus smile and kiss).

It makes it all quite comical, when you quash the demons and true love conquers all.

I do still feel useless though… I think that is one demon that I’ve got a lot of battling to do with… it’s a POTS thing fo’sure, it’s soooo hard to feel useful when half the time you can’t even get your own body to do simple things that you want it to do for yourself, let alone to ‘help’ anyone else. And then you feel like you’re blaming POTS for everything and people will think you’re this big, stupid, bimbling, wimpy hypochondriac lazy loser person who always says (insert appropriate whiney tone) “I can’t.” But that’s a whole other post/series of posts/lifetime of posts.

To some this would seem ludicrous...

2010-07-15T14:29:00.000-07:00

But I KNOW my potsy and spoony friends will 'get it'.

On Saturday (the day of the ball) I was having a pretty blah day. I woke up feeling really tired and 'out of it' and knew getting out of bed was going to be hard on my body. I was also pissed off because I'd been feeling really good for about a week, then woke up feeling like THAT the day of my 'big event of the year'! I took a shower (to get it out of the way because it tends to wipe me out even when I feel good), had lunch and went back to bed until it was time to get ready.

Then I had to drive to my bfs, and I was coming up the drive in my tight black dress, with my shiny just washed hair with added SHINE SERUM and my eye makeup done beautifully (I rarely bother with makeup so when I do, I make it really emphasise my eyes) and the very first thing my bf said to me was:

"You look tired."

and inside my reactions was WOOO HOOOOOOOOOOOOO! YIPPEEEEEEEEEEEEEEEEEEEEE!!! HALLELUJAH!!!!! Bells ringing, birdies tweeting, little men jumping in the air with fists of triumph YESSSSSSSS!!!

Because I thought to myself, FINALLY! Someone can SEE I am having a bad day! Someone can SEE THROUGH THE VENEER and recognise how I really feel!

I think what it was was my demeanour more than anything, because I was feeling weak and dizzy and was tottering in heels trying to carry a heavy bag, so I was moving really slowwwly and carefully, and my bf said I looked 'really wary' walking up the drive.

Still, it's only ever been my Mum and my friend M. who have ever recognised that I don't look so good (M recognised it when we went out at Christmas- she told me I looked really tired and she said- in her exuberant, foreign accented style- I never seen you look this way, so tired! Ahh, she was really worried and mother hen-ish that night lol). M also noticed I was looking better at the ball (despite it being a bad day, I'm still loads better than I was a few months ago) and she pointed out that my eyes didn't have the dark circles under them anymore.

My bf however likes to take the credit (jokingly) for many of my symptoms- my racing heart is because I'm excited to see him, my dizziness is because I'm positively swooning, and my rosy cheeks (that I now have since taking florinef and generally doing better) are because I'm GETTING SOME!

hehehe, he makes me laugh.

But only a potsy or spoony will really understand that feeling of elation I had when he told me I looked tired. It was better than if he'd told me I looked stunningly fabulous and made him want to ravish me.

"You look tired". Well I'd have never expected THOSE '3 little words' to be the words I was most excited to hear from him. ;)

:D Happy Things

2010-07-14T13:11:00.000-07:00

My bf's moving date has been brought forward one week! So, I'll be with him for the exciting day and the first weekend in the new place (that we chose together!). So so happy and excited. A week on Friday!!

I've told him I won't be able to help physically (he still overestimates what I am capable of and thought I'd be okay to carry boxes to the van, I did a little practice just holding a box and it sent my heart rate up so much that my legs and arms went weak, so I had to tell him it's too much for me. Stupid pots, because I was actually very strong before it, but I don't want to make myself ill on moving day and not enjoy our first weekend there!). He told me he's got the 'muscles' to help him (some friends he's roped in) and so long as I am there to share the special day it is okay.

So not sure exactly how I can help, maybe I will be able to make tea and provide snacks. It will probably still be tiring for me coz it's going to involve mostly standing as there'll be nothing to sit on! But I figure I'll be okay if I keep moving somehow, since I can walk for a few hours. I'll have to just pace about and make sure everything is running smoothly!

Another thing I am very happy about it I got back on the dance-floor! Here's a little anecdote- when I first heard about POTS online (a couple of people told me to look into it based on my symptoms) I thought I couldn't possibly have it because I didn't have any problems standing- and one of my favourite things has always been to 'dance the night away' on a dance floor and I never feel tired whilst doing so. However, what I hadn't realised was that my fatigue for the next couple of days wasn't normal. I thought everyone felt that way, and put it down to the exertion and the late night. I didn't realise it was because I was also potsy on top of that!

So, when I had this recent flare up it freaked me out because for the first time ever, I did feel tired and weak when dancing. So I am really, really ECSTATIC that I've been able to do that again and feel okay. Florinef is turning out to be a god-send because, although I still feel tired, I don't get the same degree of fatigue and am able to do much, much more before feeling weak.

Another great thing is my best friend from the walking group, M, who has been down in the dumps the past few months due to a bad ankle injury requiring a big surgery, was out with me in much better spirits and we danced together and had great fun. When her ankle couldn't take it anymore and I was getting tired too, we put our chairs on the dance floor (at the edge) and danced with our upper bodies. What I loved about that was having a friend with me crazy enough to do that. So many people take life too seriously and are worried about doing things that are "embarrassing". To us, it wasn't embarrassing at all but just great fun! We got some funny looks but that's all part of the fun of not taking yourself or life too seriously!

So yeah, both of us made a great comeback. :) This makes me happy, as I'd hardly seen her lately because she's been away a lot and times when I've made myself go out to walking group events, she hasn't, times when she has, I haven't- we've kept missing one another and I hadn't been well enough to drive and see her up until recently. So it was great to get back together Friday for the chinese and Saturday at the ball. :) She even said to me she had worried that maybe we weren't going to remain friends! I explained how it was only because of the pots that I hadn't been over to see her and not because I didn't want to. We'd stayed in touch via facebook and phone messages, I hadn't realised that she'd been worried about that. But now she knows and things are looking up, so we're probably going to be hanging out more often from now on. Yay! :)

So, the rest of the Summer is looking good!

:/

2010-07-13T13:30:00.000-07:00

I keep finding phone numbers and names of clients on random bits of paper or in the back pages of my diary, and I can't remember calling them.

This means that I either a) Forgot to call them (bad- losing customers due to brain fog is never good!) or b) I forgot that I have called them and have maybe even seen them, but can't remember (not as bad in that it means I didn't lose custom but bad because I usually see people 5 times, how can I forget seeing someone 5 times?!)

Dear oh dear, I am going to have to help myself out and make sure to be more ORGANISED because if I can't remember these things (and evidently I can't) I need to make sure I write them down in my diary and put CALL THIS PERSON and then TICK IT OFF when I've done it!!!

Brilliant Weekend

2010-07-11T15:01:00.000-07:00

Since Friday, actually. I picked my friend M. up from the local shopping mall and, as it was a nice day, rather than having lunch there, I brought her back here- stopping off first at a little, local garden to show her the baby swallows in their nest. :) We then chilled out in the garden, ate cookies, chatted and then had chinese for tea. It was a lovely afternoon. I drove her home and then spent a nice, quiet evening watching telly with my Mum as my Dad was out.

Saturday, for some reason I woke up feeling very drained and tired. I suppose driving to a mall and back and then through Sheffield and back is tiring for a potsy but I'd been doing SO well so I was really fed up about it. Well, more pissed off because I felt like Friday was a chilled, relaxed day and yet I still suffered potsyness after it- but I just rested all day- went back to bed after lunch and dozed- it was too hot to fall asleep, but I think taking it really easy helped, because I had a really good time at the ball.

I went to my bfs first and he made me laugh saying he could hardly look at me in my dress because he wanted to take it off and couldn't (as I'd got ready at home and arrived just in time to have a little chat before he dropped me off- he didn't go himself). He dropped me off and I then had great fun eating and dancing- I tried a little wine but found 1. I didn't really like it and 2. It was just giving me a headache so it wasn't even worth drinking it- I stuck with my water!

I had enough energy to dance to a number of songs, I felt much, much better than I have in a LONG time! :D Towards the end of the night, me and my best friend put our chairs on the dance-floor (she has an ankle injury and can't stand for long periods either) and did seated dancing- it was really fun because we still got to be part of all the fun, but without having to keep standing!

Today I had a nice lay in and then me and my bf picked what wardrobes we're having in the new place, had lunch, went a little walk and found our new local (I'm excited because it does discos on a Saturday night, so if I make some new local girly friends I can do more dancing- not every week by no means but every so often, it's great to have the option!) then came back to watch the golf on telly and after tea we picked what fire we're going to have in the new place. :) We're SOOOO excited, I can't wait!!!!

I'm shattered now and catching his cold, booo! But it was a brilliant weekend and I am SO pleased with how much better I feel now on florinef. Nothing is perfect and pots still affects me, but I have a lot more energy and "standing power" (i.e. I can stand for longer without feeling weak) so it allows me to do more things. Plus, getting up in the morning and not feeling terrible like I'd gotten used to feeling (and to say I just thought I "wasn't a morning person") is wonderful! I am really thrilled- all in all, things couldn't be better, but I do believe they are going to become better yet- when I get a job, move in with my bf, and make new local friends and have even more fun and enjoyment in my life! :)

I got a blog award!

2010-07-08T10:31:00.000-07:00

Another kind blogger who found my blog has passed on a blog award to me. In all the crazyness with worrying about my boyfriend and his Mum last week, and my 'career' this week, I'd forgotten to post about it!

I'll have to edit this later with further details as I'm waiting for a client who should be here any moment.

I applied for the job at university! :) I feel happy that I'm looking into other avenues whilst still planning on keeping up my hypnotherapy and adding to my repertoire of other holistic therapies. I feel like I have made the 'right' decision.

Applying for a job!!!!

2010-07-07T13:24:00.000-07:00

I found a job I liked the sound of, so I'm applying.

It's a little too late in the day for me to fill out my statement 'selling myself' to be picked for an interview, and I have a really busy day tomorrow, so hopefully I'll be clear enough in the head to do it Friday morning!

It's quite exciting!

The funny thing is, it's to be part of the careers service team at the university. That's funny because I have never really decided on a career for myself, never really known what to do... but it would be rather nice if I could help others make their minds up and save them the hassle and stress (that I've experienced first hand myself) of not knowing what to do with their lives!

I still want to be a holistic therapist and keep expanding the treatments I offer, so I'm going to do the herbalism course and probably a reflexology course next September (not this September as I miss three of the weekends due to a friends wedding and being in Peru, and it's very strict that you must attend all the days!) and then I can look into the health and therapy clinic near my new home with my bf, and maybe start building up a clientele there. That's depending on how working full time goes- if I enjoy that I might not want to work at the clinic! It's all a case of just embarking on a different path, and I don't know where it will take me... but I have to trust that it will all work out okay.

I do feel more positive lately. And I've now got the childcare qualification as backup if I do decide to go into that in the future. And the beauty of getting a 'different kind of job' than what I was considering by potentially getting into teaching is that it shouldn't be stressful/detrimental to my health- it should be the type of work I can leave at work- and thus I should be able to keep up my hypnotherapy practice in the evenings, from our new home.

I'd be happy so long as I got a job that was relatively interesting with nice people/the opportunity to forge new friendships and have a laugh at work! I miss the social aspect of working, I really enjoyed that when I worked in the nursery last Summer. So if I get nice work colleagues and a reasonably interesting job role, I'll be happy. Even though I love children, the more I consider my feelings and my needs, the more I believe that teaching wouldn't have made me happy after all. My instincts were probably right back in 2007 when I turned down my interview for a PGCE. If I miss children, I could do an evening with Brownies or Rainbows, apparently they are desperate for volunteers for that!

So, maybe now everything is coming together and I'm finally finding my way. :-)

Clearer Mind = Change of heart...

2010-07-06T11:59:00.000-07:00

Okay, so I said I wanted to apply for the graduate teacher program.

I emailed and asked for a form. Haven't had a reply.

My Mum is a teacher, one of her best friends who I have a lot of contact with is, my Dad is a teacher, one of my best friends is.

They are all nearly always very stressed and tired from the job.

I had big fears and doubts as to my ability to do it but I kept quashing them because I love children so much.

But you know what, I'm not really sure my heart is 100% in it. It would be if education hadn't changed so much, but these days (I know from my Mum) it's all about targets and statistics and staff getting bossed about to meet these targets/statistics so much that the enjoyment of actually being with the children is spoiled by the stress of the paperwork.

The level of fatigue I feel just doing my easy part time work from home is still very high. I don't want to do something that's going to make me more ill.

I think maybe I have to accept that I'm not cut out for it. I suffer with sore throats frequently so can't talk loud or raise my voice. I get overwhelmed/overstimulated easily so how I'd cope in a busy classroom environment with those two problems is beyond me, not to mention the fact that since I became ill, I don't want responsibility or stress...

I think if I tried to do teaching just because I love children and ignored all those other factors, I could be setting myself up to fail, setting myself up to be ill.

Also, I want to have a life outside of my job. I believe if I were to be a teacher, I'd come home exhausted, and the weekend walks would be gone.

Plus, I still get terribly brain foggy and that, above all the physical limitations, scares me silly because I could not be responsible for teaching children when a lot of the time I can't function for myself thanks to that.

So, I am coming to the conclusion that applying for the GTP is probably not for me.

There are other ways I can indulge in my love for helping children. I could do some voluntary work, such as be a helper at Rainbows or Brownies.

As for a job, well this is where I get stuck. I just don't know what to do. I'm THINKING that I'll get a simple admin job where I'd be sitting all day in an office. I'm almost loathe to say that because I could never see myself doing that, I wanted a job that would challenge and interest me BUT... my priorities are changing because of POTS and even though that does suck, I'm just thankful I have the option of working at all.

I figured if I had some kind of admin job, I could leave work at work and still have a life. Enjoy my weekends, go on holidays, not just be worn out all the time. I could also keep my finger in my holistic therapy pie. That's where my true passions lie. I love doing my hypnotherapy and would like to keep it up. When I move to the new area with my bf next year, it'll be an opportunity to get new clients and contacts. I might go to work in a clinic one day a week or something and see if I can build up a good reputation. I'd like to do the distance learning course in herbalism so I can also add that to it. There's so many courses in holistic therapy like naturopathy and chinese medicine that I'd be interested in taking to keep expanding my practice. I love the one-to-oneness of working in this way, helping people improve their lives. If I was a teacher, I wouldn't have the time or energy for it.

So, my new plan is to find a job somewhere, perhaps in a university or a hospital, doing admin or research or something (I'm vague because I've never had a job like this so don't really know what's out there or what it entails!) to get a regular decent wage coming in... and see if I can take one day per week off to work in a clinic doing my hypnotherapy/herbalism. And also do hypnotherapy from home too.

I think, even though I'd miss children, I'd be happier and HEALTHIER doing that. I've seen how terribly stressed and tired my Mum gets and she doesn't even have any health problems. I couldn't deal with it. It would make me ill. I don't think even my THROAT could take it. As soon as I'm a little run down from maybe one bad night, it hurts, gets dry and sore... I don't have a 'teachers voice' in me!

The strange thing is, since thinking this to myself, I feel... kind of peaceful. A little bit sad, but more at peace- it feels more right. I'm also scared because I don't know what kind of job I want or how to get it or if I can... but I'll just keep looking- I'm not wanting to start anything til after I've been to Peru ideally. Unless I saw something that sounded just right. I can just keep looking for ideas.

And, while I'm not doing anything these next few months, I can send off for the herbalism course and do that! It's exciting and interesting and who knows, I might be able to do some work as a herbalist at the end of it. There's a therapy clinic near my bfs (and what's also going to be my) new home. I'd just have to rent a room out. Maybe could just have one afternoon off work or something.

I just see possibilities in keeping that going. I enjoy helping people with therapy and I'm really good at it. I think I could end up crashing and burning as a teacher because it would be so demanding for me.

Maybe it's getting some of my health and energy back thanks to florinef that's helped me think more rationally and realise how precious that is and how I don't want to waste it doing something that I'm not really capable of. It's a hard thing to say to myself, to admit to myself, but I think it's healthy to recognise my limitations and not try to push the boundaries all the time just because I see my health as "holding me back". Maybe it isn't holding me back, but forcing me to look in a different direction, towards new possibilities I'd never have considered without it making me do so. And that doesn't mean those possibilities are worse, or lesser.

So, I reckon I'm going to send off for the herbalism course and get on with doing that, and in the meantime keep a lookout for some kind of job- I'm looking a lot on the local university pages as they have some that look as though they could be interesting. Fingers crossed I can find something I'll enjoy- it's a whole new world to me so I have no idea what to really look for or expect! I think with the teaching I was thinking 'better the devil you know' but the more I've thought about it, and listened to my fear not as though it's an enemy but this time maybe a sensible thing, I've come to the conclusion that it could indeed have been 'the devil' for me and just ruined any gains in my health that I've made these past few years since getting ill at uni. Which is not something I want to do to myself.

So, I'll continue to be a "holistic therapist" and keep adding to my repertoire. And I'll look for something else I can also do that's simple and pays for the bills. Then I can still have energy to enjoy fun times with friends and weekend walks with my boyfriend. Basically, have a nice, simple life that's as stress free and kind to my health as possible.

A week on florinef...

2010-07-05T13:24:00.000-07:00

My first week on florinef, I was exhausted and downhearted. I think everything was just getting to me, the fact my symptoms this year have been so much worse (despite having had POTS for the past 9 years, because it took me that long to find out what it was) was worrying me that I was going downhill, once you let fear in, you just start to suffer more, which is why I like Nikki's favourite quote "He who is afraid to suffer suffers already from his fear." I want to suffer as less as possible so I'm trying to just get on with life and not be afraid.

I don't think I am going downhill though, I just have different symptoms that are more noticeable. I had symptoms of fatigue for years, used to have nausea but thankfully that one went away, used to have severe pelvic pain, that one went away- so really it's just a change of symptoms, and if anything I'm much better than I was, the only thing is I am also much busier than I was, so perhaps that's why I am feeling as if I'm not improving, because I'm doing more and thus feeling tired a lot, but at least it's because I've been doing things and not like it was in the early days, tired just from getting out of bed!

One symptom I do HATE which I wish would go away though is my tremors. I get this weird feeling that's similar to the one you get when you need to stretch- that feeling of tension that's usually relieved by stretching so the stretch feels good- well I get that tension feeling but it's not relieved- it just kind of builds up in my chest into this feeling of 'too much energy, not enough air' in there- so I feel like I can't breathe enough oxygen. I guess it's the 'fight or flight' feeling, because it makes me feel like I need to move. I can't sit comfortably with it, it makes me want to keep moving to alleviate the feeling. I only ever get it when I'm still. A lot when trying to sleep (which disturbs me) and a lot when sitting. What's also horrible about it is if I try to just ignore it, my body gets these odd jerks/tremors. My leg will twitch/jump or my arms kind of go violently in and my shoulders shrug. I don't do this myself, it just happens to my body, and it's really annoying!

One of the downsides of florinef is I've noticed I am feeling this way more often. But I also noticed in little bits and bobs, my head is clearer and I'm not as tired/fuzzy, so I don't want to give up. Although these 'twitchy/wired up' feelings are actually my least favourite symptom, so if I can't find a way to soothe them and they continue to be this bad, I might have to see about a medication change. But I'm going to give it time and hope that maybe something else has caused the tremoryness to be worse, like the heat and a week of deprived sleep due to being too hot.

I am possibly going to have a very busy next week as well! I have the Summer Ball of the walking group this coming weekend, then next week my boyfriend is on about going to watch a practice golf championship in Scotland together, so that would be over 5 hours of travelling, staying in a B and B, walking around the golf course, watching the golf, another night at the B and B and 5+ hours home, I also made arrangements to see a friend (before I knew about this golf thing, otherwise I wouldn't have made those arrangements and would have just rested!) and, if possible, my bf might be moving house that Friday (a week on Friday) so I'd be helping with that. If he's NOT moving that Friday (it depends how fast solicitors can get the paperwork done) I am going to a POTS group meeting- yes, real life potsies meeting in my home city!

So that's a rather intimidatingly busy line up... hope I can gather the spoons for it!!! I am going on holiday soon after, so I know I can rest, rest, rest for two whole weeks, thankfully.

A very sweet thing

2010-06-28T10:33:00.000-07:00

Yesterday got off to a very stressful start, my bf and I were woken at 5.30am by banging on the door (that's enough to give anyone tachycardia, so my heart when I sat up while he went down to investigate was terribly speedy!) and it didn't get any better when the news was that his Mum had been taken into hospital.

We rushed up and went, she wasn't admitted so we ended up having a nice day, though strange, once we brought her home. It's still a worry as she's been poorly a while and isn't yet recovering at all. :/

My bf told me he was surprised I'd gone along too and not stayed in bed sleeping! He knows how I don't deal well with early starts but I was shocked he thought I wouldn't go. I told him he'd underestimated me vastly. He admitted that after 7 years of dating 'horrible women' who just used him, he couldn't get used to being with someone so different- that he knows I'm not like them, but his brain just can't seem to get used to it and he has to pinch himself to believe how lucky he is.

He later said something so lovely: he said "You've got a heart of gold, never mind a racing heart." :-) I felt so touched. He told me he'd waited all his life for a woman like me and thought it was never going to happen.

I just thought I'd share, since it's such a nice thing for a potsy girl to hear, lol. :-)

Blog mania!

2010-06-28T06:47:00.000-07:00

Okay, so I obviously blog when I am thinking things through... lol- it's my version of mulling it over, and I often choose to do it in this blog because my POTS condition affects a lot of the decisions I make and I know my fellow POTSy/chronically ill followers understand what that's like!

It's funny that Michele should have mentioned online courses in my post below because it just occurred to me that this would probably be the best way to go about it.

That way, I can TAKE AS LONG AS I WANT/NEED. I don't have to worry about travelling time/fatigue/expenses. (I don't travel well- so travelling to learn when also working is just about the worst for me!).

Also, it's NOT AS EXPENSIVE.

And I'd still get a qualification that would allow me to join some sort of 'body' for the ethical practice of herbalism.

For instance, doing the 5 year course would cost a scary few thousand pounds each YEAR.

I could buy the online course for half that price and that would be the whole course plus materials, everything! Then I could do it at my own pace with tutor support.

So, with this option now in mind, my plan is...

Apply for the graduate teacher program. I still want to work with children and can see myself enjoying this role.

Think more on this herbalism stuff, and if I do decide to go ahead, I can send off for an online course and progress at my own pace. That way, if at any time I'm 'under pressure' either in my role as a teacher or in my training, I can put the herbalism stuff to one side, to pick up later when I have the time/energy.

I've got to be practical as well as follow my dreams, and after all these years of not working, I do need a sustainable income doing SOMETHING and preferably something I enjoy- so for this reason, I am making the teaching course my priority, and the herbalism idea something I COULD do if the dream is still with me in the coming months. So I'm not jumping into any sudden decisions. There's a lot to consider, like- with the state of the economy as it is, I can't really justify forking out thousands of pounds for lengthy training when in the future, people might not be wanting to consult a herbalist! There's no guarantee of a good income, so I might never earn back the money spent, not to mention the time it takes and the ENERGY!

I want to live a happy, comfortable life enjoying what I do. I don't want to take on too much and be overworked for the next 5 years, so I've decided 99% against doing the original course I saw and am going to take my time and look into distance learning courses. But that said, the teaching course is the priority.

Another advantage I can see to this is I can either: wait until I've qualified as a teacher and got a feel for how much spare time/energy I have realistically before doing the course, OR I can start it as soon as I've applied for the GTP and be doing it in those 'empty months' January-September before I can actually start. Then, if I haven't completed it by then (not sure how long realistically it would take to do 9 modules) I could put it on a back burner if needs be whilst doing the teacher training.

After completion, I could then work as a herbalist on Saturday mornings in a clinic near our new home (these are just ideas) and build up a practice. Then if that works out good, could potentially move to working part time in teaching, and doing herbalism/holistic therapy the rest of the time (maybe 2 days per week).

If I didn't do it that way, I could always save the herbalism and the hypnosis (and any other holistic therapy qualifications I might acquire) for when I'm retired (I like to think of long term plans as well as short term goals and living for the moment). Basically, I just want to ensure I have options and don't get 'stuck in a rut' doing any one thing.

A sign...

2010-06-28T03:57:00.000-07:00

I got on the phone, made enquiries, and with my savings, I can afford the course itself. What I don't yet know is how much extra costs there will be, like books, travel expenses (unfortunately I can only do one year of it in Manchester- nearest me- the rest is in London so not sure what it will cost to keep travelling back and forth or to stay one night in a hotel each weekend I'm there).

Another important and scary thing I don't know is how much work I will have to put in in between weekends attending the course. If working full time, not sure how much energy and time I'm going to have for that... so yeah, it's scary.

But a big part of me still feels like I'd like to try! Even though another scary factor is at the end, I'm not even guaranteed to make any money at this! Though I do think I could.

There's so many offputting things about it, but maybe- just maybe- this time my dream could take me beyond that...

I asked for a 'sign' if this is the right path to take, and funnily enough when I just logged on, today's daily motivator said thus:

Another road
If something looks to be impossible, look at it in a different way. What you wish to do can be done, though perhaps not in the way you originally thought.

Just because one road is blocked, does not mean that the destination is unreachable. You can always find another road, or make your own.

An important part of any achievement is making it your own achievement. It is your very own dream, and you must find your own way there.

Whatever seems to be blocking you is merely guiding you to be more creative. Each challenge brings with it a new opportunity to add your own unique value to the effort.

Don't let your mind get so tightly wrapped around the problems of the moment that you fail to see the larger possibilities. Know that there's a way to move forward, and you'll find it.

Your imagination is what first connected you to your dream. Nourish that imagination and let it carry you all the way there.

-- Ralph Marston

Read more: http://greatday.com/index.html#ixzz0s90PRc90

I've not made up my mind, but I'm going to talk it through with my bf and my Grandma, and I am seriously considering it.

I have no idea though, if I do go ahead and apply, what job to do in the meantime. I think this AND teaching could well be too much, especially as I'd be training for a year in the teaching too so would have work to do for that. Maybe I'd be better off going back to the alternative option of working up to being a HLTA... but I don't know. There is a LOT to think about. I just hope I can make a decision I am happy with that carries me forwards!

It's never too late... right?

2010-06-28T02:53:00.000-07:00

All my life, I've been so 'out of it' health wise that I could never really make my mind up what I truly wanted to do. Everything I 'looked into' seemed too hard, to take too long, would be too 'scary'- too 'much' for me in my state of health.

I'm planning to apply to a teaching course that I'd start next year in September. I do love working with children and I'm sure I'd enjoy it, but I'm not sure if it would be my passion.

At the weekend, something happened that made me wonder if I might just be finding my passion. My boyfriends Mum was taken ill in hospital. She's okay, well she didn't have to be admitted anyway. But afterwards, he said something that's obviously got me thinking.

He was praising me on how I was able to help and deal with the situation, and how I had so much knowledge of medicines (and herbs) and I jokingly said "I should have been a herbalist." To which he replied "It's never too late" and went on to tell me I'd make a brilliant one.

Just thinking about actually being able to do that makes me feel excited. Makes me feel... fulfilled. Like I'd be making a difference, the kind of difference I want to make. Helping people- not just with prescribing herbs but in talking to them, listening to them, helping them holistically, making them feel valued.

Trouble is, it's not that easy. I'm 28 this year. I haven't had a 'real' job yet, ever. I need to earn money. I have limited energy. The course will cost money. It will take time (a long time if I do it part time!). I will need a job to pay for the course and my living expenses when I move in with my bf, but that means I can't do the course in 3 years, it will take FIVE. That's a long time. I'd be 33 before I could even start practising. What do I do in the meantime?? Do I apply for the teaching course? That in itself is going to be hard work. Will I be taking on too much and making my own health suffer?

Or another option is working up to a HLTA in a school like I considered before. That wouldn't have the stress of teaching at least, or the extra paperwork and hours, so might leave me more time and energy to put into the naturopathy training. But I'm not sure I'd have enough money to live on and pay for the training for 5 years!!

There's a lot I need to think about. And I've done this many times, thought of something, felt like it'd be a great thing to do, then looked deeper into it and come to the sad conclusion that it's "beyond me"

But if I keep doing that then it really WILL be beyond me; I don't want to look back in 10 years time and think, if only I'd tried when I was 27... now it really IS too late. In the same way now I'm thinking 'if only I'd realised this at 17... I'd have had more confidence to go for it, because I'd have time on my side'.

But 33 is hardly old! If I taught for 5 years and then changed careers and became a herbalist at 33, at least I'd be keeping life interesting. And then if it turned out I did find teaching really stressful, at least I'd know I'd got another option. And even if I spent the money becoming a herbalist and then didn't end up working as one because I might end up enjoying teaching, I could retire as a herbalist when teaching becomes 'too much' and even if I didn't do that, it may be worth it for the knowledge and the learning, even if I don't use it in a job-related role.

It all depends how much it costs, and whether I feel I'll be cut out for the amount of study involved (which, lets face it as we know with POTs is very daunting).

It might turn out I have to admit defeat and be 'sensible'. But I have an idea now and it's an idea that is making me feel there's something in life to be excited about again... so I'm not giving up on the idea just yet...

Reminder of the recent past...

2010-06-25T14:05:00.000-07:00

One of my best friends just uploaded some pictures of a night out we had last year, in November. It was an absolutely BRILLIANT night out. I got drunk and suffered muchly the next day (didn't know I had POTS so couldn't understand why I was still feeling 'drunk' and so dizzy all day the next day!) but the fun that was had was worth it, and I'm not usually one for getting drunk, even before knowing about POTS. I could always have a good time without it. Never needed it for confidence or anything- but this one particular night, I was just enjoying it and it made me very giggly and very happy- I feel like it made me more my natural self.

There's this one photo of me, her and my best male friend (well, after my boyfriend that is) and we all look SO happy (and healthy!). It's quite poignant because shortly after both my health and my female friends deteriorated- my POTS flared horribly and she had to have an operation on her ankle and has been out of work and depressed because of how it has incapacitated her (she cycles competitively and does rowing and all sorts of very sporty things, so to not be able to do that is awful for her).

I went on a night out in the same pub recently, a couple of weeks ago. She didn't go because she had a bad pain night. I forced myself to go and spent a lot of time sitting and staring into space. It made me so sad, remembering what fun we'd had the first time, and how different it was the second... when I was tired and doped up on hypertensive meds in an attempt to lower my heart-rate.

I am going somewhere with all this, not just rambling...

Seeing how bright and happy I look in this picture of the three of us made me determined, I am GOING to get back to that. Even if my POTS doesn't improve to the extent that I feel as healthy, I am GOING to have that bright, happy smile and FEEL that happy and carefree.

I was given a prescription for florinef today. When I read of the side effects and the effects of long term use I felt my heart sink and I felt very afraid to even start it! I don't want to depend on something that can give me GLAUCOMAS and osteoperosis!!!!

But then, after seeing that photo, it made me think. If it can give me back some better quality of life, it may very well be worth the risk- as they often have to report the very worst case scenarios in those leaflets on side effects because of this litigious society we live in. I've had 9 years of feeling fatigued and battling exhaustion- nights out like that were always few and far between- which I guess is why I was always SO happy when I went on one and felt good! If taking a pill could do something that gave me back more of that energy and sparkle that I've very much lost lately, then I'd take that over another 9 years of battling and feeling drained. Even though it scares me half to death to rely on something that could cause such awful effects in the long term.

That's what I'm telling myself anyway- because I'm hoping the fear is an overreaction. But I still feel uncomfortable about it.

But if I could feel as happy and well as I felt that night, and have a few years of that... well, it wouldn't be worth getting a glaucoma but I'm hopeful that the risk of that is minimal enough to make the positives outweigh the fear I feel.

Basically I guess what I am saying is, even though it scares me, even though I hate 'relying' on pharmaceuticals, IF they help me to feel good, so I can be bright and sparkly and happy again (not dulled and drained and wearing a painted on smile) then it's worth facing my fears.

If

2010-06-21T13:13:00.000-07:00

If I was given the choice-

Option A: you could have all your POTS symptoms go away, be as fit as ever, never feel tired again, never have tremors again, never lay awake at night with your heart racing again, and you could have a ticket to travel round the world and write a book that would be guaranteed to be a best seller, have your own holistic health healing clinic out in the country, basically have ALL your dreams come true, on only one condition- you had to do it without your boyfriend

OR

Option B: you could just carry on as you are, not knowing whether it will get better, worse or stay the same, not knowing if you'll ever get to travel the world, not knowing if you'll ever be able to concentrate long enough to write a book let alone whether it would be published, and probably never have a healing clinic because you don't have the time or energy to set one up, but you could keep your boyfriend for as long as he wants to stay with you (and you don't even have any guarantee how long that will be)

then I wouldn't even have to think about it, it would be option B every time.

There were some ups and downs in the beginning, and I was afraid he wouldn't want me when he found out I was genuinely ill and that it might never get better, and we might even snap at each other first thing in the morning after a terrible nights sleep because I had tremors all night and was too proud to admit what was going on and how awful I find it, but it's all worthwhile when he reaches out to squeeze my hand, looks into my eyes and sees beyond my illness, beyond my crabbiness and beyond my lack of self belief that I get at times and tells me that he isn't going to let me go because I am one in 6 billion.

To have him, to have that, I'd take the tremors every night of my life, to wake up next to him, crabby and exhausted and drag my potsy self out of bed before him to let him rest a little longer while I prepare us strawberries for breakfast, sitting and chopping while he showers, and have him teasing me for being a 'fidget' and keeping him awake- because he loves me anyway and having that makes having POTS, awful though it can be, just a tiny blip in a life worthwhile. Because I've been loved and I have loved. And that's all I ever wanted. An experience I hadn't ever had late into my years- to have someone choose to love me, flaws and all.

:'(

2010-06-17T13:30:00.000-07:00

This evening has just been rubbish. I became incredibly tired and almost fell asleep in the garden around 4pm, which would have been nice were it not for the stupid 'pots-jerks' I kept getting. WHO ELSE GETS THOSE??? They always happen when I am super-tired and trying to relax/sleep. My leg just kept leaping up off the ground and thumping the grass, and I also get them going up my torso and into my arms, so a leg with jump or hips will twitch, then an arm will fling up or out. It's SO annoying.

I was also in a 'mood' all day. I rang my bf last night for a chat as I thought that would be a nice thing to do, but he just went on and on about the state of the economy and how it's going to affect us all and it was all so negative. With my history of depression/anxiety AND POTS on top of that, I do everything I can to wrap myself in a protective bubble and not focus on 'bad stuff' so I got a bit arsey with him on the phone and told him I hadn't rung him up for a load of doom and gloom right before I went to bed so I could lay awake worrying all night.

He later admitted to me he's been feeling down. He'd seemed really happy at the weekend so I was really surprised. He's fed up with his financial situaiton/not having a job. He's trying to make this self employment thing he's doing work and it hasn't been working despite him trying for a year, but he won't quit because he keeps thinking he's just not learnt how to do it quite right and when he does, it will then work. I won't get into it but I wish he wasn't so focused on it because it involves studying the economy and that's putting him even more into this doom and gloom mentality that we're all in for trouble and strife.

So that phone call stayed with me because then I was worrying about all sorts. Like how money problems are a big reason for people splitting up, worrying we won't be able to travel together (which sounds like a really, I dunno, frivalous thing to worry about but it's been a lifelong dream of mine to go travelling with my partner and he'd like to see the world too, I don't want us to be held back by lack of money or my stupid POTS).

I was also down because I was really tired and potsy today, after such a great day yesterday. I know why- because I had to go into town twice yesterday due to forgetting (brain fog again) an essential item for proof of id that I needed. I felt so good yesterday I didn't think twice about 'pacing myself' and going there twice- and so now it's all hit me today. So that just compounded how glum I've been feeling- and exacerbated the worries- how will I cope with work? And if I can't work, and he's worried about money, well that will just be The End of us and our happy relationship because I'd just be a burden to him.

It's not like me to get this negative so I am hoping it's my hormones/time of month making everything seem worse. Even the sun hasn't boosted my mood today!

After I almost fell asleep in the garden, I was extra potsy when I got up, stubbed my little toe twice on a sharp stony corner so it ended up bleeding, then later on dropped a plug on the same toe, I feel fed up because my bf hasn't gotten in touch with me since this morning to say how he is or ask how I am, I feel tired out thanks to POTS and to top it all off, 2 further crappy things happened.

First one was an article in a free magazine that gets delivered. It was about a girl I went to school with. This girl hated me for some reason and actually, the feeling was mutual. She was a stuck up, arrogant, up herself snob. Well in this magazine it was all about these wonderful experiences she'd had travelling the world.

It just made me feel like someone might as well just tear my heart out right there. An 'arch rival' or whatever you want to do it, living the life of Riley while I am stuck here chugging my salted water and worrying I won't even get to work let alone the other side of the freakin' world.

Then, feeling very sorry for myself and sad I decided I'd do the one thing I knew would make me feel a little better: watch the baby birds in the nests that I've been watching on the Springwatch live webcams (it's a program over here that runs for 2 weeks only, every night). The cams were of flycatcher chicks, a blackbird chick, swallow chicks, avocet chicks, reed warbler chicks and kestrel chicks. They would pick 4 nests a day to show on a multiview screen, and you could enlarge any one of those if you wanted. I've been watching every day and night since I discovered the cams and have grown very fond of, and attached to, the little birds that are growing up in the nests.

Well. Just because it was the last televised show tonight, the cameras are now OFF!!! So, I can't even see my little birdies.

Okay so this entry is all pathetic 'oh woe is me' stuff and I am hardly EVER like this but when I do get like it, I do it in style so that's my post at how bloody crap I feel, let's just hope after a good night's sleep tomorrow feels better.

Brain Fog Disappointment post 2

2010-06-15T09:44:00.001-07:00

Well I've decided even if they say they aren't willing to send me a replacement, as the camera is working, I will say well in that case, I'd like to send it back to you and upgrade as I bought the wrong one by mistake. They shouldn't object to that if they think the camera is in good working order.

I'm just upset about how much the brain fog can affect me. I'm wanting to train to be a teacher yet I can't even get something like ordering my own camera right!

Still, not going to let it put me off trying. It just makes me afraid when I can't function mentally- it makes even simple things SO hard! :'(

Times like these I HATE brain fog.

2010-06-15T09:31:00.000-07:00

I've just realised... I've ordered the WRONG camera model!

I am SO frustrated and disappointed with myself!

The one I wanted is called Zs7 or Tz10. I remembered the '7' part and ended up ordering the Tz7 instead of the Tz10. I wanted the 10 specifically because it has more manual features so greater chance for creativity!!! I don't know if they will let me send it back to upgrade because I sent an email complaining that the camera was thrown over my 6ft 6 high gate requesting a replacement as it could have been damaged!! So now they might think I'm only doing that because it could have been damaged.

UGH!

I felt my heart sink when I realised the manual features I'd been so eagerly expecting weren't there. It's such a simple and easy mistake, anyone could make it, but it is still SO frustrating.

I suppose I'll just have to wait and see what Pixmania say about how it was delivered and if they're willing to send me a replacement I will ask then if I can send it back and upgrade. If not, then I'll probably just have to suck it up.

It takes AMAZING quality pictures though on auto mode. But I still wish for the extra features that I thought I was buying, and the next camera up would have those AND this awesome picture quality. I can't believe I've been so dumb. :(

10 Random Facts

2010-06-14T02:11:00.000-07:00

Finally I've remembered and found the spoons to do this fun thing that was passed on to me from Michele, who writes one of my favourite blogs on dysautonomia- Dysautonomia Normal

I hope I can think of 10 facts that will be funny/interesting/entertaining...

1. I'm a hypnotherapist. Many people find that interesting and/or freaky, but it's really not freaky at all. It's quite simple and anyone could learn it (though not anyone could necessarily be good at it). I don't take control of anyone's mind. I just help them to use it in a way that brings them good feelings and solutions to problems. I've worked with people with depression, anxiety, weight problems, flying phobias, smokers who want to stop, people with lack of confidence, people with stress- and had mostly successes. It's been rewarding and interesting and although didn't earn me enough money to move into my own place, it's at least given me a way I can earn some spending money whilst I was trying to figure out what the heck was wrong with me and where all my energy went when I used to have it in what felt like unlimited supply!

2. I also do something called reiki. It was something I did for myself (so I could help myself feel better) but I have also used it on a few customers, though not anymore because a) you have to stand up for an hour and b)it hurts my wrists to hold them out over people's chakras. I can vouch for it being very real and vert wonderful though- I've received treatments from others (which is what made me want to do it) and I give myself treatments too- NOTHING is better than when you get an awful period pain cramp than just holding your own hands over it and feeling really warm energy flowing in and soothing that pain. It's just like having your own portable hot water bottles!

3. I love bees. When a bee buzzes near me in the garden I get this feeling (vibe) that the bee is a happy creature, I know this sounds weird but I do pick up 'feelings' from things sometimes and the feeling I always get from bees is that they are happy creatures that enjoy being busy and having a very concrete purpose. I also get a very giggly, happy feeling but that could be just because I think they are such lovely creatures- I'm talking mainly about our bumble bees, black and white stripey with fat, fuzzy bums. hehehe.

4. I can identify the bird songs of pretty much every British bird, so when I go for a walk in the countryside, I don't just hear 'birds singing' I will be able to hear a chaffinch over there, a blackbird there, a Song thrush there, a robin there... you get the idea. I can't even imagine what it's like to just hear song and not know what it is that is singing because it's such a natural part of my life and has been since I was growing up as a child who loved birdwatching. If ever I hear a birdsong I don't recognise (or have forgotten- my memory isn't as sharp as when I was a child and there are some I will sometimes hear that I think- darn it, I USED to know what that was but can't remember!!) I will get very keen on trying to find the bird making the sound so I can identify it by sight (I know most without looking in a bird book too). I certainly CANNOT imagine people seeing 'a bird' and not knowing what species it is!

5. I'd like to write a book one day. In fact no, I HAVE written a book, I'd like to get one published. Whether I actually will or not though, I don't know. My levels of fatigue and brain fog have sadly exhausted my writing talent (I feel) and I can't even think of what sort of book I'd write now.

6. I'm running out of 'interesting' facts now... must wrack brains!

Oh. This one is interesting, although I remember a bad experience at school when we were doing the topic "All about me" and I stood up and told this story to the whole class and they laughed at me and didn't believe it.

Remember when the space shuttle (I think it was Discovery?) blew up on take off, in 1986? I was only 4 then and I foresaw it happening. I used to watch Button Moon as a child and I must have had a dream about the explosion, and then that next day (the day the shuttle really exploded) I was at my Grandma's house and asked her to play the episode of Button Moon where the rocket explodes. She said she didn't think there was such an episode and I was very adamant that there MUST be because I had SEEN it! She told my Mum about it when my Mum came to pick me up and they both kept telling me the episode did not exist but I was so certain I'd seen it. Well, on the news later that night when it showed the shuttle blowing up, apparently I said to my Mum "There, I TOLD you I'd seen it and you wouldn't believe me, I KNEW I was right!"

How weird is that?! My Grandma then ended up ringing my Mum.
I only have a very vague memory of this now, but I remember seeing the explosion and not being surprised or shocked because I HAD seen it happen already, but I doubt I knew what was really going on. In my little child's mind the TV was just entertainment. It wasn't the last time I had pre-cognitive dreams though, but it was the first time it was over something as public and memorable as that event.

7. I used to have horrible nightmares about the end of the world, a big meteor hitting earth and me getting burried alive and telling myself (whilst burried) it'll be okay, someone will dig me out- then having this awful thought that NO ONE is going to come and dig me out because EVERYONE will be burried or dead! It was a hideous dream!

8. Oh, I'm on a role now about freaky dreams and things! lol. When I was little I used to have a dream about a severed hairy hand that would come and pat me on the back- it sounds funny but it was REALLY scary. Well one night when I was 17 it was really strange because I had that dream again- I dreamt "Handpatter" (as I called him) came to my window and tried to get into my room. What was freaky about me dreaming about it again after all those years was that my Mum asked me what I was doing at 4am banging my window shut? My window hadn't been open- so I must have been 'acting out' my dream somehow and trying to 'shoo away' handpatter and then shutting the window hard!! Weird!

9. I've had general anaesthetic twice and I always go really loopy from the morphine- I suppose everyone does- it makes me happy happy! lol. I remember awakening from my laparascopic surgery and thanking everyone for being so good to me, shaking their hands and thinking that I was fine and asking was it really necessary to keep wearing the oxygen mask? (I was told yes). The first time I'd had anasethesia was when I had my tonsils removed at 15, the second time I was reminded of how morphine weirdly makes your nose really itchy! It's such a bizarre (but not unpleasant) feeling.

10. I seem to suffer terribly from sunlight deprivation. If the weather is cloudy for a prolonged period I get really down in the dumps and even more tired. I remember one day in the Winter last year, when I was suffering a POTS crash and had been feeling like I was well into my 'energy overdraught' and then one day, it had snowed and the sky was bright and blue, and with the bright sunlight plus the bright white snow reflecting the sunlight, the luminosity (amount of light perceived by the eye) must have been soooo high, and I suddenly felt as if I had lots of energy that day and felt great! It makes me very sad that it's not sunny often in this country anymore- we seem to now get a lot of dull, overcast weather in the summer too, and a lot of foggy, dreary weather in the winter. I think its the effect of global warming changing the climate :( I wouldn't like to move away from England because I wouldn't want to move away from my family, friends and culture, but I often wish I'd been born somewhere that gets more sun as I'd probably FEEL a lot better.

So, that's my facts for the sugar doll award- and now I am to pass it on. So, I'd like to pass it on to Candice who writes Infectiously Optimistic: a wonderful blog about living with Late Stage Lyme disease (and dysautonomia as a result of that!) and to Ash, another fellow POTSy blogger! Ash's POTS Blog

Change of mind...

2010-06-10T13:16:00.000-07:00

I decided to try my medication as prescribed by the doctor. I had a good couple of weeks (great in fact, my resting tachycardia was GONE!) but all symptoms came back. It felt horrible to feel my heart pounding away again and I thought to myself, that poor muscle needs a BREAK! So, although admittedly taking medications scares me... I'm looking at taking them as a temporary measure to give my heart a break whilst I try and get stronger and better in the meantime. If it turns out I have to keep taking them, then I will so long as they IMPROVE my quality of life.

I changed my mind when my college tutor pointed out to me (because we can have honest and frank discussions about how I am feeling- she's had health problems so she understands and really listens) that having my heart overworking all the time can't be good for me, and even though Drs all say that there's no evidence of that shortening your life, when have I ever believed doctors and why take the risk?

It's hard though because part of me does feel like I am taking poison. But perhaps that's just as I've got myself into a negative mind set about pills. I wouldn't be without my overactive bladder medication for the quality of life it's given back to me compared to how my bladder was before it. I think I just worry more about taking medications for the HEART because it's like the most vital organ that we have! But then, equally I could see these medicines not as poison but as things that are aiming at the least (and hopefully one will succeed!) in PROTECTING that organ and helping it out with all this hard work its having to do due to the autonomic imbalance!

If the medicine doesn't help or improve my quality of life then I won't take it, it's that simple. But I'm going to at least give it a TRY.

So, medication number 2- diltiazem calcium channel blocker- let the trial commence.

Brain Fog Escapades.

2010-06-01T08:49:00.001-07:00

(Wow, I remembered to do this! Often my brain fog is such that I would say I'm going to do a post next and then forget to).

Ever since I did "The Workout" (250 steps, running on the spot, crunches, dancing and tidying) I have been in a very foggy mental zone. I haven't told my boyfriend the words 'brain fog' but I have made him aware of it by referring to my 'short term memory' not being good (wheras his is), and we've gotten into joking about it- because my long term memory is great (whereas his, not so)! So I remind him of things like conversations we had when we first met and we have fun reminiscing, he reminds me to remember the things that I need to take home, or reminds me that my trainers are in HIS car when I'm going crackers checking my car, his hallway and his cupboards wondering how they can have 'vanished' LOL.

So, this past week I had a couple of particularly 'bad' escapades.

1. On the day out with my Mum, when I'd had to leave the house before 10am and was feeling very loopy, she asked me to go and buy the ticket for our parking. I went over to the nearest one, stood reading it and it might as well have been written in Swahili for all the sense I could make of it thanks to BF. It said 'blue badge holders pay here' and there was even a big labelled part saying 'blue badge holders only' that I somehow didn't see or register. So in my state of not knowing what to do and not knowing why I couldn't pay unless I had a blue badge, I reasoned (BF reasoning never tends to work out well) that if I payed the money and it still gave me a ticket, then it would be okay- because I don't have a blue badge so if it accepts my money when I don't have the badge, it must mean I can pay too!!

(I HATE how BF causes you to become like the dumbest person ever!!!)

So I got my ticket and then when I read THAT realised it had given me a ticket for blue badge permit holders ONLY (well DUH!) and that I'd have to get ANOTHER ticket. Then I saw that there were booths all over, for different parking permits- blue badge, short stay and long stay. Oh man! Luckily I'd gone right back to the car to tell my Mum and she sorted it out (after storming about and yelling at me) because I'd have probably gone and bought a short stay ticket after that, I was so befuddled.

2. On Friday night, the toilets in the 2 bars we went to were both upstairs. UGH hate that about bloody bars where I go!! I'd use the disabled toilet except you need a special key of some kind and I don't know how you get one, and I'd feel bad if anyone questioned me because I can dance all night but walking upstairs sends me into a loopy-meltdown!
So anyways, walked upstairs, saw the signs on the toilets for male and female, made a split second decision as to which one was the ladies and waltzed in to a man peeing in a urinal. Had a moments hesitation of confusion thinking that the MAN had gone wrong and was using the wrong loo til I realised LADIES DON'T HAVE URINALS whereupon I spun on my heels and practically ran out.

Perhaps I've had POTS for longer than 2001 though, as I've always had a tendancy to do dozy 'forgetful' things- such as the time when I was at the local cricket pavillion with my younger cousin- who always used to use the 'players and officials only' entrance as a short cut. So I had gotten into the habit of using that way and walked in to phone my friend. Was very confused as the 'corridor' was very steamy and there was the sound of fast running water, a lot of heat and soap suds running out from closed curtains... I realised then why the entrance was for players and officials only- there were SHOWERS all along that corridor! So I ran through to the other end as I was about halfway by then anyway, then rang my friend to ask her if she could come over and meet me there.
Now, you'd think that I'd REMEMBER WHAT HAD JUST HAPPENED wouldn't you, given that it was so out of the ordinary? But no, after having been distracted by the phone conversation I'd COMPLETELY FORGOTTEN and so I walked back to the players and officials only exit, opened the door- and saw A NAKED MAN SOAPING HIS BUM!!! AAARGHHH! I turned and ran away. When I got outside, my Mum asked me if I was okay as I 'looked a bit red'.

So, beware of the BF ladies and gents alike, you just don't know what kind of escapades you could get yourself into! So far I'm a pseudo disabled pervert with penis envy who leaves her bikini in the spin dryer at the gym.

At least I will be well practiced by the time I'm an OAP. By then, I'll probably be sneaking into shower rooms on purpose and blaming my 'dementia' for the delight of seeing a man soaping up his backside. Yes, I intend to use the "BF" fully to my advantage in the future, and I suggest you do too. Just think of the possibilities! :)

What a great weekend!

2010-06-01T08:00:00.000-07:00

I've made amazing improvements this weekend. I am putting it down to taking LIQUORICE ROOT. I read on the DINET site of a few people who'd found it helped them- it works similarly to florinef without the side effects. The important thing for potsies is to take the type that has the glycyrrhiza stuff in it, NOT the de-glycirrized type. (They sell DGL liquorice root for people who might end up with high blood pressure as it's the ingredient that can raise bp- now for some with POTS this is a GOOD THING!).

I still get the fatigue but since taking it I don't get the WEAKNESS. I started with that symptom only recently- around November last year, and crashed horribly from it. It was only then that I realised I even had tachycardia (because it got worse) and thus chased up my diagnosis of POTS by getting myself referred to a specialist. So, I don't know exactly how long I've had it, but judging by what happened to me at universiry, my guess is since then (9 years). Back then, when it first started, I had the weakness, nausea and panic attacks. It took me years to improve but I got stronger gradually year by year. Then in 2008 I got a mono-type infection in the Summer, followed up by flu and bronchitis over Christmas/January. Strangely enough, I joined a rambling group in March 09 to get my fitness levels back up after the mono-thing, as it did really weaken me, but it wasn't until November the following year that I had the weakness and the noticeable tachycardia. But, I've had POTS symptoms all along since at least 2001 and have probably had tachycardia all along, I just never realised.

Having 'survived' this long unmedicated, I recently decided I would only take pharmaceuticals for the POTS itself if I NEED to. I take them for one of the conditions I have thanks to POTS, overactive bladder, and couldn't do without those meds, so I'm not against meds but only if they are NECESSARY. As I am doing pretty well without them, I don't want to take them, for fear of what would happen if I got worse and was already medicated. So I am leaving those for a last resort!

So, for that reason I decided to try liquorice first as I was having issues with low blood pressure, and always felt worst when it was this way. Within two days of taking it, I was getting numbers in the low 100s over 70s, and my inappropriate sinus tachycardia is MUCH less significant- which in itself has helped immensly. (No more heart rate climbing to 120 just reaching for a glass of water!).

I had one day where I even had a normal standing heart rate (80s!). I got overexcited and did a load of working out. Too much, really- but it was worth it as I enjoyed it so much! I felt terrible the next couple of days though, extremely fatigued and brain foggy* BUT my bp was still good and stable. If it wasn't for the fact that my vital signs were good, I would not have gone out Friday night as I felt really bad... but I figured it was fatigue from over-exerting myself with the work-out on Tuesday, and that since my vitals were okay, getting out and seeing my friends would do me good because I knew if I stayed in just because I felt tired, I'd feel miserable and defeated, which for me felt like the worst of the evils.

I'm still learning how far I can push myself and when not to push so I figured I'd go out and come home early if necessary. The funny thing was though, going out perked me up! My two closest male friends were very considerate in that, as I couldn't stand up chatting with the rest of the group, they'd sit with me and keep me company so I was never left 'alone' or left out. I stood for a brief period socialising until I started feeling hot and sick. We were going on to a 90s bar/disco after that and I wasn't sure how I'd feel but was optimistic I'd be okay. I've always loved dancing and have always found my body to be amazing in its ability to allow me to do that- I even danced at my cousins wedding when I had the mono! (At the time I thought I had a 'virus' as I have been prone to getting random viral things ever since the original one in 01 that I believe gave me POTS!). I remember thinking at the time 'wow I can tell I have a virus, I'm running out of steam already!' but I still managed to dance long and hard. That's why it was awful when I had the pots crash November because I could only dance for a few minutes before I got breathless, tachy and weak; nothing had ever made me feel that way before!

So, Friday night I was hoping that wouldn't happen and thankfully it didn't. So I'm wondering if the weak feeling is the sign of my bp being low. I also got the weak feeling a lot when my hormones were unbalanced due to changing contraception methods- had a rough few months with that til they settled.

Thanks to feeling stronger, I managed to dance for a couple of hours and didn't get home to bed til 3am. Then I went to stay with my boyfriend and I slept barely a wink. I can't imagine why as I was exhausted after my exertions; his curtains don't keep enough light out for me but even despite that I thought I'd sleep, but didn't! So, on Saturday I really cannot believe how far I walked as I felt so beyond tired. But the strange thing is, I do feel better when on the move. So, we did a lovely walk (the new area we are exploring is mostly flat which is fine for me- I think my body is used to having a heart rate of 130-140 when walking around, it's when I climb hills it gets difficult) and it turned out it was around 9 miles! My bf wanetd to do another walk the next day and I, non-commital as I always am (there's no predicting how you feel one day to the next), I said I would see how I felt.

Next day, felt tired, legs felt a bit achy but stronger. No weakness. So we walked for 4 miles, had a rest, then walked all the way back. Another 8 miles clocked up!! That after a night of dancing, a sleepless night, and a 9 mile walk! The second walk even involved a few more hills!

Now that I have stopped, I do feel incredibly tired today. Like 'not with it' type of fatigue. Like as long as I don't have to do anything mentally taxing like buy a parking ticket** or go to a public toilet in an upstairs bar***, I'll be okay. Just sitting, typing, browsing the net, doing what I can to keep occupied and stay awake.

But the fact I managed to be so active, at a time when I wasn't sure I should be doing *anything* has really given me hope and a positive feeling. I still have to 'pace myself' and turn down activities and make sure to schedule in times when I can 'recover' or 'prepare for' things, but I am counting myself very lucky that despite POTS, I'm still standing, yeah yeah yeah! ;-)

*see my following post 'brain fog escapades'.
** you shall see...
*** keeping you in suspense, but all will be revealed...

Decided.

2010-05-28T03:31:00.000-07:00

I've been 'too chicken' to do this for years (well, actually it's because my local hospital is horrible and I've had one too many bad experiences there, first hand as well as when my Grandad was there dying and how awfully he was treated). But now patients are allowed to CHOOSE their own hospital, I am going to do it if I have do.

Do what?

Go back to see a urologist.

You see, they wanted to do urodynamics tests on me and my cystoscopy was so awful (done by an intern, and not very well I might add!) that it put me off having any further investigations at that hospital and I discharged myself.

But now what I figure is this- if I can't take desmopressin OR if it doesn't help, I need to try and find something that does/will. I heard a while back about interstim therapy, a sacral nerve stimulator that can help bladder conditions, but I thought you had to have interstitial cystitis to have one. You don't.

Now that I am diagnosed with a neurological condition, I feel I'd be more able to push to have one if other therapies don't work. The oral medication I am on now DOES make a difference, but it's not enough. If I leave the house, I still get ultra potsy because I can't keep my fluids up as much as I would were I near a bathroom- because my bladder capacity is so reduced due to my nerves not working right. If this sacral nerve stimulator could help to increase my bladder capacity, then I'd be able to drink more and would thus be less potsy. That way, I might actually be able to live a more 'normal' life.

So, depending on the outcome with desmopressin, I'm going to see a urologist AT A DIFFERENT HOSPITAL about it. At this point, ANYTHING that could help me with my bladder symptoms I would be willing to try, because they make dealing with pots so impossible, plus as much as I do drink I think I pee it right back out anyway!!

So, just waiting to see what my specialist says about desmopressin... if I can try it and it works, great. If not, urology here I come...

Woke up all assertive.

2010-05-28T01:00:00.000-07:00

So, yesterday, my ultra potsy day.

I think that the problem was hydration. When I got home from the trip out with my Mum, I felt EXACTLY as I do when I've been travelling by aeroplane. The only reason I can think for feeling that way is dehydration.

Because I have an 'overactive bladder', when I go out anywhere I am reluctant to drink very much water, which as we potsies know, is not good for pots!!

The way I have managed this is by going places in the afternoon and drinking around 3 litres before leaving the house. Then slowing down my intake about an hour or so before leaving the house, so I can be sure that my bladder is empty when I leave and thus won't be pestering me to go to the toilet too soon.

However, life can't always begin in the afternoon! There are things I want to be able to do that will involve leaving the house in the morning and even things that would involve being out all day. Things that right now I feel I couldn't do whilst keeping up my fluids because I'd need the toilet and not be able to go. :/

If there is any chance or any way something can help with my symptoms of peeing out every 250-300ml then I want to take that chance. I have read about some potsies taking desmopressin to help them retain fluids and I had asked about it at my diagnosis appointment and been told it was a possibility. Now, I don't know whether something has been lost in the communication between my Drs and my specialist but so far nothing has happened about that beyond me getting some tests for diabetes insipidus. But I know of people taking it IN THE UK who don't have that so I know it CAN be done. So, I have once again taken matters into my own hands and emailed my specialist asking if there's any chance I could at least try it, in case it does help me retain fluid.

All she can do is say no, but if I don't ask then I won't know!

The email

2010-05-27T13:00:00.001-07:00

The one I mentioned in my previous post had this to say:

Q: I get so tired at times of the uncertainty of life, the unlimited aspects of life that are revealed in a moment, and then as soon as we think we know what it is, it becomes something else to navigate. How does one ever come to terms with this?

A: Our experience of life is determined entirely by our point of view. Life is simply an endless flow that we see through the glass of our sense of self. The color of the flow is the color of our glass. What is that flow? Never-ending movement. Is it uncertain, or is it simply a flow, like water running down the side of a mountain, or the sea endlessly kissing the shore?

"Uncertainty" is an interpretation of the flow of life, isn't it? A story.

This raises a question: Are we navigating a sea of uncertainty, a sea of opportunity, or a sea of ecstatic bliss? It all depends on our point of view, and that depends on our relationship in stillness with the flow of life. Uncertainty is actually quite certain, isn't it? Why should we argue with it? Arguing with it, expecting it to stay put according to our expectations, can be very tiring. Much easier to go with it, rooted in stillness rather than the constant change. An interesting thing happens when we let go of expectations in stillness. We find we have many more choices as we move through – unlimited possibilities for uplifting the flow of life. And there is joy in this.

The question of uncertainty gradually becomes a non-question as we engage in spiritual practices. The question melts into what is, as we become that which we were questioning. We find we are not required to take sides (no sides to be taken), or have a fixed point of view, and that doing so only harms us and others. This awareness becomes acute, and we learn from our own experience.

As we cultivate abiding inner silence, and see it (our silent Self) moving increasingly in resonance with the flow of life, then life is seen through a clear glass. It is seen as an endless flow of radiant divine love, beautifully adorned with all of its warts and blemishes, permeated with pure bliss consciousness all the while. We are That, and we find ourselves acting accordingly in the world.

We come to terms with the flow of life by awakening in the realization that we are life itself.

The guru is in you.

sigh

2010-05-27T12:38:00.000-07:00

Feeling a little glum lately, ironic that had to happen after I said I wanted to write more about the positive. So I figured what I'd do, so as not to deny my negative emotions, is get them out first and THEN put in my 'despite dysautonomia' things at the end, to end on a positive note, to show others and remind myself that even though it can be hard to live with, life can be lived in happy ways despite dysautonomia!

So, feeling glum. Well, I guess it's mostly because I feel FRUSTRATED. I feel like my life is on hold. Because of pots I haven't truly worked (I don't consider my own business with very part time hours really working) and now I've made my mind up what I'd like to do, it's too late to apply for this year, so I have to wait until NEXT year. Next AUTUMN! And to top that off, it's not even guaranteed I'd get a place, so if I don't, I'd have to apply again in 12 to start in 13, or apply to do a different route into teaching, but again it would be starting in 2013! Because by the time the application process is over, I'll have missed the deadline for anything starting in 2012. So I basically get one chance only, if I don't accepted this year for NEXT, I'm waiting until 20-freakin-13!!!!

It makes me feel afraid and I don't like to feel afraid. It's daunting enough having pots in your life without other things having to be so hard on top of that!

I am trying to be optimistic though and tell myself I'll find a way to work with kids no matter what. If I don't get accepted for the Graduate Teacher Program, I'll find out by next Summer. So then I could get a job either as a teaching assistant or even a job in a pre-school or nursery. Although as I would prefer to be a teacher, I'd probably be best getting a TA job and working up to HLTA (top level) and then if I chose to reapply for GTP I'd have more experience.

I suppose I am feeling bad though because I'm assuming I won't get in- because I am thinking about this on a very bad potsy day and that always makes me afraid and think the worst.

So, what I will have to do is just do everything in my power to make sure I get accepted, so I can begin training in September 2011! And IF I don't, instead of feeling glum and panicky about it now, I will cross that bridge when I come to it! I am after all a big believer in the universe supporting and guiding me...

oh. my. god!

I can't believe how IRONIC this is what just happened!

As I was writing that sentence, an email popped up- just for long enough for me to see the title: THE UNCERTAINTY OF LIFE.

I believe in signs like that. So I will read it when I finish this blog, and I'm sure it will probably be telling me to embrace the uncertainty and not to worry because no one can know what their future holds so there's no point worrying about it!

So, I will just apply for the GTP with the best glowing references and glowing self report I can muster, and then pray and hope and ask my angels to pull out all the stops (I believe in angels and regularly ask them for help and they always do help- my driving test story is a class example of that!).

Then IF I don't get a place, well I will accept that 'it wasn't meant to be' and accept that the universe is steering me in a different direction, and that even though it wasn't in my plan to go that way, everything will turn out all right if I just have faith and trust!

Wow, I feel much, MUCH better now! hehe. Blogging is always so cathartic for me!

So, despite dysautonomia, I went out walking at the weekend in very hot weather and enjoyed most of it! Didn't walk as far due to the heat, but saw some very pretty countryside and took pretty pictures. Passed a trout fishery where they sell fresh trout, which we are going to buy one day for our tea! Yum yum!
Also, last week I went out with friends to a restaurant and had a lovely time chatting and catching up, and tomorrow I am going out for a friends birthday- and will no doubt end up dancing. Even though I have felt uber crappy today, I am determined to go as I've been looking forward to this night for months!
Oh, and today me and my Mum found a gorgeous lounge bar/restaurant where I am considering taking some friends when I've moved in with my bf (as it's near where we shall live). So there are many things about the future that are looking bright, even though it is uncertain, and I do believe things will work out for the best as they always do.

An Amazing Experience.

2010-05-26T09:06:00.000-07:00

I had an amazing experience yesterday. I woke up with a normal pulse!

I started taking liquorice root as I read a number of posts by people on the DINET forums who were saying how it had helped them.

For me to wake up with a normal pulse just sitting was amazing (usually, thanks to Inappropriate Sinus Tachycardia, I can always feel my heart racing) but I also checked out how I felt standing, and I felt fine... so of course I put my bp cuff on and checked my vitals.

112/69, pulse 85

So then I RAN upstairs and checked my vitals again.

110/75, pulse 112

After that I brushed my teeth (standing) for a couple of minutes and then checked again.

104/80, pulse 70

I could NOT believe it.

The strange thing was, I wasn't feeling good at all- I felt really drained and woozy. But, upon seeing my heart rate was so normal, I decided to finally do all the cleaning and tidying I'd been putting off. So,

I cleared away the clothes and coat-hangers I'd left out, I tidied my desk, I hoovered my room and the dining room and the conservatory, I danced, I did energetic knee lifts, I danced while lifting weights, I did sit ups and as if that wasn't enough I did 250 steps on level 3 resistance on my 'air stepper exerciser' and after THAT I ran on the spot for 10 minutes without stopping.

All while monitering my heart rate and keeping it around 140-160bpm.

Today, I feel exhausted and my body aches- but I haven't crashed. I'm not having a 'potsy' day or feeling awful- just very, very tired from all that activity and achy from the sit ups and weights.

My heart rate hasn't stayed normal today but the peculiar thing is I am still getting some normal readings- for example although it was elevated this morning, this afternoon (after my second dose of liquorice) my sitting heart rate was 60bpm. (It's usually 80-90).

My bp has been fluctuating a lot but I am getting some better readings with that too- in the 100s rather than the 80s for the systolic and in the 60s, 70s and even 80s for the diastolic rather than the 50s and 40s.

I went to the Drs today and got my prescription of diltiazem, but I haven't bothered to take one yet and may not if these good results continue.

It's strange and I am not getting my hopes up too much, but it's the most positive result I've had in trying something new, ever.

Summer at LAST!

2010-05-24T11:08:00.000-07:00

Okay so just a week ago it was cold enough for frost (stupid English weather and climate change- May should NOT be that cold!!!) and now it's like it should be- hot and sunny and lovely.

Okay, actually hotter than ideal for me but that said I do better in the heat than cold. I can sit under a parasol or in the shade if it's too hot, but I get to be in the garden, which I love.

So, this past weekend was really nice. POTS wise, I am feeling stronger. I still get symptoms of fatigue and dizziness but I don't feel as weak as I did in Autumn/Winter when I had my 'crash'.

Things between me and my bf are great too- I think he is learning about it more as I am learning to be more open and admit when I feel bad instead of trying to cover it up and push myself through it when that can make me feel worse.

Planning moving in together is exciting and I can't wait til he gets the keys and we can start decorating the place and making it OUR HOME.

Oh, and I can apply for the graduate teacher program in July. It sounds sooo hard and complicated to get into. Competition is fierce and given that I've never worked, I'm not confident about getting in. But at the moment I have this feeling that 'anything is possible' and so I figure that even if I don't get accepted, I can get a job in a school as a teachers assistant and work my way up to the higher level and then re-apply for the GTP and THEN I might get accepted after having some experience of actually working in a school. (It does say priority is given to support staff in schools- I've done that for years but only on a voluntary basis so not sure how they will view that).

I'm trying liquorice root at the moment as I've read a number of anecdotal reports of how it's helped POTsies, and I feel so much better to not be in a drug induced haze of fatigue that I'm hanging fire before trying another pharmaceutical, especially as it's another usually prescribed for low blood pressure with effects of lowering heart rate also. I'm going to see if the liquorice helps with fluid retention and raising bp (as it's meant to) and see if that has any difference on my hr. If not, well I'll introduce the diltiazem as well. I'm just concerned about taking that in case it could reduce the strength of my heart over time- and that's if it doesn't send my bp way too low again and give me that rotten fatigue like I felt on the BBs.

I soooo need to tidy, my room looks like a bomb has hit it as I started taking clothes out of my wardrobe to give to charity and then my bf rang me and once I stop an activity, I lose my energy and then can't get started again so right now there are clothes and coathangers everywhere and I don't currently have the energy to clear them away! Hopefully tomorrow.

I can't understand why I can't keep things tidy when I prefer things to be tidy, and it would make life sooo much easier because then I wouldn't have to keep doing these big, energy draining clean ups!! I am hoping when I've cleared away a lot of stuff I'll have more space to keep things in order. Practice for moving in with my bf who is so tidy his idea of 'mess' is a newspaper on the table and a drinks mat not put back in its holder. :/

Felt well today!

2010-05-21T10:37:00.000-07:00

This is most peculiar! I will never understand this disorder. Last night I went out with friends (it was lovely to see them and catch up, I've been more anti-social than usual the past few months with feeling so lacking in energy), ate late, drank less than I would normally (water I mean!) and went to bed late, so I was expecting to wake up this morning feeling awful and... I didn't. On the contrary, I felt better than I have in ages.

I always feel better in the summer/heat. I assumed it was a SAD thing and that I like getting more light... but I'm suspecting there could be more to it than that, since last week it was VERY cold for the time of year; as soon as it's warmed up I feel lots better.

Makes me wonder if my fatigue could be to do with vitamin D deficiency, and getting some sunlight on my skin is alleviating it. Although I can't figure out why my blood pressure was so much BETTER today in all this heat. It's supposed to make it lower?!!

I'm very puzzled. POTs is so frustrating; I like to understand things and I can't understand why the heat would make me feel BETTER?!!! I also felt a lot better when I was on holiday too.

Also, despite still having tachy when moving about, when at rest my heart rate has felt, well, normal. Now, normal for me is still probably high but I can usually feel it banging away all the time so it's really bizarre that I can't, and I'm not currently taking any meds for it either.

So strange. But hey, whatever it's done, I am pleased!

Shame it can't be attributed to the delicious melting chocolate pudding I ate last night. I would love to have a healthy reason to eat one of those every day!

in need of a vent...

2010-05-20T01:07:00.000-07:00

Okay, so it looks like I'm not going to be able to try DDAVP. Despite it being listed on pots place as being helpful, and despite me having symptoms of dehydration, excessive thirst, urinary frquency, and low blood pressure (all of which it can help to alleviate), because I don't have what it's PRESCRIBED FOR (diabetes insipidus) it looks like I can't have it. Drs seem like they aren't willing to prescribe stuff "off label".

I have a feeling I'm going to be one of the worst patients; taking myself off my medication after a month because I feel so dreadful, asking to try medications I'm "not allowed", asking for blood tests for this, that and the other on a quest to rule out further problems, then questioning the Dr on what medications I am prescribed before agreeing to take them!

I just keep in mind what Bernie Siegal said in his brilliant book whose name I have forgotten, but it's about Drs, patients and 'healing' (living as well as you can with what you've got): the people who are the most 'difficult' patients, who aren't passive about their treatments, don't take things lying down, but question and are assertive and inquisitve, most often end up doing better.

My philosophy is if a medication is making me feel worse than I do without it, there is no point taking it, I just hope my specialist doesn't give me grief for rejecting the beta blocker so quickly (feeling like a zombie for a MONTH is long enough for me!!!) and wants to try me back on it, or a smaller dose, because I don't even want to entertain the idea of beta blockers anymore as I read they put you more at risk of diabetes!

I'm going to seem like such a difficult patient if I start refusing my medication...

BUT dear Bernie was a wise and very compassionate Dr so he must be right- difficult patients do better, so I'm going to stick at being awkward. It is after all MY body, I'm not putting anything into it I'm not happy about!

New Mood New 'tude

2010-05-18T02:08:00.000-07:00

That's attitude btw.

Okay, so I haven't blogged in a while. In a nutshell, the beta blocker I was put on turned me into a total zombie. Shame, because at first I felt better. I could stand and not feel 'weird', I wasn't as fidgety and 'wired' all the time (which I've realised is like the feeling of being constantly stressed. That's how my body feels, even though mentally I'm not stressed at all).

It's been unpleasant having those symptoms creeping back, but I've chosen them over the zombie-state. (ZS). ZS was making me even less of myself than POTS ever has. It was stripping away the essence of me- my personality, my enthusiasm for things. I decided it just wasn't worth it.

Also, I must admit I am a little bit of a pill phobic. Although 'phobic' is the wrong word. I'm not afraid to take pills, I just don't like the fact that nobody can say for sure the long term consequences of taking pills to assuage the symptoms when no one knows what causes the disorder. I guess I'm not afraid of the pills per se, but of the unknown long term effects. Of getting 'something else' on top of the not-fun-caboodle that is POTS!

So I've pretty much decided, as long as I can function okay without pills then I'm not going to take them. I had been hoping that a 'pill for POTS' would improve my quality of life (like the pill for my overactive bladder does) but the first one I tried didn't, and the next suggestion by my Dr is not something I'd be comfortable trying (it works directly on the heart and has some very bizarre potential side effects- I'm not keen on the idea of things affecting my heart because of my belief that the excess heart rate is not the problem; I'd rather take a pill that works on something else [blood pressure or circulation for example] and slows the heart as a consequence) So, I think for now at least, I'll do without. Although I am waiting for some blood tests (possibly for Diabetes Insipidus, though they couldn't tell me) to see if I can take DDAVP. I requested this due to my constant feeling of dehydration (I should NOT be thirsty when I drink 4 litres every day) and to help my wacky bladder. It's a case of waiting on the results so 'watch this space'...

So, what have I been doing whilst I was a doped up zombie? Well, deciding on my future career, because I AM going to have one for as long as I can last, POTS be damned! My plan is do the training, try the job full time, if that's too much go to part time. I'm lucky that I trained in hypnotherapy as I can do that from home on the days I'm not at work, if I go to part time.

So, it's only taken me 9 years to figure that out. 9 must be my lucky number, it took 9 years for me to get diagnosed as well. Maybe I should drink NINE litres a day, then I might not feel thirsty?

I have also been out walking a lot. Strangely, I'm a somewhat 'Paradoxical Potsy' in that, even if I feel dreadful, when I walk I start feeling some improvements in my symptoms. I say some because I'm always tachycardic, I'm always tired to some degree, I have this 'background dizziness' that I'm just used to and that only shocks me when I get The Helium Balloon(tm) but that tends to happen when I'm sitting, more often than not. After walking a few miles, I'll get a headache, sometimes rotten neck pain too. But, I feel more ALIVE. More awake, more alert. I think getting my blood flowing has something to do with it. When I'm sitting or resting my blood pressure falls and I feel a bit bloody horrible. When I'm walking, I get other nasties that make me THINK 'oh god I want to sit down, I can't go on much longer' but go on I do and sometimes, well sometimes it's not pleasureable but at least I'm not deconditioned, but quite often it is more pleasurable than not (now the weather is warmer and my hormones are calmer) and I get to see nice things and take pretty pictures. Oh, and I also get a sense of achievement. If it wasn't for my boyfriend I know I would not be pushing myself as far because I'd have no reason to, but walking with him I do, so that's what I've been doing. If not for him, I might have gotten into a rut of thinking I was 'too tired' to do it and not realised just how strange my body can be- sometimes no matter how bad I feel before the walk, I can still walk- not always as far and certainly not with the zest and vigour I'd like to be walking, but I can do a lot to say my heart is doing what it's doing, and for that reason I actually feel like 'Hey, I'm superwoman. So, this walk might not have made YOU feel tired, but you come back to me and do the walk when you have a heart rate of 140-180 and then I'll be impressed.'
To other non Potsies I may seem 'weak' or 'unfit' for being so tired after what's a relatively 'easy' walk. But to myself I know that every walk I do is an amazing feat of endurance and I'm proud of my body for carrying me through it, despite all the other stuff it's got goin' on!

So, that's what I've been doing- amazing feats of endurance. And lately, I've been enjoying them. Me and my boyfriend are exploring a new area of wonderful natural beauty and it makes me glad to be alive, whatever the state of my malfunctioning nervous system.

So, with that in mind, I decided to change this blog a little. Rather than writing about the POTS itself, and how that has affected me, I've decided I'm going to write about the lovely things I've felt, done, seen and experienced DESPITE dysautonomia. I'm not going to think about the spoons I've lost because of it, or the life changes I've had to make. I'm going to think about the better person I am, how I've learnt to appreciate the 'little things' that so many take for granted.

My life is full of riches, because I take the time to smell the roses. (Actually, it's Gorse. If you have Gorse growing anywhere near you, you have GOT to smell it. It's the most delicious smell- like coconuts mingled with a sweeter scent. It reminds me a little of palmolive milk and honey hand wash- only it's better because it's natural).

So, I'm taking the time to smell the Gorse. If my nose gets prickled in the process a little, well never mind- it's worth it. Every Gorse bush has its thorns.

So- the new mood and the new attitude for this journal is celebrating the beauty of life, DESPITE dysautonomia. Because it can't take away my appreciation and gratitude for the beautiful and enjoyable things in this world. And the amazing thing about the mind is, you get more of what you focus on. So focusing on what's amazing and wonderful means that my life will be amazing and wonderful DESPITE dysautonomia.

So from now on, I'm going to share the great things I've done, seen and experienced DESPITE dysautonomia. I will of course still share from time to time how I'm feeling and how I'm doing. I'm not a one dimensional Polly-anna. I still struggle and get down and frustrated at times. But more importantly, I 'bounce back', I'm tenacious, I'm strong even when my body is weakened.

DESPITE dysautonomia, I'm a wonderful person and I can have a wonderful life. So, I'm going to celebrate that.

Decision made and really good news

2010-05-11T08:13:00.000-07:00

Something very exciting happened just after I pressed POST on that last blog- my boyfriend texted me with great news- we have a place together! Okay so neither of us has moved from our respective homes as yet but it's really exciting and we're sooo looking forward to making a home together.

In a lot of ways, this is what has been prompting me to make this 'career move'. Because such good things are happening in my personal life, I want to make my work life good too.

So, I am going to go for the graduate teacher training. I have plenty of time to 'experiment' with medications to best manage my condition. (At the moment, I'm not sure if I feel better with the beta blockers or not- in many ways I do, but I also feel really tired a lot of the time, a different kind of fatigue than what I was used to, and I don't like it). I'm hopeful that with time, I'll find a balance that helps more than hinders me. If not, maybe I can manage unmedicated- since I did for 9 years. We'll see anyway.

This allows me time to move house, get settled in, and keep working my part time job, and perhaps add in some further voluntary work in school. I was considering getting a job as a teachers assistant but I might be better off just sticking at what I know and am used to, as I'll be going through a lot of changes as it is with moving, and travelling back here to where I live now, to do this job from the same premises. I figure I can spend some quality time with my Mum when she's retired, maybe holiday/travel a bit with her, and certainly with my boyfriend. And above all, try for improvements in my energy levels. All my other symptoms I can cope with, I just wish I had more energy and focus. Hopefully there will be time to find the right treatment for that; shame I can't afford acupuncture every week as that used to really help boost my energy! Maybe if I have it once a month or something. There's plenty I can try anyway.

Even if my energy DOESN'T improve, I think I'd still enjoy to be busy. Sometimes when I am busy helping at school, I still feel tired but it's different to the fatigue I feel when sitting at home like I am now. That just makes me want to lay down and have a sleep. Sometimes at school I can be really tired but still get enjoyment from being there with the children, so I hope this is how I will feel when I start the training. No doubt it is tiring but I prefer to be tired from doing something worthwhile than just sitting on my butt while my life passes me by...

So, the decision has been made, finally. Come September 2011, I'll begin training to be a teacher (that's assuming I get accepted! And I am going to assume that because I like to be positive). September 2012, I should be qualified, ready to work. So another two years until I start work 'properly' lol. Although doing the GTP will be like working because you get paid a wage to do it whilst you train.

It's all good and I am happy, I just wish I could feel a little less wiped out! My fatigue intimidates me and often makes me wonder if I am capable of doing these things I want to do. I won't let it stop me from trying though. I just wish that I could feel the energy and enthusiasm I know I have in me! I think that above all else is what I hate most about POTS. It just totally ZAPS you. :( I'd give all the money I had even just to feel 'okay', not so drained and listless.

Semi-plan...

2010-05-07T03:46:00.000-07:00

Been thinking and researching on the "career options" still.

I found something I'd never even heard of called the Graduate Teacher Program. It enables you to train to become a teacher while you are working in a school as an unqualified teacher.

It's an option that appeals to me in a way because I'd like the experience. I'm getting fed up of academic study now, and whilst this will of course have elements of that, it sounds more "hands on". It's also an advantage to get payed whilst learning.

If I did this, I wouldn't be able to start until September next year, 2011. BUT if I do the part time PGCE, I still wouldn't graduate until June 2012. So, I'd graduate at roughly the same time... yet I think the GTP could be the better option for me. Yes, it's full time so in a way that's harder BUT... I'd be getting (I feel) a better experience. I think I'd feel a lot more confident about getting a job after working in a more hands on way, instead of taking the more academic route again. Despite the fact the academic route involves placements, I like the idea of being at one school for the majority of the training.

So, it's another option I am seriously considering. I could finish my diploma which is coming to an end now, have the rest of this year 'off', go on my Peru adventure in November, move in with my boyfriend at some point later this year or early next year, and live off my savings until I start in September 11 and keep doing my part time hypnotherapy work from here, at my parents. That way, I could spend some quality time with my Mum but get used to living with my boyfriend, before starting the program of work. It might give me chance to get my health in a better place and get a bit fitter too.

UGH!

2010-05-05T01:30:00.001-07:00

I'm so frustrated. I don't know what I want, because it's all dependent on how I feel with POTS and lately I feel exhausted every day. I mean, I'm sure the bank holiday weekend hasn't really helped: I went out Friday night and even spent 3 hours standing up, dancing. I enjoyed myself but hello exhaustion and the exacerbation of my sore, swollen throat (not sure whether its the infection I got over Easter that my body hasn't quite fought off, a new one or an allergy thing). If I could have rested all weekend I'd probably have been okay, but weekends are the only time I get to see my bf (because I am too busy and tired in the week, working part time and finishing this diploma). My bf loves walking. I do too, but he's super fit and so I nearly always end up pushing myself. I do this because I am stubborn and I think it might just help in the long run, and at least I'm not getting de-conditioned... but man, I am sick to the back teeth of hills. I'm okay walking on the flat but as soon as there's even a slight incline and I'm in tachycardia central, it's like the beta blockers don't touch me anymore.

I'm also having trouble with my hydration because by bbs and my bladder meds interact strangely with one another, so my overactive bladder med isn't as effective, so I'm peeing out what I try to put in. I'm trying to get in at the Doctors to get some DDAVP as my pots Dr said I might be able to try it (I'd better be!) and I feel like it would really help as I believe a lot of my symptoms are because of the fact I am always dehydrated, or verging on it, no matter how much I drink.

So, I just seem to spend every week feeling like sh** just so that I can push myself through another weekend. Don't get me wrong, I always enjoy time with my bf, but I sleep terribly (I just cannot get used to someone else being there beside me, even if I get to sleep I wake up numerous times because I am such a light sleeper- and I've tried all sorts of herbs and OTC sleep aids). So I lose sleep, then push myself through long walks, then spend the whole week recovering to do it all again the following weekend.

I'm feeling even more exhausted lately than normal as I just can't seem to recover from this infection I had. My throat hasn't got back to normal and after my busy bank holiday weekend it now feels worse.

I felt relatively human for about 10 minutes this morning, then the feeling of exhaustion kicked in again. If just sitting at the computer browsing for pleasure is so tiring, how can I be even thinking of putting myself through 17 months of hard studying?

I want to be able to do it, but just getting out of bed this morning has exhausted me. How can I drive to train stations, sit on trains, wait for buses, walk to classes, concentrate and take information in, walk and wait for buses again, wait for train, drive home and then do the same thing again the next day AND whatever work assignments I am expected to do as well??? I WANT to be able to do it, but right now I don't feel capable. I don't know whether to bite the bullet and push myself and hope that I somehow find the strength... or whether to admit defeat and accept this lesser job.

It's the studying that scares me the most though, not doing the job. If I could just somehow get through the 17 months of study and get the qualification. I know the job itself isn't easy (both my parents are teachers, I know a lot of teachers through volunteering at Mum's school, one of my best friends is a teacher) but I think I could do it part time and keep doing my hypnotherapy the rest of the time. I'd love to do that!

So maybe I will have to push myself through the scary studying part of it.

I just really don't want it to affect my relationship. I could do it if I was single and still living at home and all my spare time when not studying could be spent on sleeping/resting. But I can't live like that now.

All I can hope is I can get on this DDAVP and it helps me get hydrated and improves my symptoms further. I can also hope that this exhaustion lately is because of the infection I have/had and is just a temporary exacerbation of worsened fatigue.

At least I have time to think things through I guess.

I want to do the course but I'll be frank, I'm terrified I'm taking on too much.

More on my potential crazyness...

2010-05-04T08:25:00.000-07:00

There's a 'part time' course that starts in February next year.

That would mean I'd complete this diploma any day now (one more project to submit!). Have the summer off. Probably the Autum and the Winter too. Go to Peru for 3 weeks for the 'holiday of a lifetime'. Get home for Christmas, holiday with the family. Get home for New Year... and work hard until July the following year (2012) to get this qualification.

The alternative depends on how long the full time course that starts in September 2011 is. If I graduate at the same time, I might as well wait until September and do it full time, because this course is in my locality. The part time one would involve travelling by train two days a week which is okay in theory but I don't travel well when I'm tired, and living with dysautonomia is tiring even WITHOUT taking on a challenge like this!

But then for the full time one I'd still be driving in every day... and maybe, just maybe, 'part time' would be easier on me. 2 days to study, the remaining days to rest and do the work. Because if I am doing 7 days a week of classes, when am I going to find the time and energy to do the work?? I really don't know if I could handle a schedule like that. :/ Maybe I am better off travelling out of town.

Wow. I seriously have a lot to think about.

Maybe I'm crazy, but...

2010-05-04T07:16:00.000-07:00

I keep looking out for learning mentor jobs, but there haven't been ANY. So rare.

Teaching assistant jobs are not very well paid and the government might be axing them altogther, depending on who comes into power, so I don't really want to get into that.

I'm seriously considering doing my post grad certificate in education, which would allow me to be a teacher. I nearly did this in 2008 but chickened out. I was afraid that I wouldn't be able to 'hack it' with my very low stress threshold.

However, now I'm diagnosed and being medicated, I'm a bit more hopeful that I can cope better with things. And what has always really made my heart sink is the feeling that I've been under-achieving due to this illness. Maybe if I actually gave it a go, I could do it. Sure, it might be hard, but so was getting my degree when I was undiagnosed and an emotional wreck having panic attacks and verging on agoraphobia because I didn't know what was wrong with me. If I can do THAT, I could do this, I know I could. It's just whether or not I want to choose to put myself through yet MORE hard work.

I'd like to try and be a teacher. I wish I could try it BEFORE doing the course, LOL. But I can't. I have to do the course first, and it's doing the course itself that scares more more than doing the actual job, because pots has made academic stuff so much more of a struggle for me, when it used to come so naturally.

But if I don't give it a try, I might end up regretting my under-achievement due to being afraid to try. If I tried and failed, then at least I tried. But if I don't try, how can I give myself the chance to succeed?

The course for September is full anyway, so I would have to wait until September 2011 before I could even start! So, that gives me a while to consider it (I'd have to apply this summer), and plenty of time to get my meds for the pots sorted out and working! During that time I might get a job as a TA so I can at least get used to working full time and save some money, and then I'll have time to see how I cope with that and that should give an indication of whether I'd be able to cope with the extra responsibilities of being a teacher.

One reason I didn't go for it in 2008 was because I didn't want to give up my hypnotherapy. But I think if I worked full time in any job I'd most likely have to give that up, as I'd need time for myself and wouldn't want to completely drain all my energy! Paradoxically, if I were to qualify as a teacher, I could earn more being a part time teacher than a full time teachers assistant, so there is the opportunity for me to do both teaching and hypnotherapy together, which I like the idea of- even if I couldn't do that right away and had to get full time experience in a teaching role for a while, the fact it's an option is appealing.

To think of this, I feel excited and quite motivated. The thought of all the work is scary, because I'm already tired of academic work, but I will get a bit of a break at least. And my Mum will be retired then and could help me out! (She is a teacher).

I just think there stands to be more opportunities in teaching than in being a TA or learning mentor. There are many more jobs, better pay, more flexibility and the chance that, if my health were to improve, I could take on more responsibilities if I wanted to.

Plus I think starting in September next year would be a good thing as I could have "a year out" to move in with my boyfriend, get used to being more independent, and maybe even work a job too to get some more money saved up.

I've faced and overcome challenges before, maybe I'm ready for the next one now...

It's VERY scary, I can't even be sure at this stage if it's 'the right thing' but at least I have time to think it over.

Out of the loop!

2010-04-26T13:38:00.000-07:00

I haven't posted in a while, because I went away straight after having my tests, and with various things such as that 'cold' I felt like I was getting becoming a throat infection and irritating cough that caused me to lose my voice, along with getting 'trapped' abroad on holiday, I am way behind in 'the real world' and have a lot of catching up to do- with clients and college work. The weekend was spent with Lee having a lovely time seeing one another again after my delayed return and going out in the countryside- we found an absolutely WONDERFUL place to go out walking, and I have been thrilled so far with how much better I already feel since starting my meds.

I'm still determining to do what I can to help other people- my aim is to spread optimism, hope and positivity. I went through a very rough period of depression a number of years ago (it was caused by fear, not knowing what was wrong with me, why I was experiencing such terrifying feelings) but I have discovered that with the right attitude, the human spirit is strong and cannot be broken. So I'm still going to keep writing my blogs at DARE and I'm also writing for the dysautonomia connection blog. If stuff that I write reaches others and gives them some hope or inspiration then I am happy. I'm still 'meeting' wonderful people online too, who add to the inspiration and to my desire to keep doing what I can do to give people hope. One voice may only be very quiet, but together we can start to sing the song of hope and optimism- which is why I am so pleased that the dysautonomia community is coming on in leaps and bounds. I'm happy to have the DARE blog and to be a part of the dysautonomia connection one too, and am looking forward to getting to know more new people through the forums. It seems to be a good time for connecting with fellow dysautonomia sufferers, many of whom are inspiring each in their own unique ways. It makes me feel glad to be a part of such good spirit and positive energy.

So, once I am caught up with the things I am behind on, I will probably blog more again both here and at DARE.

I'm an official POTSY!

2010-04-09T12:29:00.001-07:00

They were BRILLIANT. I didn't have to do the tilt test as I stood up for 2 minutes after laying for 20, my heart rate climbed to 142, they told me I could sit back down as I'd already "passed" the criteria for POTS and so there was no need to go on the table. I was diagnosed in an hour and a half. (I did other tests, standing and sitting with my arms folded 5 times, some cognitive tests joining numbers dot to dot, then numbers to letters, squeezing a device every 10 seconds as hard as I could and a valsalva- that got my heart racing and I could NOT get it up to 40 whatever on the machine, let alone keep it there! [I just about kept it at 20]).

Everyone was so nice and friendly- I bought some creme eggs (mini ones in a packet) from a vending machine after and they got stuck, a lovely young nurse came out and bought some herself, just to get mine to dislodge! I've never been to a city where people are so genuinely friendly and helpful- everyone we encountered was like it, from buying a dress (I must be the only POTSY who goes shopping post tests, but really it was only because it was so bright I NEEDED sunglasses, so we called in a shopping centre, and I passed this gorgeous dress in the window and thought it suitable for my cousins baby's christening hehe)and asking the shop assistant for directions to people I 'met' in the hospital when using my phone to text/get online (a woman in a wheelchair who was being friendly and making sure her hubs didn't wheel it over my toes lol).

We walked down to the quayside and had a lovely lunch, then we found a settee tucked away round a corner in the place and I had a little snooze as I felt so exhausted. Then we walked back to the train station, sitting on a bench by the river on the way to while away more time.

I'm so glad to finally be diagnosed! I've KNOWN since I was 19 that there was 'something wrong'. Finally, at 27, I've had it confirmed what it was. And it's all thanks to two people on the butyoudon'tlooksick facebook group, who told me about POTS when I posted a vent about being frustrated with my overactive bladder and constant thirst. Were it not for them, I'd have never even heard of POTS and I'd still be in the dark.

I even hugged the Dr and the nurse when I left. It was just so nice to be treated like a HUMAN BEING instead of a patient, and on top of that, to be BELIEVED and taken seriously!

I need to get myself into bed and to sleep now though before my eyes can't stay open a moment longer!!!

Last one...

2010-04-08T13:12:00.001-07:00

So if all goes as I hope tomorrow, this could be my last post as an undiagnosed Potsy. I'm as sure as I can ever be that I have POTS. All my self tests have shown a hr increase of 40-50 bpm in 3-5 minutes of standing. I just need to have it confirmed medically now!

I feel like I am coming down with a cold though. I'm hoping it's just spring allergies but can't be sure, as I have been SO busy and really pushed myself, and this is what tends to happen when I do that, I just get some kind of common ailment, like a cold or sore throat, grrr!

Today was a lovely day, warm and sunny, I went over to Lee's and we spent time sitting in the garden together relaxing, it was so nice. I'm going to miss him while I'm away, but I am ready for a holiday- the sun and relaxation does me good. I've been waiting so long for this appointment, but the worst part of it wasn't feeling so weak and so ill, it was the fear I had that it would come between me and Lee (since it was only early days when I started flaring up again) but he has been fantastic since I explained everything, really caring and supportive. So that has helped me get through these past few weeks of waiting for this appointment!

I just hope I get my diagnosis tomorrow. I will be happy to be told I have POTS because then, at least I have a reason for all my symptoms, at least I KNOW for sure and certain what I am dealing with. Then I can concentrate on spreading awareness and hope, because no matter what I am going to make something positive from this. I believe everything happens for a reason, and perhaps the reason dysautonomiacs are such good, strong, kind people is because we were brought to it to help spread a positive message of hope and reassurance to anyone suffering with it and other rare illnesses.

Even if I didn't get the POTS diagnosis though, I still think my IST is a form of dysautonomia, so I'd still make sure to be part of the dysautonomia community and help with spreading awareness and hope. But to be honest, I'd be SO surprised and shocked if I didn't get diagnosed with POTS. I mean, every time I checked out my own heart rate it did what it's gotta do to get the diagnosis, and that was without all the fancy stuff like beat to beat blood pressure monitering etc.

I just hope that I find out tomorrow, and soon tomorrow, so I don't have to be in the dark for too much longer.

I'll report back when I can!

Of brilliance and stress

2010-04-07T12:09:00.000-07:00

I had a wonderful Easter with my boyfriend. I managed to do lots of things and haven't suffered too badly for it; I think now my hormones have settled down, I am getting stronger. I still get tachycardia and fatigue, but I'm not as shaky and weak, as I was when my hormones were playing up.

I worked out I did 16 miles of walking over the past few days! It's strange and somewhat paradoxical, but it seems the more exercise I can do, the better I feel apart from the fatigue. It's finding a balance, because if I get the balance right, I feel tired but not too tired to keep going, thus I feel better because I am being active and getting exercise, but if I do too much, I get shaky/weak and feel worse... I'm still figuring out what is 'too much' because I thought everything I did these past few days was going to end up being too much (but my philosophy was I am on holiday so I can rest afterwards and it'll be okay) and yet I'm still going... and feeling okay aside from being very tired!

Spending longer with my boyfriend than usual was fantastic and I've really missed being around him since I came home. Seeing him tomorrow once more before I go on holiday abroad. Also before I go for my tests on Friday... might finally get the tilt table test and potentially the correct diagnosis, that's assuming my IST diagnosis is wrong or at least not the full picture, but we shall see... I'm very scared, almost too scared to get my hopes up, but I AM hopeful that even if it's not POTS but IST that I have (and to be honest I'd be surprised if it was because every self poor mans tilt test I have done has indicated POTS as my heart changed by at least 30bpm, often more like 40 or 50), the person I am seeing Friday will be better equipped to treat me than the rubbish cardio I saw. Who incidentally has caused me to be taken off my overactive bladder medication that was helping me, just because it CAN increase tachycardia. But he said that was MY CHOICE based one which symptoms I felt were the worst. The increase in tachycardia isn't as bothersome to me as the bladder dysfunction and frequency and discomfort I get when not on that medication so I am really annoyed and have got to go to the Doctors tomorrow to see if my GP will go against his advice and let me back on the medication, but whether she will or not I don't know, so I'm really cross about it. I saw him back in JANUARY, so why they have taken me off the darn meds right now I don't know, it's ridiculous.

Ugh.

I just can't wait for tomorrow when I am seeing my boyfriend again so I can forget about all this med stuff and test stuff for at least a few hours. Irony is it would have been longer had I not had to come back for the bloody Doctors appointment to try and sort out this bloody debacle!!! GRRR.

I sat funny and trapped some wind...

2010-04-01T12:32:00.000-07:00

and it REALLY hurts and I am burping like a trooper!

I have finally decided what I am going to do.

I am going to finish my diploma. Work shadow my learning mentor friend for a few weeks one day a week to get some experience of the role.

Then I can draught up a CV detailing my qualifications and experience.

If no learning mentor jobs come up, I will look for (and eventually GET) a job as a TA to be doing in the meantime, so I can gain further 'on the job' experience of working with young children.

I will continue to do this until I find a post as a learning mentor.

I believe this will make me happier than being a teacher would, because I'd be focused more on helping the children who really need it. Those that are struggling, disadvantaged, etc. I think I'd find it really rewarding. And I don't think I'd be selling myself short doing it either, as there are opportunities within the role to progress, to work with others in the community providing for children as a team, and to even become the manager of a team of mentors if I wanted to. There's plenty of opportunity there, however I think the more 'simple' role of working with the children would make me happiest, but knowing that there's chance to progress further to a more managerial sort of role if ever I felt I needed a further challenge is good to know.

:)

Finally I'm getting somewhere!

Why is making a decision SOOO HARD?!!!

2010-04-01T09:07:00.000-07:00

Okay, so I decided I'd like to be a learning mentor.

There are some spanners in the works though...

I'm not sure if there's much availability of that job in primary schools...

So, second option is get a TA role, train as a higher level TA (better pay so I can afford to move in with my boyfriend) and then look out for a learning mentor job.

But I keep having this little nagging voice saying why not just do what you nearly did in 2008 and do a Post grad certificate in education, and be a teacher?

I'm just not sure if it's what I really want.

My problem is, I am very intelligent, so I could be a teacher if I wanted to be. However, after being ill, I've also lost confidence in my ability to handle stress. My Mum and Dad are both teachers, so's one of my best friends, and a lot of my Mum's friends through work are (where I help) and everyone seems so often very stressed!

So my dilemma is, do I use my brain to its full capacity and become a teacher which might mean signing myself up for a career of dealing with stress?

OR do I do what I originally planned to do and go for the easier, less stressful option, but one which I might end up stressed over for different reasons, like having to manage on a lower income, not having a good pension, worrying about whether I will accrue enough savings to live comfortably when retired etc.

I really just can't decide what to do for the best! I almost wish I hadn't let my Mum talk me out of doing the PGCE in 2008 and then I'd already be a qualified teacher now. But would I enjoy that, or would I be hating it if I was? That's the problem- I just don't know!

I suppose what I could do is get a TA job, get my HLTA status and see how I go with that. If I enjoy it, if I feel fulfilled, or if that nagging voice is still there teling me 'go further- go higher- you could do better'. IF it is still there, well I suppose it's never too late to learn. It'd only take me a year of hard work to become a teacher if I chose to. So if I work for a year or even a few years as a TA/HLTA and then decide I want to take it further, I can.

If not, if I really enjoy my role as a HLTA or find a job as a learning mentor in a primary school, then I won't have any regrets.

Yes, that sounds like the best plan. I suppose what's been nagging at me are worries that I could have done 'so much more' if I'd pushed myself higher, and that if I went for the less stressful option, I might just feel bored or like I'd let myself down, like I was underachieving.

But I feel equally uncomfortable about the idea of pushing myself into being a teacher only to discover I find it stressful and draining!

So really my best bet would be not to panic over my age as it's never too late, but get a TA role, get my HLTA status, get a FEEL for doing that work... and if I like it- great! If I don't, if I still get that feeling 'I could do more, I could do better than this' well THEN I will push myself that bit higher again, and do the PGCE. It doesn't matter if I'm in my mid or even late 30s! By then education might even have changed and be run much better without all these stupid tests and targets that are really what put me off getting into teaching in the first place.

I don't need to make rash decisions just because I'm 'getting on in life'. My boyfriend just got a degree at 38 and it took him 7 years because of how he did it part time whilst working full time! Plus he's not even 'academic'. So that's an inspiration. I was always academic and a high achiever, so if I choose to go beyond being a HLTA and decide yeah, I actually do wish I was a teacher, then I could do that.

Actually, even though it takes longer, it's probably better doing it this gradual way, rather than throwing myself in the deep end. That way I can test the waters of being HLTA or learning mentor if that comes up, and if I enjoy that I don't even have to swim to the deep end! But if I'm dissatisfied, I can always swim to the deep end and at least I'll have had the experience of being in the water for a few years! Because as of now, I've only been paddling. So I might as well get in nice and gently and learn to float and keep my head above water first, than dive right in the deep end when I'm not even sure it's what I want.

I suppose a decision doesn't have to be made all at once but can be made incrementally, with little bits of experience here and there. If I get used to working full time and end up liking it and wanting to push myself to learn and achieve more then I can. If I'm satisfied with where I am, I won't need to.

As long as I am working with children I think I will be happy. And if for whatever reason living with my boyfriend turns out to be living beyond my means, I can always move back in with my parents. It's not like I am going to end up on the streets with a begging bowl if I don't earn the salary of a teacher!

I need to decide based on what would make me feel happiest. I'm not sure on what that would be yet. I'm not sure whether my fears about being 'too stressed' if I were a teacher are based on all the negatives I hear from those around me and not on what I really want if I thought more positively. But I can find that out as I set foot into the world of working in a school.

The point is, if I want to go for it then I can, there's nothing to stop me. And if I choose not to, if I'm happy with a 'lesser' role as an assistant or mentor, there's no shame in that.

Update on my career investigations...

2010-03-31T12:24:00.000-07:00

I defintely want to be a learning mentor. It sounds excellent!

I don't however want to do a 3 year degree. I already have a degree, even though it's in an irrelevant subject. But because I do have that, I can do a masters degree (1 year) in Learning and Teaching :-0 ! It won't cost as much money (or TIME! which is just as precious lol).

In order to do so, I'll need a job in a school. Unfortunately, the spanner in the works is that learning mentor jobs are hard to come by. My friend is one, and she was a TA first for a while- so here's my plan of action:

Complete my diploma in childcare and education. Set up a time when I can visit my friend in her school (maybe one day a week or something) where she works as a learning mentor, and work shadow her. That way, I can put down on my CV that I've had some experience as a learning mentor assistant.

Get a job as a TA. Going to ask the headteacher at the school where I've volunteered the past 5+ years if she would consider creating a vacancy for me. If not, I'll do everything I can to find one somewhere else.

Apply for the MA- I think it's a working practice based course so you need to have a job in a school first, so I might not be able to apply until I have a job, but fingers crossed if the head is willing to give me one, I might get one soon or if not this school year, I could at least say I WILL have one by September.

Keep my eyes open for a learning mentor position. If I'm doing an MA I will stand out above other candidates so give myself more chance of getting the role. Plus, the learning I will do whilst doing the MA will add to my skills and confidence.

I might be 27, it might have taken me a LONG time, it might have been a rocky road of fear, self doubt, sickness and indecision but finally, now AT LAST I know what I want to do. So now I can start making the steps to get there and DO IT!! :D

I can't believe I'm even contemplating this...

2010-03-31T03:04:00.000-07:00

Okay so one of my biggest regrets in life is having been too ill back when I was 19 to get the sort of degree that would have led to a good job. Back then, I didn't even know what I wanted to do!

Recently I've been nurturing a desire to work with children, but I'd been considering a role such as TA. However, there isn't much chance for career progression with that, and being an optimistic person, I like to think that as I get a better handle on my health issues, I could progress up the career ladder. I don't want to be a teacher (though I could have been as I did get accepted a couple of years ago to do a PGCE- a years qualification for those who have a degree [mine is in rather a stupid, useless field]) but I would like to have some responsibilities and challenge. Maybe I am crazy, but I have let my health and my fears hold me back for so long... I'm starting to sense a rebellion coming- my inner spirit fighting back!

I saw on a job description of learning mentor a degree in learning, development and support that sounds interesting. I think being a learning mentor would be a great role for me. It's all about supporting children with learning needs OR about working with gifted and talented to push them... basically it's doing what I love, working with young children to help them. That's what attracted me to TA work but the problem with that, at least here in England, is they get a lot of menial tasks to do and if I got a mean teacher I could end up as the teachers dogsbody and not doing much of the stuff I love- the actual interacting, guiding and supporting the children.

Plus as a learning mentor you can progress with experience and even become a manager of other mentors. It just sounds exciting and as if it has more scope for opportunities. Okay so I may never want to be a manager but the fact that I could be if I wanted to be is enticing.

I wouldn't even need to do the degree to become a learning mentor, but the degree sounds attractive because it's one Saturday a month. 3 years (scary...) and done within work, so the tasks you get you are to do whilst you're working as a TA or LM already. So a big part of me right now- the ambitious, conscientious part that all but died when I was most ill, is crying out for the challenge.

And I might just heed its call.

Even though it's scary.
Even though it might take a chunk out of my savings.
Even though it will mean working hard for the next 3 years and pushing myself to the limit.

Because if I get that qualification, at least I am doing myself justice. I'm NOT too sick now to do it, I've just been too scared and too unsure of what I want. But now I'm having ideas again... this could well be the turning point.

I know it won't be easy. I'm not fully decided if I want to do it, I need to weigh things up carefully. But that part of me that regrets how much I wasted by not knowing what I wanted to do, by holding back because I was afraid... that part of me is wanting a challenge. It's just whether the rest of me is really up for it, or maybe it's just pie in the sky... I don't know.

I've emailed them anyway and asked if there's places available. I've talked it over with my Grandma, will do so also with my Mum.

I always felt like I hadn't done enough for myself academically, like I'd let myself down. Even though it's later on in my life, it's never 'too late'. My boyfriend has just gotten a degree at the age of 38! I'd be getting mine at 30 or 31 (depending if they have places available this year, or if I have to wait until next).

I feel like maybe I owe it to myself. I just hope if I do, I'm not taking on too much... BUT if it interests me and will help me in the career I've finally chosen... maybe I CAN rise to the challenge...

More thoughts.

2010-03-30T08:16:00.000-07:00

I don't think I want to give up the hypnotherapy. I like helping people. So another possible option- if I had a full time job at a school- would be to take down my website and just distrubute business cards in the local area. That way, I wouldn't get so many enquiries and people to treat, but I'd still be doing it.

Trouble is, I love my website. It's so informative and I think it's that which helps people to decide to come see me.

Agh it's so hard to know what to do. I have to balance financial needs with personal desires and of course, my health. Tricky.

Maybe I'd be able to get by on part time hours- every afternoon or even every morning a week, with clients as an extra source of income and a source of enjoyment/pride in what I can do too. I enjoy making a difference to people who are suffering for whatever reason and I think I might feel sad if I could no longer do that...

I suppose all I can do is try it out and see what happens. There are other confusing factors to it, like when I move in with my boyfriend- where will I work from? And where will I advertise? So there's a lot of questions that are unanswered, and it is pretty scary, but I will just have to take it one step at a time. Find the job in a school first (the previous one I posted about was actually really low pay so wouldn't be worth the cost and energy in travelling) and then, depending on where it is and what the hours are, and where I'm living at the time, decide on what to do about the hypnosis.

Living life to the full

2010-03-29T11:29:00.000-07:00

I think I'm coming to terms with being ill now. I have my IST diagnosis and I am almost certain I have POTS after self testing numerous times (because there's always a margin of doubt that makes me think- what if it's 'gone away' and I go to for my appointment with the specialist and look like a total fool- but that's more my ingrained fear of not being taken seriously after all these years of not being taken seriously because no one could pin down what was wrong!). Despite the fact I've always suspected I was ill, I still find myself feeling sad now that I know I am- but I think I am coming to terms with it more now. I am looking for the positives in it- something I always (thankfully) tend to do when faced with adversity. I am thankful for the new friends I have made and continue to make. I am thankful for the opportunity to use my hobby of writing and my determination to reach out to and inspire others.

I do 'normal' things (for instance, this weekend I went to a party, to my Grandma's for Sunday lunch, then drove to my boyfriends for the afternoon and tea with him, before driving home to bed) but never feel entirely 'normal' because I am always dealing with symptoms to some degree. But- that's okay. I won't let those symptoms rob me of my life. I'll keep living it, and be kind to myself/my body by resting and taking it easy as much as I can- but I'm not going to turn down invites to things. Even when they scare me just a bit because I don't know if I'll be 'well enough'. Even if afterwards I ache and feel exhausted. Because those are just symptoms- and at least I am living.

My boyfriend keeps asking me to go cycling with him, and the very idea of this terrifies me. TERRIFIES me! Because, the last time I did it, before I knew I had tachycardia, I found it soooo difficult. I was so slow that a child approximately 7 years old on a little bmx overtook me. Every muscle in my body ached and my heart was going crazy. But you know what? I cycled FOURTEEN MILES. Even though it hurt like hell and even though I was slow as a snail. The reason? I refused to admit defeat. I refused to give in, so I just pedalled- through the pain, through the tachycardia, through the rain and the cold and the frustration. I hated every minute, I felt like shit afterwards, but I still did it.

I don't really want to get back on a bike, because it was so unpleasant. But a stubborn, fighting part of me is saying- try it just once more. A shorter, easier ride (I didn't even mention how bumpy 7 miles of this ride was!!) on a nice day in warm sunshine- you might just surprise yourself.

So, maybe I will. If I hate even that, maybe then I'll sell my bike. But if I can cycle 14 miles in the rain on stony hard ground and still come out the other end okay, then I can go on a short bike ride on a nice day and see if it isn't nicer. At least I'll be strengthening my calf muscles!

So, I guess what I am saying is yes, I may be ill but I have an attitude. Being ill may slow me down, but it won't stop me. I'll be like the snail, slow, lugging around my 'shell' (whatever symptoms I may be dealing with at the time) but still living my life- and in the meantime, perhaps I'll leave a pretty silver trail in my wake. I might not be able to 'blaze a trail' but I'm content to just live my life at the pace that feels right for me, and those that take the time to really notice will see my little silvery trail and smile.

Every little thing makes a difference. You might not feel like it does or think that it does, but it does.

So yes, I've come to terms with being ill because I've made my decision. An illness I may have, but I also have a LIFE and a determined, fun free spirit. So no matter what, I am living my life to the full.

Even if it does mean getting on a bike again one day... :/

Am excited!

2010-03-27T10:22:00.000-07:00

So I looked on the city council website just to see what kind of jobs were available and the only TA job was part time, 2-3 days a week! haha! So my Mum was wrong. Okay so these sorts of jobs might be rare but it just shows, there is a chance!

I considered applying for it, but it's temporary (June until March) and as I'm going to Peru for 3 weeks in November, I thought it'd be highly unlikely they'd consider me. Plus I did want to take this Summer OFF because I've been studying non stop since school. I bookmarked it anyway, as something to think about. It's just given me hope that I might just be able to get the kind of job I want (part time)!

Decisions, decisions

2010-03-27T08:06:00.001-07:00

I have a lot to think about these next few months. It's an exciting time, the decisions won't be easy to make, but I don't feel stressed or afraid about them... which is a really good thing! Ordinarily I hate change and get very freaked out/anxious. Not this time- least not yet anyway!

For the past 5 years I've worked as a hypnotherapist. It's only ever been part time, because I never generated enough clients to do it full time hours. But, part time is what I've been able to manage. I've enjoyed it immensly. I've helped people and I've managed to earn money, though not enough to move out of my parents and be independent.

My boyfriend would like me to move in with him one day- it's not something that's imminent because we're both being slow and steady about it, which is good (any faster and the change would seem overwhelming and I'd freak out!) but it means I'll have to make a lot of changes. I won't be able to just be a hypnotherapist then- I'll need to earn more money.

Luckily, one of my passions is also working with children and I'm nearing completion of a childcare diploma that would allow me to do that. So one of my ideas was working 3 days a week with children and 2 days as a hypnotherapist. That'd be ideal... but- my Mum, who has worked in education the past 22+ years, pointed out that there's really no jobs for teaching assistants (what I'd like to be) that are just for 3 days. It's either full time, every morning, or every afternoon.

If I was working every afternoon, I could see one client per morning, so that's an option.

However, another thing crossing my mind is for me to stop being a hypnotherapist and focus on full time work. I've never done it; I'd like to try. Full time school hours as a TA I think I could manage, so long as I could go home and rest afterwards (my original plan was full time TA, see clients in the evening and holidays, but since finding out I really DO have a chronic illness and am NOT just 'unfit' or 'tired' I have realised this would be too much for me).

I'd really like to work in a school, I just don't know what my best option would be... whether to go for it full time and give up the hypnotherapy... or whether to try and do both somehow. It's not an easy decision.

I feel almost like if I tried to do both, I might end up doing neither one as well as I could if I was just doing one. However, just doing hypnotherapy is not a viable financial option. So that leaves just doing the TA work. If I did that, I wouldn't have any 'cases' to worry about (there are times when helping other people with their problems can be stressful and that's when I'm JUST doing that, nothing else!), all my free time would be mine to spend however I choose.

It seems like an attractive option... but then I think I might miss the hypnotherapy. But I'm not sure. I've loved doing it these past 5 years and it's built my confidence because I've been able to do something during the time I wasn't well enough to go out and get a 'proper' job. But it can be draining. I don't know if, realistically, I want to do both when it might be detrimental to ME. I want to look after myself. Live my life to the full, but that means allowing time to relax and have fun too. If I try and do everything, I won't have time or energy left for MYSELF and the things I want to do.

So I'm actually considering giving up the hypnotherapy in the future. Even if I'd miss aspects of it. Because sometimes, to gain something, you have to give up something else.

Another thing I'd really like to do is write again. Properly, not just a bit of blogging here and there- but a book. If I worked as a TA to bring in the necessary income towards bills, holidays and fun, I could write in the evenings and/or at weekends and during the holidays. It might never come to anything, but at least then I've tried.

I just don't know if I'm ready to give up something I've enjoyed doing for 5 years, something that's so worthwhile because it helps others and makes me feel good because I've done so.

But if I want to have a balanced life in which I have time for me, to do the things I enjoy doing- like socialising, dancing and holidays, then I might have to.

I don't need to decide yet anyway. It will also depend on what jobs are available. If there's a perfect little part time TA job I could take that and have a go at doing both that and hypnotherapy, see how it goes.* But then equally, if there's a perfect full time job at a good school or nursery, I wouldn't want to miss out on that just for the sake of hanging on to something that it might well be time to let go of...

*The trouble is, when I imagine doing both... I get the feeling that the hypnotherapy would be a hindrance to my spare time that I'd like to have to relax, meditate, and take care of myself by doing things that make me feel good!

For some reason, since the idea occurred to me, I'm leaning more towards letting it go... perhaps I sense that it's time to start focusing on looking after ME instead of looking after others...

I'll just have to put my trust in the universe to guide me the right way. I'll know what to do when the time comes. I trust that, and even though it might not be easy, I trust it'll work out for the best.

Amusing brain foggy moments...

2010-03-25T12:34:00.000-07:00

Because you gotta laugh!

Um... would you be amused if I told you that I had two amusing brain foggy moments to write about but a split second after deciding to do this, one of them went completely out of my mind?? :/

Okay so the first was at school whilst helping during a guided reading task, we got to a page where there was a graph of children's favourite ice creams. I was asking the children with me doing the task what their favourite flavours were, and adding the votes on to the total. In so doing, I somehow managed to add 2 to 7 and come up with 8. When a child questioned me I still thought my calculation correct and, thinking she had misunderstood the graph as she is a bright child, I pointed to the graph and said 'Look it goes 7 at this point, so then add 1 vote for James and then it goes to 8, then add 1 vote for me..." as I realise this does not work out to 8 at all, she says "Yes that's what I mean, 7 + 2 makes 9!" At which point I didn't really know what to say so I just gave her a sideways hug and said "Yes you're right, I obviously can't add up anymore, hahaha!"

Oh, and the second one has come back to me tonight. I was at college last night (oh my goodness NO I meant to say 'the second one has come back to me NOW lol!!!)- anyways. The tutor was asking us what help would be available for mums who've just had their babies. There were only two of us who'd turned up to class and my class-mate was being VERY quiet despite the fact she's had children so knew these answers! So I was having to provide them all and I was doing well but running out of ideas. You know when you're racking your brains thinking and then suddenly it's like a light bulb goes on and you think YES! I got it! ?
Well, that happened to me- so I confidently blurted out "ANTE NATAL!" thinking now why didn't I think of THAT one sooner eh? Go me, I'm really on the ball tonight!

Leaving my tutor to point out that this really would not be much use to someone who's already given birth to their baby.

Oh dear.

In my defence, I had just been to the toilet, so I'll blame the standing up and the peeing for bringing on that. Incidentally, what a good job I'm not a male with POTS because I recently discovered that emptying your bladder makes your blood pressure temporarily lower (oh that's jolly good, mine must be going lower many many times a day then!). At least we ladies are sitting down for that eh!

Brain fog can be amusing at times, but I don't half feel dippy thanks to it! Remember Jade Goody's Big Brother 'Jadeisms'? It's like such things are beginning to take over my life!

I wish I could find that philosophy essay I scored near top marks on about solipsism. I wouldn't be able to understand it now, (I can't even really remember what solipsism IS!) but at least I could read it and think- wow. Once I was very, very clever!

So sleepy

2010-03-25T12:24:00.001-07:00

I had what felt like a manic couple of days at the beginning of the week, with lots of thoughts whirling through my mind and lots of excitement and enthusiasm about DARE. I've mellowed since, due to the fatigue overtaking me- but that's the beauty of a group blog- it doesn't 'die' just because I'm too tired or brain foggy to update things. I hope for it to be a very much alive thing, even when the team aren't blogging. I'm hoping for input from others as much as possible too, whether it's submission of personal stories for the PANS page, or whether its ideas/pictures/articles to be included within the blog (personal credit will be given).

This week, fatigue wise, hasn't been the best but I've managed to push through it. I go in and help my Mum who is a teacher and I find that being with the children boosts me a little bit temporarily, because I forget my pain and I don't feel as tired. I'm more tired afterwards, but it's worth it.

I've noticed myself having a lot of aching and cracking in my joints this week which is giving me a general feeling of malaise. Emotionally, I find myself veering from positivity and determination to feeling pretty darn fed up and wishing I wasn't so damn tired all the time!

Waiting for April 9th also feels like an age... even though it's gotten closer, it's like the closer it is, the longer the wait seems.

Been busy over at DARE

2010-03-22T15:34:00.000-07:00

Hi fellow bloggers and followers.

I've been putting all my time and energy into the group blog project that is DARE. Whilst I will still continue updating here when I can on things of a more personal nature, I might be a little more sporadic here.

In the meantime check out DARE- I'm sooo proud of it and excited about it and so thrilled with the team- I could not be doing it without them, believe me.

Check it out!

Are You Too Nice?

2010-03-20T03:07:00.001-07:00

Are You Too Nice?

Posted using ShareThis

Thinking and blogging.

2010-03-19T12:11:00.000-07:00

I've been thinking a lot today, which spurred some very lengthy blogs over at my new group blog DARE

See, at the moment I'm doing what I can to raise dysautonomia awareness BUT I also have a separate facebook account which I use to talk about that stuff. Some might judge that as hypocritical, but I do have my reasons.

The main reason I chose to have a separate account is so that I can talk in depth about dysautonomia issues and share things with people on that account that I would not want to share with the 200+ people on my main account.

I know and understand my own reasons and stand by them, but I also have a questioning and inquiring mind (when it works right) and I did wonder to myself, isn't that slightly hypocritical- making a blog called DARE with the slogan "Daring to Raise Awareness", when I'm being quiet about dysautonomia amongst those 200 odd passing acquaintances from my school days?

Maybe it is, but it's my choice and I stick by it. The fact is, I just don't believe many people on that account would give a stuff and so I'd be wasting my time letting them see my writings about dysautonomia.

I'm not hiding the fact I have a health condition, it's not a secret, I'm just choosing not to talk about it in a certain arena. Much the same way that someone can be gay but choose not to go to parades and flaunt gay rights.

Another reason for my choice was the fact I'm not officially diagnosed yet. I have all the criteria for POTS including a heart rate increase of usually over 50bpm. But as it's not official, I can't yet say 'I have dysautonomia'. Even though I truly and deeply believe I do. People who HAVE dysautonomia already know how hard it is getting diagnosed so they will understand me and my struggle. Healthy people have looked at me with scorn for believing I have something that's not yet proven, and treated me as if I was crazy and delusional. So again, I choose not to talk about it. I can't MAKE them understand and it wastes my valuable energy trying to.

So, I chose to have another account on facebook where I could join groups and post my blogs about dysautonomia, sharing them amongst people who understand. Because that's what I want at this stage of my journey. To be understood. To be amongst those who understand, to help and support one another. And whether it makes me a hypocrite or not, the only people who truly do understand are the people who have dysautonomia or other chronic illness, and so those are the people who I share these things with.

As for the DARE blog- well, I am hoping that eventually people who don't have dysautonomia might take a look at it and might even enjoy following it. But to be honest, I don't hold much hope of that. Why? I'm not a pessimist- I just believe that people respond to what they can relate to. So, DARE might become popular amongst the dysautonomia community, but I can't really see 'healthy people' following it because I doubt they could relate. But the way I see it is, at least it gives us a voice, a presence. It shows that we are NOT taking this disease lying down. It shows that we are determined and that we will fight.

Biggest Fear...

2010-03-16T02:17:00.000-07:00

This might sound crazy, to some, but my biggest fear at the moment is of going to the tests on 9th April and the specialist telling me that I don't have POTS...

Don't get me wrong. It's not that I WANT a chronic illness. It's just that, as far as how I feel is concerned, I've been living with one for 9 years this Winter and every time I've had tests or tried to get the doctors to believe me that something is wrong, I've been asked if I'm stressed, told that I'm healthy, and made to feel like I've just wasted their time being neurotic.

The cardiologist who diagnosed me with IST told me to try coming off my overactive bladder meds as they can worsen tachycardia. He said they wouldn't be CAUSING it but could be exacerbating it. So then, that made me worry- what if it's the meds causing the +30bpm increase and I don't actually have POTS at all and then there's (once again) NOTHING to explain why I feel the way I do.

Plus the fact that I can still do a majority of things that involve standing up and walking around and even dancing, and I started wondering if I wasn't just being delusional, or overly hopeful that I'd finally found THE ANSWER when really it was just another one of those wrong damn trees I'd gotten a hoarse voice from barking up.

I emailed my new consultant who has diagnosed and treated many POTSies and asked her how long she would recommend I come off the tablets for prior to my test in order for it to be accurate and a true reflection of what my heart rate naturally does. She said two days.

So, today it's two days since I last took a tablet, so I could test myself and make sure I'm not going to be travelling to Newcastle, getting my hopes up that I'm finally going to get a diagnosis, and wasting everyone's time.

I still got POTSy results. So I'm not delusional or barking up any wrong trees. All the tablets seem to do is add to my tachycardia somewhat, so that instead of being 56-64, my resting heart rate is 65-74. Even without the tablets, I am still getting increases above 50+ beats per minute at times.

I'm overanalysing things and charting and tracking them because I feel like I've got to PROVE that I'm not well. But really, my heart rate is speaking for itself along with all my funky symptoms. I might be one of the very lucky ones (and I am counting myself lucky after realising how damned debilitating dysautonomia can be for many) who can still walk around and function generally well, but I still HAVE this and it has still changed my life in a number of detrimental ways. After all, 'normal' people don't suffer with chronic fatigue, headaches and body pain just from being upright!

All I need now is to have it confirmed (oh, the peace of mind I will have then, to finally after 9 years have a diagnosis!) and then I can start the journey of learning to live my life well in spite of it.

April 9th can't come soon enough!

Mother's Day

2010-03-15T04:48:00.000-07:00

I had a lovely Mother's day. I stayed home Saturday night (ordinarily I'd go to my boyfriend's) and though that was very strange and I missed him, it was good to get a good night's sleep. I stayed home for a nice roast dinner with my Mum, then went to see him afterwards. We had a lovely relaxing afternoon lounging around in the sun shining through the window- it was blissful! We listened to music and chatted and talked about plans for future holidays. I came home quite late (for me!) at 10pm, got straight into bed and slept great.

I'm tired and achy and keep getting absolutely AWFUL neck pains, headache and nausea. Other than that, I am doing okay!

I'm doing good!

2010-03-12T04:01:00.000-08:00

I discovered that resting actually makes me feel WORSE. But being too active makes me tired and run down and susceptible to illnesses like colds/sore throats. So I have to find the balance between cycles of activity and cycles of rest.

The past couple of weeks have been a cycle of activity. The previous 2 were a cycle of too much rest- the resting made my BP low and I felt worse.

So, whilst I have been busy, I have: been out two Friday nights in a row. Been to my boyfriend's the Saturday evening after each of these nights, and been a walk each Sunday with him. This past week, Monday I went on a school trip to a castle, which involved climbing up the keep. I managed this fine because at each level, the guide was telling the children things so I could sit and rest. Tuesday I went a short local walk with the school children learning about the old houses in the village. That was less fun because it involved a lot of standing around in the cold while the teacher spoke about the old buildings. I went home to bed afterwards and have been taking it fairly easy since, but I managed to go into college last night and hand in my latest work. I left early but the fact I felt okay to go was a difference in how I'd been feeling the previous few months.

Generally, I'm tired and achy and keep getting bad headaches now- which is a sign I need to recuperate. I'm really glad though that I have got some strength back and am able to be more active.

Having a take it easy weekend this weekend, spending it with my Mum and Grandma instead of my boyfriend due to it being Mother's day. I will miss him BUT I need the rest. I will sleep better at home.

Website

2010-03-10T12:45:00.000-08:00

I've been too busy (and thus too TIRED!) to update this blog lately, but I will get around to it. I'm taking a weekend off visiting my boyfriend this weekend due to it being Mother's Day. I love spending time with him but I'm relieved because I get better rest at home and I NEED THE REST!!

Today I wasn't having the best day physical symptoms wise (had a sleepless night with the feeling deprived of oxygen and getting body shakes/twitches weirdness)but I felt inspired to make a website explaining dysautonomia, as I saw some friends last night I hadn't seen in a while and they were asking me how I was doing, and I'm finding myself getting weary of explaining this thing that is so darn hard to explain! So I figured, those true friends that care and want to know, can be directed here:

http://dysautonomia.weebly.com/index.html

One little thing I will say is my boyfriend was lovely at the weekend. He mentioned the email and how part of it said I need to know that he still cares about me despite all this, and he told me "I do care about you, of course I do"

I managed to be very honest back and said I felt guilty that I'd only found out I have an incurable health condition recently, because it made me feel like I'd made him fall for me when I was going through a healthy phase and now I'm not he has to put up with stuff he could never have known he was getting himself in for, and I worried it would put him off and make him change his mind about me. He said if it was anyone else, maybe it would put him off, but it doesn't make him change his mind about me, which I thought was really rather a special thing to say. It made me feel like he was saying he can see beyond my illness to ME. And that he won't let the illness get in the way of him caring about ME. He then went on to say the shorter length walks are fine and that he just wants to spend lots of time with me, which he said is a big compliment coz in the past he's grown tired of a woman's company and wanted her to leave him be, but with me, he wants to see me MORE.

Then on the actual walk, he made sure I was feeling okay, and when we had to walk up hills, he was patient and understanding when I needed to stop and rest, and told me that at the top of the steepest hill was a bench. :-) After the walk, he told me I'd done well and he was pleased I enjoyed it.

He's not perfect mind you, he wanted me to go to the bar and order food at the pub we visited after the walk, and he rolled his eyes at me when I said no, I want YOU to go because I'm really tired now! (We were sitting down at the time). But hey, I never expected perfection- I'm not perfect either and he accepts my funny moods and my snappy-ness when I'm tired. And how I can be stubborn and sometimes don't say things in the nicest of ways when a raw nerve is touched. So, I feel much better now I've been honest and open. I need to remember that it's hard for others to understand, and that keeping it all bottled up doesn't really do me any favours.

The emotional strain... Follow up

2010-03-05T00:34:00.000-08:00

Thanks Michelle and Em for your support and advice in my last post.

Because I don't see my boyfriend in the week, and because I am bad at explaining things (get emotionaland brain foggy!) I sent him an email- oh yes, I did mention that in the previous post (what was I saying about brain fog? lol).

He replied to it saying he will be more patient with me and is happy with the shorter walks I can manage, as long as we are spending quality time together.

Hopefully from now on he'll understand better now I've explained it all. It was really dumb of me to pretend like I was super-woman and not admit how bad I feel. I have more issues than just POTS- I was afraid he just wouldn't wanna be with a 'sick girl'. But I guess if it turns out he doesn't then it's better I know, and it's better I give him the benefit of the doubt and let him decide with the full facts at his disposal!

For some reason though I feel very drained and sad. Maybe just because it took a lot out of me, daring to finally open up. Added to the fact I am still coming to terms with finding out something HAS been wrong with me these past 8 years (no one believed it) I think in some ways I still have some fear that because I don't LOOK sick or even SEEM it at times, people won't believe me.

I'm counting down to April 9th still- when I'm hoping to find out whether it's POTS or IST or maybe both that's affecting me.

It's been good mostly to get things out in the open- the way my bf would say things like "I hope you get fixed" made me afraid to tell him how bad I felt and admit to my fears that it might NOT get 'fixed' so easily as just seeing a Dr and popping a pill and being better just like that. He said if it doesn't then he'd be disappointed about me not being able to do certain things like longer walks, but "that's life." He assured me he wouldn't leave me and that the only reason he's been 'nagging' me about these walks is because he wants to spend lots of time with me. I guess he couldn't understand why I was able to do them in the summer, and now can't, when I still look and seem (at least at the weekend when I see him and have rested lots in the week in order to have the energy!) as healthy as I did then.

I know someone can't promise you they'll never leave you, and I won't hold him to that, I just wanted to know that he has good intentions- that he intends to stick with me, that he wants to stick with me. I was afraid that if he knew I might not improve, he'd not intend to stick with me at all. But he seems to want to at least for now, so from now on I can be more honest and upfront about it all. If things change then they change, but you never know, now I've been honest and 'let him in' they might just change for the better. Fingers crossed.

The emotional strain...

2010-03-04T01:39:00.000-08:00

It's like everything has blown up suddenly. Perhaps it's my fault for trying to 'be a trooper' and hiding how bad I really feel, but now it's all come to a head. I can't take it anymore. What am I talking about? How my boyfriend just doesn't seem to understand.

He keeps going on about wanting us to do longer walks together. When here I am, pushing myself through 5 miles walks, feeling thankful that I can walk at all, and feeling like death warmed up half the time. (But- pushing myself to an extent does help or I wouldn't do it- I do it for me, not anyone else).

I actually got upset and had a mini emotional breakdown on the last walk we did, because he was going on and on about how he hoped I'd 'get it fixed' and it just sounded like he wouldn't want me around if it turned out that it couldn't be 'fixed'. He was really sorry then and when I admitted to carrying this fear around he assured me he would still want me and he sounded 100% sincere. He then went on to explain that the reason he keeps going on about these walks and things is because he wants to spend his time with me because I'm 'different than the others' and special to him.

Well, that's all very well but I wish he could understand more how it makes me feel- I feel like I'm being a disappointment to him because I can't do those things HE wants. And what about what *I* want?

First I was upset, then I was okay and thought things might improve after I opened up a bit more- but then on the phone last night he brought it up AGAIN- the desire to do longer walks.

I don't think he realises how debilitating this can be. I'm so frustrated that I can't seem to get it through to him, although admittedly I've not entirely tried. So there comes the email.

I sent him a long, detailed email with all my feelings, fears, hopes and details of how this condition makes me feel physically and emotionally.

If he still keeps nagging me after that, I'm going to get very cranky with him. And that's just one more negative feeling that I DON'T need right now.

NB/ when we met, I didn't know I had tachycardia and I pushed myself through an 11 mile walk, and I believe it's that, among other things like social events I pushed myself through, that made me have such a crash in November/December (that I am still not fully recovered from). But because I was fitter when we met, he can't understand now why I am saying no, I can't do that. (because I did it before).

I guess I just need to give him time to understand it and I can't expect him to grasp it right away, especially not when I've been mostly hiding how weak and tired it makes me feel.

Perhaps brutal honesty IS the way forward...

RESULT! Humour with a little dash of cheekiness pays off.

2010-02-23T11:37:00.000-08:00

Ah, it's so refreshing to find out that not ALL companies/people are sticklers to rules, regulations and bureaucracy! (Gah that is the one word I ALWAYS struggle to spell- I can spell diarrhoea [remember I'm English- we have different spellings to the U.S lol] and even onomatopoeia with no trouble, but bureaucracy?! ALWAYS struggle- so thanks spellchecker for sorting THAT one out for me!).

I got my reply from So Natural, and given that they have been so kind as to agree to my request to combine my items into one parcel AND send me the bath salts I requested DESPITE that making THEM out of pocket (due to my postage costs being higher when combined) I think it's only fair and right that I recommend them as a JOLLY GOOD COMPANY. You gotta love a company that not only sell useful products (got friends with dysauto? Why not buy a salt gift set? Pretty, neat and healthy too!) but are kind, decent and helpful people too! So, check the site out
SO Natural Himalayan Crystal Salt Products

Here's the email they sent in reply to the email I sent them yesterday:

Hi Laura

Thank you for your email which we thoroughly enjoyed. We noticed what you had done (ie. placing 2 orders). With the addition of the jar of sole rocks (your 2nd order) this took the postage from £4.99 to £6.99 due to the weight of the parcel, meaning you overpaid by £2.99. However we have enclosed in your parcel the bath salts you requested so that you are not out of pocket. Hope you enjoy your products.

Kind regards

Natalie Gray

So Natural

Tel: 01303 248238

Mob: 07711 667545

www.sonatural.org.uk

~

That really brightened my day did that, and has given me a good feeling! :-) I can't wait for my salty goodness to arrive!

How much might a bit of humour allow one to 'get away' with things...

2010-02-22T07:46:00.000-08:00

I thought this was worth a try... I just ordered some salt products from a company called Himalayan Crystal Salts. After placing my order, I noticed a tantalising offer on a product I hadn't before seen and so decided to get it, but then discovered I'd have to pay for the postage twice. So I thought, well I'll email them and ask if they wouldn't mind grouping my two orders together and sending me a product to make up the cost of overpaying for postage... if they can't all they can do is say no and I'll just have to make sure I'm not so dozy next time!

Hello,

My name is Laura and I suffer with a condition known as "being dozy" which translates sometimes into making unfortunate mistakes. When I make mistakes that cost money, it might seem insignificant but when you add up the cost of these mistakes over the course of a year, I pay a high price for my "being dozy".

I have recently (within this past half an hour) placed TWO orders with you when I could have just placed one, thanks to this "being dozy". I was wondering (hopefully) whether you might be kind enough as to place these two orders into one for me. If this is possible it will mean that I've payed an extra £4.99 for the postage if they were coming to me separately, so I'd like to be cheeky enough (my dear Mum would call it 'assertive) to ask whether you'd mind sending me some delightful bath salts also (product code HCS030 priced at £3.99) so then my misfortune at "being dozy" will only amount to £1 of overpayment and that I can live with and am happy to pay towards your company in the light of your kindness.

The order details of my second order are as follows: 258802378-92-25-113-19. Unfortunately due to this "being dozy" malarky I do not have the first order details.

If this is altogether too presumptuous and cheeky of me to ask, I will take my "being dozy" on the chin and hope that next time I will be more on the ball. And if anyone tells you to take this email with a large pinch of salt, please just ignore them, I'm sure they are only trying to be funny.

Thanks and good wishes,

Laura

Fanspanglydastic!

2010-02-18T13:00:00.000-08:00

There's something about me today. Something akin to "the old Laura" that I miss so much. Maybe it's the CoQ10 giving me some energy- some 'spark' back, I don't know. All I know is the beginning of the week I was tired, miserable and depressed. Now, I'm still tired but I'm feeling chirpy again. I'm planning things that pretty much verge on GIVING my spoons away. But I'm hoping that I'll be okay.

I have this philosophy lately- life is short. So I'm trying to squeeze as much out of it as I can, like juicing an orange. Seeking the zest out of life!

I phoned Lee before and was all animated and cheerful on the phone. I'm usually breathless and falling asleep- not out of boredom by any means, but due to fatigue/dizziness. I actually got a text later from him thanking me for calling and saying how nice it was to chat and laugh.

It makes a DIFFERENCE, having some spark. I want to keep it.

Plus, I even made up a new word in the hopes of cheering up a friend- fanspanglydastic! I used to make up fun and silly words all the time, just off bat, without making any effort. I was funny, witty, sparkly, I had penache. Joie de Vivre. I was 'loopy' Laura. As in wacky, off beat, fun to be around.

I've missed being that way. So, if a supplement is indeed helping me get that back... I'm sold. Heck, I'm in LOVE.

I may be tired, have headache, and feel chronically dehydrated as usual (the feeling of chronic dehydration is my daily life despite drinking approx 4+ litres each day) but I have a little bit of a spark of the 'old me'. Maybe this could be the start of something... maybe it's just a good day. Even if it's 'only' the latter, I'm happy of it. Even if I only ever have glimpses of this, I'm glad of them.

Of course, I want more. But if I don't GET more... I'm glad I had this little spark.

Vastly improved since this morning! :-)

2010-02-17T08:30:00.000-08:00

I couldn't understand why, when I had to go out for an appointment (more on that later) I started feeling BETTER than when I was sitting here in the cosiest room in the house. Then I got back home and saw the bottle of tablets which triggered my memory- I took a CoQ-10. I am now in love with this little pill and am going to source it out in bulk. See, I haven't taken it EVERY day (I read that it can cause insomnia so on days when I've gotten up late- [read: most days this week] I decided not to bother taking it) but today I felt SO bad I thought I'd give it a try, and so took one at around 12pm. By 2.30pm I was feeling much better. I'm still really tired and a bit woozy but nothing like as bad as this morning.

Now all I need to do is get my bladder back to manageable and I'll be... managing. I'm trying this new tablet for it after being advised to see if stopping trospium would help with the tachycardia at all, but so far I'd rather be on the trospium as the new pill ISN'T working and having an overactive bladder is the most frustating and annoying and god, even DEPRESSING thing. I'll go to the toilet, empty my bladder and 10 minutes later I need to go again, 15 minutes after that, once again, ad infinitum.

I'm going to double up the dose tonight (safe to do as they come in 15mg tablets and I'm taking 7.5 at the moment) and see if that helps and if not... I'm sticking with trospium, even if it can worsen tachycardia. Because like the cardiologist said (not that I am listening to him as he was crap but this was the one sensible, supportive thing he said) it's a case of weighing up the pros and cons and deciding what I can live with. I'm okay with tachycardia, heck, until I measured my heart rate I wasn't even aware I HAD it. (I mean, I'd notice my heart thumping when I climbed a hill or when I was stressed about something but I didn't realise it was abnormally fast). I am NOT okay with needing the toilet 2-4 times per hour.

However, I plan to be off the medication for my tilt test so it's as 'true' a test as can be. So I'm dreading the weeks leading up to it, because managing an unmedicated overactive bladder is VERY trying. :/

Now, back to that aforementioned appointment. It was a refreshing change to be in a waiting room surrounded by PEOPLE MY OWN AGE, or YOUNGER. I am so used to being around (much) older people (urology and cardiology) for appointments. It was also highly entertaining, as I was in the family planning clinic and there were a group of very vocal teenage girls all talking about who's done what with who and how so-and-so is a complete slapper etc etc.

My appointment went well and gave me hope as a couple of problems I've been having look like being just temporary hormonal adjustments to my new contraceptive and once that's settled down, all should be well. Relief. I wish all my appointments were as entertaining and uplifting- for once I walked out of a hospital type setting feeling good and happy. I stopped by the chemist on the way out and bought myself some Nytol (which contains the same active ingredient as Benadryl in the U.S). I now feel much more relaxed about getting some sleep on a Saturday night and feel, with the help of the Nytol and the CoQ10, I should be able to make it to these upcoming social events- and be in a better mood during the week too, instead of being so wiped out and cranky.

I'm now going to look up some gluten free cookbooks because I tried re-introducing wheat into my diet yesterday in the form of pancakes and my tummy has NOT been very happy with me about that today. What can I say, I'm a pleasure seeking hedonist with masochistic tendencies.

I don't know how I managed to eat wheat products every day, for so long, without realising my tummy had 'issues' with them. Nothing was diagnosed by a Dr, I had this wacky alternative health test done (I cannot right now remember its name) where I had to hold these mental rods that sent the chemical vibration of a vast array of foods and substances through me and depending on how my body reacted, the results would show what systems of my body were struggling to function correctly. My top food intolerance came out as being wheat flour so I cut it out of my diet (thinking temporarily) and any time I tried to re-introduce it, I'd get awful stomach cramps and IBS type symptoms. I am okay if I eat it in small quantities, such as in soups (wheat flour is added to so many things!) but if I eat anything like bread, pizza or pasta, tummy is not happy.

BRAIN FOG EVENT OF THE DAY

Oh dear. My Mum came in to the room to tell me I've booked 2 tickets TO Newcastle, but only ONE coming BACK. I wasn't 'with it' that day and had asked her to stay in the room with me through the process, but she'd gone out to do some hoovering, thinking I'd be capable of making the second booking myself. Obviously, I was not and was correct in thinking I needed 'babysitting' for this task.

It's incredibly frustrating and quite scary, the magnitude of how dozy I can be... it frightens me because I don't know how I am ever going to cope at being independent. The brain fog makes it so easy to cock up even the simplest of things... :/

Ahhh, so cozy!

2010-02-17T05:05:00.001-08:00

If there's one thing that really makes me miserable, it is being COLD. Unfortunately, I seem to feel the cold much more easily these days. When one of my clients came to see me wearing this adorably soft fleece (it was one of those things that looks so nice you just want to touch it, and so I did- with her permission of course!) It felt so soft and lovely I just HAD to ask her where she got it. She told me the brand name, so I searched it out online and managed to get myself one. It came today and I LOVE it. Not only is it lovely and warm and comfortable, it is also sooooo soft. I love it so much I am thinking of getting one in blue too. I'll take a picture later and put it up so you can see it.

Paying for Yesterday with symptoms today...

2010-02-17T03:48:00.000-08:00

I haven't done any BP or standing tests today because I'm not feeling up to it. I did too much upright stuff yesterday and am paying for it today with chest pain, exhaustedness and a body that aches all over.

I really NEED to do something about Saturday nights. I stay at my boyfriends every Saturday night but I CAN'T SLEEP. It's a combination of factors- I'm so used to sleeping alone (and am a light sleeper anyway and it's always taken me longer than average to fall asleep) that I can't get used to him being there, so every time he moves, it actually makes me jump, which makes my heart race, so then I feel like I'm constantly not relaxed. Also, we tend to share some wine and I don't think this helps because I seem to get resting tachycardia and bad circulation more often than not, so now I'm thinking I'll stop drinking the wine and see if I sleep better. Only not this weekend as we are having guests round for a meal so I'm going to drink a little bit, I think by the time they leave and we go to bed the effects should have worn off- I tend to be okay drinking a little if I'm going to be going to bed a few hours later.

It is however starting to stress me (and potsies know how that's not good!) that I sleep so poorly, if at all, every Saturday because it is taking a huge toll on me during the week. This last particular Saturday I barely slept at all because my tachycardia and circulation were so bad, and I've been exhausted and in a low mood ever since. I also have a lot of social events coming up that I WANT to do- going out for a friend's birthday, going out for the last time with Margit before her surgery, and these are both on Friday nights... I really cannot go out late two Friday nights in a row AND have a sleepless Saturday night- I already feel DREADFUL!

I might even go to the Dr and ask for a sleeping tablet I can just take at the weekend. I believe missing hours and hours of sleep every weekend is adding to the worsening of my symptoms and mood. I need to find a way to get my sleep and still be able to see my boyfriend!!

Anyways, enough of that- I'll talk about what I did yesterday. In the morning it was beautiful and sunny so I went with my parents to visit a local old castle and took pictures. I had to climb a lot of stairs to get to the top, which I think has added to my achyness today. I rested most of the afternoon and then in the evening went to a friends house for a pancake party. That involved a lot of standing up in the kitchen, chatting. I don't feel bad when I stand, which is why it took me SO long to look into POTS when it was suggested to me by a friend I might have it. I just end up feeling bad/suffering for it afterwards, so used to wonder why I'd always seem to get/be so much more tired after things than friends and family.

The party was good fun anyway. I know this is a pretty boring, soulless update but I'm too tired to go into details so I'll just leave it at that now.

An interesting (well, for me) observation...

2010-02-15T11:52:00.000-08:00

The more I have looked into POTS, the more many seemingly unrelated and senseless things in my life MAKE SENSE.

Earlier today, after I did my 10 minute standing test, I really needed a no2. (Sorry if that's TMI for some people!). It occurred to me just now that this always happens when I go shopping. I'd always assumed that for some strange reason, I got 'overly excited' about looking for new clothes (it would never happen in book shops but then I have a reason which I'll get on to) and that triggered off an IBS type response. The number of times I've walked into a shop and started browsing only to think damn, I need to find the toilets now!

Well, since it happened this morning after standing for a while I wonder if it's nothing to do with shopping (or excitement) at ALL but just a bodily reaction to standing in and of itself. I'm not at the moment clever, savvy or 'on the ball' enough to be able to work out why that particular mechanism could be triggered by orthostatic intolerance, but I bet there's a reason it could be.

So, even my needing to poop whilst shopping now (kinda) makes sense!!!

This evening's tests: (done after a meal BECAUSE I was feeling tachycardic)

BP sitting 99/66 Standing 102/75
Heart rate supine: 80
Standing 1 min = 123
Standing 2 mins= 122
Standing 5 mins= 129

EDIT: I forgot that I was supposed to write about my theory on why I don't need to poop when I'm browsing in bookstores. Well, because my very favourite thing to do in a bookstore is crouch down, or even better sit on the floor, while looking through various book choices before deciding on which to get! Therefore, without the orthostatic intolerance, my bowels do not need to move and that means I do not need to 'go' and can also not move but stay where I am, happy with my nose buried in a book.

IT CAME!!!!

2010-02-15T10:33:00.000-08:00

My appointment for my tests (which could well involve the tilt test at last too- they told me on the phone if it's deemed necessary then they do it then and there on the day of your first appointment) came through- Friday 9th April- 7 weeks away and the day before I go on holiday with my parents and Grandma for Easter. So, by that holiday, I could finally have a diagnosis!

I'm pretty excited about it.

Baselines

2010-02-15T03:23:00.000-08:00

I decided to get some heart rate and BP baselines to take to show my specialist when I get the appointment, because symptoms can vary so much from day to day and even hour to hour!

Take this for example. On Friday, I felt my most unsymptomatic EVER whilst standing. It felt NORMAL (and I hadn't realised how 'abnormal' it really feels, since that abnormal has become my normal and who knows how long it has been for).

Supine HR was 74
Standing 1 min = 86 (!!)
Standing 3 mins= 93
Standing 5 mins= 87

BP (sitting) was 98/67 in the morning and 114/76 in the evening.

This morning:

Supine HR was 63
Standing 1 min = 98
Standing 3 mins= 102
Standing 5 mins= 105
Standing 10mins= 126

BP was 82/64 supine, 95/69 sitting and 99/80 standing (after 1 minute).
After the ten minute stand, BP was 103/75.

I'm filling these all in in a little denim notebook that I can take with me. It's also interesting for ME to see how my symptoms vary.

Filled with love- Today's Lovely Daily Motivator :-)

2010-02-13T02:55:00.000-08:00

You are filled with love that you long to express. And yet all too often you hold it inside.

The times when you feel most fully alive are the times when you act based on love. The greatest value you have to give is the value that comes from your love.

Though you may fear that it will make you vulnerable, love actually gives you great strength. Let yourself love, and let your love flow.

Think of the people you love, the values you love, the things you love to do and the places you love to be. All that love will pull you and guide you toward where you truly belong.

Love challenges you to be who you most authentically are. Love enables you and compels you to find and to give the very best that you have.

Love is exceedingly difficult and unspeakably beautiful all at once. Live in love, and you truly live.

-- Ralph Marston

Read more: http://greatday.com/index.html#ixzz0fPbc60Kz

I got my downloads!

2010-02-12T01:24:00.001-08:00

I have to laugh about this- the very kind people at hypnosis downloads have sent me- not just the downloads that I mistakenly deleted in a brain foggy moment but... EVERY SINGLE DOWNLOAD I HAVE DOWNLOADED FROM THEM!

That was 18 emails of 2-4 downloads in each!!!

That's because dozily, I didn't specify which ones I had lost as I wrote my request at the top of my confirmation email with the original link in it, but I don't think that email says which downloads there are, it just links you to them and the link had expired.

How kind and helpful, for the person to search out all the downloads and send me each one! I'm blown away and it has cheered me up on this day I have woken up with the same headache as yesterday and now pain in my eyes, cheeks and nose too (it's all sinus related, I am now in the throes of Lee's bloody cold!).

It just shows there are still many nice, kind and helpful people in the world who are prepared to go out of their way to help someone else.

I can highly recommend them if anyone wants to buy any hypnosis relaxation mp3s- they are great and they have loads to choose from. www.hypnosisdownloads.com. I'm recommending them for great customer service (this isn't the first time I've mucked up and they've helped me out) and great products. :-)

When brain fog stops being a joke...

2010-02-11T14:02:00.000-08:00

Usually I can laugh it off and joke about it, but tonight I'm really pissed off and fed up! I logged on the computer to synch my ipod because a couple of days ago it said it couldn't find two hypnosis files I'd downloaded.

Well. I realise now that I downloaded them on to my memory stick whilst connected to the internet on my laptop, because my PC went through a period of not displaying any webpages for months (it has done it before and usually rectifies itself with time so I was just using my laptop until it did so, rather than paying for a technician to come out like I had to the first time).

So I found my memory stick(s) because of course I couldn't remember WHICH one I put the files on.

But they aren't on either.

The other day, my most used stick was full and I needed to save some college work on to it, so I deleted a load of 'unnecessary' files. I believe, in my supreme numptyness, that I have deleted the hypnosis files. I bought them for myself for meditation purposes and had listened to them a few times on my ipod. However, when I plugged my ipod into the PC, it got re-synched and thus deleted the files (because they are not located on this computer). I didn't know they did that.

So, because I have deleted the original source files and now my ipod doesn't have them, I've lost them!! :( I came online purposely to get them back on my ipod because I felt in need of the relaxation and positive mental boost. Instead, I get all this messing about trying to find the files and this frustration at realising what I have stupidly gone and done.

My only hope now is the people at hypnosis downloads will be kind, since I am an avid customer (I buy scripts regularly for clients as well as having downloaded various mp3s for myself) and re-link me to the downloads, since I found the original order email and tried clicking the link, which had expired. My last resort has been to email them, explaining that I've somehow 'lost' the files, and asking if they could possibly please send me a link to them again. Actually, I'm quite hopeful they will because I once accidentally downloaded some mp3s instead of scripts and they let me download the scripts as well as the mp3s (when I explained my error) which is actually giving me more than what I've paid for, whereas this, this is just giving me back what I have already paid for, and lost.

*sigh*

I STILL have the headache too. It feels like I am finally succumbing to Lee's cold, because all my sinuses hurt too.

Taking my fed-up-numptyness to bed now. Fingers crossed Roger and Mark are understanding and send me that link...

Tired but accomplished

2010-02-11T05:09:00.000-08:00

I got my unit 17 assignment written up yesterday and I managed to make minor adjustments to the assignment 12 that I handed in and had checked. I couldn't really do all that much with that because 1. My brain is refusing to co-operate with me and actually remember any of the policies and procedures I'm supposed to outline and 2.I was so close to the word limit I couldn't say much anyway!

I felt good today but I have this AWFUL headache that's come on gradually more and more. Nurofen time!!! (I always get really tired after I've worked on an assignment lately, so it's good that I've only one left to do!).

I am going to ring up the chemist and see if they have my new bladder meds yet. I'm trying a new one (recommended me by a potsie friend who also has overactive bladder!) because the cardio I saw said my current med could be adding to my tachycardia. I certainly noticed that when I first started taking it, I'd be way dizzier in a morning- but I NEED *something* because my OAB is the worst problem I suffer with and without medication for it, I can't leave the house without making myself dehydrated so that I can be sure not to get caught needing the loo.

I've been questioning future plans in my head a lot lately. Basically, I was considering getting a full time job in September (next school year) but I've decided to put that on hold for a while and concentrate on upping my fitness levels if I can.
I enjoy working the random hours I do and choosing my own hours. It won't earn me enough to move out of my parents but I can always look to getting a job in a school when the time comes to do that, which won't be this year. So THIS year, I can focus on my health, my fitness, learning to cook finally (I can actually cook but never get chance to practice because my Dad is so impatient/controlling and the kitchen is his domain!! And so I forget all the things I learnt how to cook coz I never get to practice them!) and maybe finishing the book I started writing in 2007.

I've always loved writing and can be good at it when I put my mind to it. I used to write novels for pleasure when I was in school. Whether or not I'd actually get one published is a whole different matter, but I won't know if I don't try and I'd regret not trying while I have the chance. So while I'm still here with no financial burdens, I'm going to have a go at doing that once I've finished this diploma in April.

ADDED LATER: They had my tablets so I walked to the chemist, then I had to lie down and have a sleep because I felt EXHAUSTED! I can't get rid of this headache either. It's from writing the assignment, having to sit at the computer typing gives me neck pain that causes tension headaches too- so I've booked a massage for next week, I just need them to ring back tomorrow to confirm it's okay as the people at the health store have to check with the masseur as she only goes in certain days. All being well, she can fit me in Monday. I see her about every 6 weeks, it's a necessity because without it I get the worst headaches and pain. The massage loosens up my muscles so I can function.

Tomorrow I'm only working 1-2 so that will be nice, hopefully I'll feel better. I'd really like to have a go on my stepper if I do!

I'm really keen to get writing again ('proper' stuff, not simply inane blogging) so I can't wait to finish my diploma. I don't have enough spoons to do it before then, but once all that's done with, I will have more time to focus on being creative and finishing the book I started and/or starting something new. I need some ideas!! I keep thinking it'd be good to write a story about someone with dysautonomia, but don't have any concrete ideas as yet as to how to make it interesting. Oh well, after April I have plenty of time to 'play' around with ideas.

My headache is STILL awful and just won't go away!

Life gets eventful...

2010-02-09T08:29:00.000-08:00

My photo book from shutterfly came today- it's so nice that I'm going to make one for the Summer Ball photos and the Rome photos. The Rome photos I haven't organised in a book yet because there were still many more to upload, so while they were doing so, I went to the shops to put some money in the bank and choose a valentines card for Lee. When I got home, I locked the door and came upstairs. GOD knows where I've put the key (I had many brain fog moments today- I'd forgotten to sign my paying in slip for the bank, when I bought my card I took my change and forgot to pick up the card!!!)- I saw from the study window that there was a UPS van parked outside so I went charging back downstairs and the key wasn't hung up so I had to get the guy to come round the side of the house.

How lucky, if I'd been just slightly later home I'd have missed the delivery!!

It was my "air stepper exerciser"- which I've bought for the purpose of improving the muscle tone in my legs, which should improve the blood vessels' constriction and so pump my blood around my body more effectively, which in time could help with the tachycarida... exercising if you can is meant to be good for POTS so that's what I am trying to do! The benefit of it is, I can do it for a few minutes each day in the comfort of home, whilst measuring my heart rate and aiming to keep it reasonable.

I am at the moment fighting off Lee's cold germs :( My throat has started really hurting today, despite me taking vitamin C and goldenseal supplements to try and ward off the virus. It's typical that as soon as I start feeling like some energy is coming back, I go and get a bloody cold!! I also have to go into college tomorrow for a tutorial with Lesley as there are 'a few adjustments' that need to be made to my assignment. Crap, more work!! :( Still, just a few months to go, but I am finding these last months really hard as I've had enough and just want to be done with it!

I plan on writing up assignment 17 tomorrow, then I might be able to take that in and get her to read through that as well, then I can bring both home and work on whatever 'adjustments' are needed, then I only have unit 8 left to do. That will take about a month though as it's one of those bloody portfolios where you have to gather, research and analyse lots of info. Oh I'll just be SO GLAD when I've done it and can have a break!!!!

I had a GREAT weekend this weekend. Me and Lee had the most lovely, relaxed evening of contentment and were both in really happy spirits. We had a lovely walk Sunday too, which I really enjoyed because my shaky, weak feeling has finally gone!!

I also went out Friday night to the pub to meet friends. It was the first time I'd seen them all this year, and the first time they'd seen me since I decided to explain about me having T&T- Tests and Tachycardia. I was touched my how genuinely concerned and interested they were. I managed to dance a little (though got tired very quickly which is unusual for me when it comes to dancing) but the best, most fun part of the night was when we were all sat in the quieter pub, chatting and having a laugh. I'm advertising the next social event, first Friday in March, going to start it in that quiet pub (so I think more people might turn up as it's nice for chatting and relaxing) and then the ones that want to (myself included as I am being optimistic that by then I will be feeling a lot better) are going to go to Flares for some dancing, and possibly the Rewind Disco at Plug (but I will have to feel great if we go there because there aren't many opportunities to sit and rest). I'm really looking forward to it, for one, starting off in a quieter, more civilised pub will make a really nice change compared to how we've gone about things the past few months- and it will mean Lee can come along too (he avoids noisy places due to tinnitus) and for another, after the chatting and mingling and catching up part, me, Margit, Chris, Phil, Peter, Barbara and anyone else who wants to join can go and have a bit of a disco.

I'd got the date of Margit's surgery wrong so this will be our last dance before she has that done. I don't know what's with me lately but I am incapable of putting certain things in my diary correctly- I had a client on the phone with me last week who told me he wanted booking in in 3 weeks time after a certain date, and the place I turned to in my diary was 15 weeks after the date; I don't know how I managed that but I couldn't exactly say to him "I'm sorry you're calling me at a bad time, I'm very tired and suffering with brain fog." THAT doesn't look good for business. So I just laughed it off and he made a joke that he'd have to be hypnotising ME! (Since I didn't just get the 15 weeks thing wrong either, he had to call me back and change the second date I booked him in for, because he'd requested the first Wednesday after he returned from his 3 week holiday, but then when I said the date he said it was someone's birthday, which I interpreted to mean he couldn't make that date and so I suggested the Friday and he agreed, then rang me back and said he wanted Wednesday as he works Fridays... and that he'd been saying it was someone's birthday and that he'd thus *remember* the date, not that he couldn't attend it! So in my foggy state, I managed to confuse HIM too! lol). Honestly, it took like 10 minutes and him having to call me back twice (bad reception and brain fog) and me having to call him back once (bad reception) before we got it sorted!

I hope I can get rid of this sore throat/cold thing because I really don't want to crash again when I'm starting to pick up...

Who

2010-02-03T06:46:00.000-08:00

I've had a nicely calm and strangely contented day today, a day during which I've felt very tired but accepting of it.

I had yesterday what was for me a busy day, and as I still haven't recovered from the 5 mile walk on Sunday (which I enjoyed immensly), I think that's why I am so tired today. I had 3 clients and a trip to the Doctors. My GP was wonderful though, put me at ease, commended me for seeking a second opinion and praised me for being so proactive about my health. I'm now waiting for an appointment with Julia Newton in Newcastle, to be properly tested for POTS.

I'm enjoying the results I'm getting with clients at the moment. I love my job and it fits in well with days like this when I have little energy. I'm a hypnotherapist so I relax people and help them better their lives. They come to me and I sit in my chair in the warm conservatory with the birds flitting about the garden, relaxing them* and giving them words of encouragement and self improvement.
*My clients that is, not the birds.

I had an odd moment today though. I've got this one client who I have a real laugh with, yet I am also jealous of her because, I guess in a way she seems like "the Laura I could have been". She goes running and does all this active stuff like what I used to do. Even though I'm grateful for what I can do, I still miss the things I can't. So I had this odd moment when she was telling me a story about Gok Wan making over this blind lady and the lady saying how is was a "pissing shame" she hadn't met him 10 years ago. I don't know why as she was saying this I got this feeling, but I felt quite tearful- and not because I was inspired by good old Gok or even by my own skill to make other people feel better, but because I was feeling a bit sorry for myself.

It comes and goes at the strangest most random times. I feel it more lately because I have a very fit and active boyfriend and friends. I often feel like an alien amongst them, some small strange floundering thing trying to keep up with the normal pace of life. Then feeling sad when I am reminded in a variety of different ways that I can't.

I have such paradoxical feelings though because even as I am sad about what I don't have and can't do, I'm very thankful for what I do have and can do, and I also have a very strong mind that's determined not to dwell too long on the negative, even if I am aware of it. The fact that I can and do help other people live more fulfilling lives has always been very rewarding and uplifting, but at the moment feels bittersweet. I do for them what I can't do for myself because now it's not my mind but my body that's betrayed me.

I find comfort in the words of Milton Erickson, who said (this isn't verbatim) that it's important to always have something to look forward to, no matter how small that might seem to others.

I always look forward to seeing my boyfriend at the weekend, no matter how tired and/or ill I've been in the week.
I look forward to Big Nights Out because I feel free and happy and can forget.
I ALWAYS look forward to Spring and Summer. To the return of the House Martins and their cheerful twitters in the bright blue sky. To laying on the warm grass, watching white fluffly clouds. Sunshine. Birdsong. Flowers.

It's strange. Finally finding out there is something physical going wrong with me as I'd always thought has made me feel relieved and pleased to have some answers, to know there are REASONS for why I've felt the way I do, but it's also made me feel sad and trapped because I can't be sure if I'll ever be free of it. People who mean well say things like "When you get it sorted" like I'm just some broken down old car that's failed its MOT but with a few new parts and some fuel I'll be good as new. My mental reaction to that is, what if I never am? Will you still want to cruise around the countryside with me then, or will you be wanting to upgrade me for a new, more reliable model?

There's a lot I am coming to terms with. I don't really know what's more scary, being afraid of the unknown or being afraid of what you now know.

The thing is, I feel strong enough to handle this if my friends and loved ones stick by me. But I'm afraid that they may not. Who wants a rusty old clanger of a car when they could have a brand new, top of the range model? Stupid analogy but still, it's a big fear that I have, because I'm new to all this and THEY are new to all this. What if they don't stick around? Then I'll be alone again AND ill.

It's hard not to think What If but I know I shouldn't. I need to cultivate living in the moment. Don't concern myself or waste my energy worrying about scary future scenarios that may not ever happen. So why am I doing that so much lately?

Obviously, under my 'calm and contented' sleepyness, there lies a whole turmoil of confused emotion. Fear, loss, uncertainty, hope...

Yet still, I feel strangely calm...

It's weird. So much has changed in my life. Who am I now? Who am I going to be?

I might not be 'normal' but I am well off...

2010-02-03T01:20:00.000-08:00

I don't want this blog to be ALL about POTS or whatever it is that's 'wrong' with my health. I want it to be about living life and having fun in spite of it.

I admit to having (inappropriate?) guilty feelings at times. Why should anyone feel guilty about being able? But there are times I do, because I'm lucky that there are still a LOT of things I can do, even though my heart rate does go wacky and I do get very tired and achy.

I'm doing less than what I'd be doing without this of course. But I am also doing so much more than I thought it was possible to do when I first read about this illness, which is why it took me 2 years to actually get a watch and check my heart rate, because I thought- it just can't be possible! I can walk 6-11 miles, I can dance all night, I can (hopefully) work full time. So why am I bothering keeping a blog about a chronic illness when, compared to many others, I'm not THAT ill??

It sometimes makes me feel like a fraud. Like maybe I should just do what that cardio said and 'forget about it'. But no. If I could feel better, if I could be helped, if I could do MORE... then I want to.

My main symptoms are fatigue- which I've learnt to live with and push through, overactive bladder, which is helped by medication, and excess thirst- which means I just have to drink water all day long. (I'm such a thirsty type, if I go out of the house for a while without a drink, I feel quite uncomfortable and my lips become really dry. I feel like I am constantly checking places for both water and toilet facilities!).

I guess the reason I am keeping this blog is for my own sanity because, even though I am lucky because I can do enough to live a relatively 'normal' life, I've known for 8 years that things are not quite right, and it's been really difficult mentally and emotionally because no Dr could find out why and no one really seemed to believe me. Even my parents used to sigh and roll their eyes and say things like 'you should try being at work all day, then you'd know what it's like to be tired' if ever I dared to express how tired I felt. And I used to think, I wish I HAD been at work all day and COULD be tired for a REASON, from actually DOING something worthwhile!

So now that I know what could have been 'wrong' all this time (well, even if it's not POTS there is something very definitely, physically wrong because my heart rate is doing wacky things that a 'normal' person's just wouldn't do!!) it's almost a relief... but it's also quite scary because I can't take anything for granted anymore. I mean, I used to take for granted without even thinking about it that my bladder would store adequate amounts of urine so that I wasn't always feeling uncomfortable and like I needed the loo, now it won't and I do feel that way (even with meds), I've had to adapt.

So I guess this blog is about adapting. Even though I know I am lucky and that things could be much worse, and I don't in general feel at all sorry for myself, I still have to adapt. I still have to come to terms with the fact that for 8 years I was right, something WAS wrong, I just wasn't believed and it wasn't discovered.

I guess it's like finally having a voice. I can finally (well, just about anyway) say- I feel like this because of POTS. Or, I'm having a bad day/week/few months because of POTS.

Anyways, I'm going to be firm with myself and stop the silly guilty feelings because that is so pointless and isn't going to do a thing for anyone. I have I.S.T, maybe I also have POTS, and I get very tired, but I know I am lucky because I go out walking, I go on Big Nights Out, I go abroad and I live life to the full.

So, although this blog is primarily at this time about my journey towards finding out for sure whether it is POTS I have or not... it is also going to be about enjoying life.

Well

2010-01-29T13:53:00.000-08:00

After ranting and raging about the damn nerve of the cardio telling me to 'put on weight and forget about it' I have emailed 2 consultants who deal with POTS, inquiring as to whether they could test me for it if I got a referral from my GP.

I'll await to hear from them before I make my next move. One is local, which is a plus, with a 'special interest' in POTS. I'm just wary of seeing people who I haven't heard good reports about now, after the palava that was today. I'd be so pissed off if precious time was wasted yet AGAIN. Though the fact he knows about POTS and syncope suggests that he should be on the ball with it. I'm just wary as to whether 'should be' means WOULD be. Though he was listed on the STARS website so that should I hope count for something.

The other is Prof. Julia Newton, who is listed on the DINET website as well as STARS and who I've heard a couple of good reports about. This would mean going out of my way and travelling much further afield, but it'd be worth it to see someone who knows what they're doing and has a caring nature (apparently, as past patient reports I stumbled across said).

So I don't know yet, depending on the responses I get, and on things like waiting times for referral, I'll hopefully be able to see either Prof N or Dr John West closer to home.

It's just more damn waiting but I keep telling myself, least I'm getting closer...

...

2010-01-29T08:28:00.001-08:00

So, the summary of my appointment is as follows:

1. I have "Inappropriate sinus tachycardia."

2. It's a benign problem

So 3. Don't worry about it and

4. Fatten up, because my 'build' is making me 'feel it' more.

When I showed him info on POTS and asked if he thought it could be that, or if I could be tested for it- he was dismissive and said

5. You could be tested for it, but even if it is that, there's nothing you can do for it anyway.

Conclusion:

Come off my trospium chloride because it can make IST worse. (Which means I will be back to being chained to the bathroom as I will have to pee every 15-20 minutes).

Forget about it.

I feel incredibly frustrated, angry, ignored, dismissed and upset.

The Story of The Dress

2010-01-27T03:00:00.000-08:00

I've just been talking with a friend on facebook about the dress I will be wearing to the school reunion IF* I go.

It reminded me of the great lengths I went to to get this dress. I was telling her about this and as I was writing it, it sounded to me like a made up story, something you'd expect to read perhaps in a chick lit novel, hyperbole for the sake of adding humour, but I swear it is all true.

The villain of the piece is BRAIN FOG.

I suppose it was my own fault for agreeing to go shopping 2 days after New Years Eve. I felt 'better' but 'better' was compared to the previous day during which I was hungover, and all my POTS symptoms and fatigue were exacerbated.**

So my poor brain had obviously not recovered from the depletion of brain cells and oxygen, and quite obviously, carrying a bag with a lovely new dress in it that I didn't have previously was just one extra thing too many for it to have to consider. So naturally, when I put the bag down to try on a coat, it was a case of 'out of hand, out of mind...'

Imagine, 5 minutes later, racing back to the shop as fast as one possibly can with tachycardia, and the panic on top of that of realising that due to your own frustrating stupidity, you've lost The Dress that you fell in love with and were so excited about wearing...
The shop assistants haven't seen it
It's not under the coats you tried on
Maybe it got kicked along under some others
Or maybe... maybe I left it by the gloves when I tried one on to see if it would be nice for Lee! (he always gets cold hands, bless him)
Oh dear, it's not here... but can I be sure I left it here? Shit, I might have left it in that other shop...
The lady says she didn't see me carrying a bag when I walked in, and it's not here... better try that other outdoor pursuits shop... not here, not here... oh god, what if I didn't look properly in the first one?
Another frantic search round, ignoring the 'looks' from other shoppers- getting down close to the ground and sticking your nose into racks of coats... nothing but the empty floor underneath, damn damn damn!
Asking again- in case someone handed it in while you were gone... but no... yet there's hope- check security... but they haven't had anything handed in either- someone must have taken it, your lovely new dress that you've not even had the chance to wear, save in the dressing room where it looked so beautiful and made you feel so good.

Back to the shop to see if they have one left but no... they don't.
Then it's time for the tears, not just mourning the loss of the dress because it's much more than that- it's more much even that mourning the loss of the dreams of wearing that dress and dancing in it, feeling so good... it is mourning the loss of being able to trust yourself, rely on yourself, to do simple things like remember to pick up a carrier bag when you've put it down... they are tears at the fear of not knowing what stupid thing you're going to end up doing next... like forgetting to turn the gas off and leaving heaters on when you've left the house... the quiet, cold dread of a fear that seeps into your psyche, reminding you of your Grandmother with Alzheimers and how she'd do things just like that... reminding you that, if you can't even trust yourself, how the hell can you expect to do anything 'normal', when your brain keeps betraying you?

Then you're so depressed that you think sod the damn money, I want that dress. So it's back home and on to the internet to search for it on the online store and YES, YES they have it! But no, oh no, not in your size...

So you start frantically ringing round other shops and finally track it down somewhere nearby, you get a lift with your very kind Mum (who obviously feels sorry for you despite not being able to understand what it's like to have a sieve for a brain) to the shop and when you get there... there's a fire engine outside and everyone has been evacuated!

So you do a little food shopping at a nearby store and come back. The shop looks like it's about to be closed up! Your Mum shouts under the half down barrier to an assistant, both assistants come to the doorway- she explains about the dress that you'd phoned and reserved to order- hands over the cash and yes, at last- The Dress is finally yours.

This time you clutch the bag tight and don't put it down, not even for a moment.

Because that's all it takes, just one moment, and your brain can be lost and you can be lost and your life, yourself, can be lost.

If you can find it again in the beauty of a black and white dress with black orchids and tiny, glittery sequins on, then you will. You'll wear that dress and remember- it's not easy living with this, any of it- but you do your best and you don't give in and you dance when you can and feel beautiful, because no matter what, no matter how frustrating it gets, life is beautiful.

So you have The Dress and you Never Forget.

*That's a big IF because I have committed myself to a Big Night Out the night before with Margit, she is having surgery on her ankle soon and will be housebound so going out with her now, while we can, is of the most importance socially. I don't know if I can do two nights in a row. The one and only time I tried it, I had to go home because I started feeling like I was about to throw up. Looking back now, this seems like I had a bad Potsy episode, I came close to fainting, I thought I was having a panic attack, I felt hot, dizzy and sick, I got back to my friends uni hall and lay in her bed and felt okay, aside from the residual effects of the dizziness, once I was horizontal.
I also REALLY want to see my boyfriend, now we are in the 'honeymoon phase' (lol) I don't want to skip a weekend that I could be seeing him. If it wasn't for POTS then I'd go out Friday night, Saturday night AND drive over to my boyfriends after the reunion party. But I don't know how I'm going to feel and if I can do that. I HAVE been feeling better lately, but 'better' is not 'normal' and this is so unpredictable so I'm just 'going with the flow' and will just have to see.

** I only recently started getting drunk- I tried it once when I was 17, thought 'oh that was funny, but not again' (I always had emetophobia so that was a big deterrant and I've never made myself THAT drunk) and from then on, would only ever drink a glass or two of wine on holiday, and one or two alcopops when out clubbing- most of my time was spent on the dancefloor, where drinks aren't allowed!
Because of this, I am still learning my limits and it was the second time in the last few months I'd gotten myself drunk enough to really regret it thanks to making everything worse for myself POTS wise. But also, because I missed out on a lot of fun and going out due to other problems, sometimes I disregard the consequences of my actions and decide to just 'suck it up' the next day. And boy oh boy, did I have to!

I'm perfectly sober and yet...

2010-01-22T12:16:00.000-08:00

I just totally misread an advert on facebook as saying: DOMINATE YOUR HAIRDRESSER.

It actually said NOMINATE. hahahaha! I had to do a double take because I thought facebook was turning porny. lmao.

I had a good time tonight. It cheered me up. I came home with a very full belly (a good appetite and an extra stone of weight made a big difference to how much I could eat- I cleared my plate, and there was a LOT on that plate!) and a sense of happiness. A marked improvement to how I left! Margit is great, she's always so exuberant and we have such fun, she always makes me feel good and perks me up no matter how tired and crappy I feel.

It was so funny when the waitress came over and asked if we wanted any sauces. We both asked what sauces they do- well- Margit asked as I was about to- and then the waitress said mayonnaise, salad cream, barbecue... and at the same time we both went, in the same excited fashion- "Oh, BARBECUE! Please" (the way we said it was like 'YAAAY BARBECUE!') it made the waitress laugh as well as us at each other!

Then we ate good food and had good natter. I had a chargrilled chicken wrapped in bacon, filled with mozzarella cheese and bacon bits, with about 10 seasoned potatoes and the YAY barbecue sauce. I've never managed to clear my plate of so much! I like being one stone heavier and having a good appetite!! I just hope I don't get fat :/

I actually feel a lot better physically too, even though moving my body still feels like moving lead through treacle. I think after a good nights sleep I will be feeling much better tomorrow, and I am looking forward to having lunch out for my Grandma's birthday and then going out to Lee's friends house for a meal.

So, even without going to the pub, it's a great weekend!

Big Night Out

2010-01-22T07:21:00.000-08:00

not happening.

I was being optimistic and telling myself I'd be okay for it, but the reality is very different- I pushed myself beyond endurance yesterday while wearing the monitor. I did loads of jobs, went to the shops and walked up the biggest hill in the village. Today, my head hurts, I'm very tired and my tachycardia is on the bad side so I'm sitting as much as possible.

I don't feel that disappointed though. I don't know whether this is some emotional numbness that my body/mind keeps creating to protect me from sad/frustrated feelings, because I do hate saying no to things I'd looked forward to, or whether it's because I felt way, way worse when I actually had depression and didn't have any nights out to go to because I had no friends anywhere near me. Knowing that I have friends who I CAN see at times when I do feel okay is for the most part keeping me feeling kind of okay with this. These friends are members of the walking group (which is also like a big social group) which puts on plenty of social activities throughout the year, so I can 'pace myself' and do what takes my fancy and make sure I intersperse that with quiet, restful times.

And when I am feeling REALLY good, I have friends I can text and arrange Big Nights Out with, to make the most of times when I feel well.

I'm not Pollyanna and if I let myself think too much about it, I do feel damned annoyed that my body is holding me back from saying yes to all the fun things I get invited to; I wanted to 'make up for lost time' and have lots of fun after having gotten over so much crap from my mind holding me back. Now I'm free mentally to have fun and have the people in my life I can have fun with, my body isn't letting me. Yes, that pisses me off. In fact if I think too much about it, I risk sending myself into a demented rage of tears and lamentations.

Which I do sometimes allow myself to have but most of the time I prefer to use the mental skills I honed when overcoming depression and focus on the good things.

It's no good driving myself crazy thinking "if only I didn't have this, I could have done this, that and the other." That's just going to make me feel crap emotionally on top of feeling like crap physically.

So I just think- well, I've got this, I'm dealing with it the best I can, I've got great friends and there will be other nights out, nights out that I am going to go WILD on and make the absolute MOST of.

I could have gone to the pub and spent the night sitting down, chatting; it might have distracted me from feeling crappy- but I don't feel up to even the noise today. I'm in that kind of fragile state where things like that are just 'too much'.

Besides, I have other things to look forward to and that helped make my decision to say NO to the Big Night Out even easier. Tomorrow is my Grandma's birthday, then I'm going to Lee's as usual for the weekend, and we're both invited to another couple's house for tea. I met them on New Years Eve and really enjoyed spending time with them so this is an event that I want to feel 'up' to, and if I went out tonight, even just sitting and chatting, I fear I'd tire myself out too much to enjoy myself Saturday night. So, I had to choose one or the other. And being the kind of person I am, I am GLAD that I can still make that choice- even though I could be negative about it and think 'oh woe is me if I didn't have this I could do both, my other friends could and would do both, boo hoo' I think- I'm just really glad that I can do what I can do, even though I do wish I could do more. It could be worse and I'm grateful that it isn't.

True, I've been forced into thinking this way, because if I don't I'll just be tremendously fucked off and frustrated. But it's like I tell my clients- you can't choose what shit (well, I may not put it quite that way) life gives you, but you CAN choose how you respond to it.

I'm probably writing this as a way to remind myself of that, because I fall prey to that negative thinking of feeling sorry for myself and wishing I could be a healthy person free of limitations. The fact is I'm not, and I have to accept it and work with my limitations as best I can.

I'm still coming to terms with all this. Even though I've not been well for 8 years, I'd convinced myself that there was nothing wrong with me, that I was 'just tired' that I 'just get tired a lot' and that if I exercised more and 'got used to being more active', I'd be okay.

Well, now that I've realised there's a reason for this fatigue, now that I know there IS something wrong... I keep getting these thoughts like- if it wasn't for this, what COULD life have been like? What COULD I have done/be doing? What WOULD it be like to not need to rest so much before and after events just so that I can do them? What would it be like to just be able to do everything I want to do, without having to think about 'spoons'?

But I don't want that thought because it's futile. This IS how I am and I have to deal with it.

I'm not entirely sure if this post is positive or negative... maybe a bit of both. That's kind of how I feel. I'm sad and fed up that I've got to realise I can't do everything I want to do. I'm also scared because I haven't even yet tried to work full time AND do fun things and I don't want to have to say no to fun things all the time because I'm too tired from working... I'm scared because I don't know how to adapt to this, live with it, and make the life changes I'm in the process of making (working, moving in with my boyfriend, being independent...) but I'm also determined, to find my way through (even though I wish I didn't have to) whatever shit I have to.

I'm Miss Lead;

2010-01-21T11:31:00.000-08:00

quiet hope hovers inside Pandora's box.

I WANT TO RIP OFF THIS ELECTRODE!!!

2010-01-20T11:08:00.000-08:00

I have got THE most persistent itch and it's RIGHT underneath one of the electrodes and so I can't scratch it!!! This is driving me nuts and I'm not even trying to sleep yet! I forsee a restless night ahead of me tonight... :/

The nurse who fitted me was actually lovely and advised me to 'get the most' out of my monitor by doing the things that provoke symptoms.

So, I'm already knackered after having walked up numerous flights of stairs (I had to take some books back to college, and I called to see my tutor- the staff room happens to be at the top of 2 flights of stairs, plus my Mum also parked in a multi-story car-park with 20 stairs to get to the level we parked at) and tidying up/hanging up some clothes.

Tomorrow I plan to go to the bank and stand in a queue, and walk up a slight (but lengthy) incline because that's enough to make me 'symptomatic'. Then I am going to the hospital to take this back by bus- because that will involve walking to the bus stop and standing waiting- in the cold- for a bus.

Can't say I am looking forward to tomorrow but I don't ever want to have to wear one of these again and so I am doing anything and everything I can to bring on tachycardia.

Which lets face it actually, with POTS, doesn't take a lot. So okay, anything and everything to show more extreme tachycardia.

I just hope I don't wear myself out for this Big Night Out on Friday... :/

Old blog

2010-01-19T07:54:00.000-08:00

I was looking through my 'old blog' (that I kept 2007-2008) and I can't believe how often I mention

Feeling tired
Dizzy
Drained
Having no energy
Having a 'fluey virus type thing' (since I've found out about POTS I actually believe that these 'fluey virus type things' were simply times when the POTS was acting up worse than usual).

I don't think that was the start of the potsyness though. I've felt that way on and off since 2001 when I got a virus at uni. 2002 was when I started with my awful, horrendous, fuck-this-feels-like-labour-or-gastroenteritis (the latter of which I have experienced, the former thankfully not) pain. 2005 was when I started with Overactive Bladder. 2008 (approx) was when I noticed that I was thirsty all the time.

Look at this entry from said old blog:

Thursday, 14 August 2008

I've really had it.

I don't know WHAT is wrong with me but I know SOMETHING is!!!! And I want to know WHAT!!!!

I am exhausted. I look like shit. I feel drained. Every time I eat I feel queasy. I've lost weight. And lately I am THIRSTY ALL THE TIME !!!

I've already been tested for diabetes so WTF is this?!!!!

Oh and to top it all off I feel like I can't talk to anyone about it coz everytime I do I just feel like I am complaining and no one wants to be friends with someone who is always complaining.

I feel in need of blood tests and check-ups but they nearly always end up making me feel WORSE because they come back fine and the Dr looks at me patronisingly and says "You are healthy Laura." and I could WRING HIS NECK because just because they haven't yet FOUND what is wrong DOES NOT MEAN THAT NOTHING IS!!!!!! I *KNOW* that I SHOULD NOT be feeling this way!!!!!!!! It isn't 'me' and it isn't 'normal' !!!!!!!

Posted by Laura at 4:22 PM

This entry is the best way to sum up why I am hoping to FINALLY get a diagnosis. I don't WANT to have POTS or anything else for that matter, but if I do have it, I want the diagnosis. I want the treatment.

I get hooked up to the Halter Monitor tomorrow.

For the first time ever, I am hoping for a VERY 'potsy' day...

Let us Eat Chocolate, for we have brain fog and therefore NEED it MEDICALLY.

2010-01-18T11:47:00.000-08:00

After a week of pigging out on chocolate (that was likely thanks to my hormones doing their pre-menstrual samba) I decided to EAT HEALTHIER.

I do eat generally healthy but I am a big lover of snacks and the snacks I choose aren't usually the healthiest, unless you count Chilli Heatwave Doritos and copious Bendicks Bittermints amongst the recommended "5-a-day."

I'm doing well so far, I had a lovely salad yesterday and a shape yoghurt today. I absolutely DID NOT eat a double chocolate chip muffin for breakfast the day after I decided to EAT HEALTHIER, nor did I eat 8 Asda Chocolate Chip Cookies in a row last night.

I did plan on this EATING HEALTHIER malarky before I a) knew my Mum had bought me Asda Chocolate Chip Cookies (my favourites!) and b) found a packet of chocolate Hobnobs at the top of the cupboard.

In my defence, I read in a magazine today that chocolate actually helps increase blood flow to the brain.

Happily, this is something the brain fog did not steal from my short term memory. I will reiterate: CHOCOLATE HELPS INCREASE BLOOD FLOW TO THE BRAIN.

Made that '3 Hobnobs or 1 apple?' decision much, much easier. I went for the Hobnobs. I don't need to 'keep the Dr away' as actually, I'm looking for a good Dr the way most women search for the elusive 'Mr Right'. I do however need increased blood flow to my brain. Maybe, from now on, I'll remember how to use the remote control and not leave shopping bags unattended that are then stolen (I'm still mad about that- some mystery person will be wearing MY NEW CLOTHES that I never got to wear- I'm still convinced it was the man behind the counter in the sports shop- he had a shifty look about him when I was asking him if he'd seen a Pilot bag on the floor. At the time I suspected that he'd taken the clothes for his girlfriend but he was about my size, so perhaps the shifty look was due to him thinking "Oh god, I hope she can't see through my manly sports work attire and guess that I'm not only a thief who prays on innocent women with brain fog who put down their shopping bag and forget to pick it up, but that I'm also a TRANSVESTITE).

I'll be watching out for him at "Los Travestitos" next time I go on holiday. Wearing MY dress. And then I shall say "A-HA! I knew it! I may have brain fog but I'm also trained in body language and I KNEW you looked shifty that day! Now, give me back my dress!"

DISCLAIMER: #1 I am not responsible for the sugar rush and delusional outpourings that [too much- forgive me chocolate for I have sinned in saying that] chocolate induces in me.

#2 No transvestites were hurt in the making of this blog.

Lovely friends.

2010-01-18T09:18:00.000-08:00

I recently told my best friends about the fact I was being tested for POTS. I wanted them to know because I've been struggling since the end of November with low energy. I think it was a case of doing too much partying before I was aware of what it was doing to me. Now I am trying to be sensible and pace myself.

I got lovely, wonderful responses from them though, which I thought I would share.

#1

sorry to hear that! I really hope it can be treated and you will be ok.
Please don't worry, I bet all of your friends, incl me, will understand and want you to be ok! Take things slow, and you can be sure there will be enough parties etc, so there will be quite a few when you will feel fit enough to make the most of it!
Take care of yourself and don't worry about anyone being upset!

Happy New Year to you!

#2

Sorry to hear that, thought it was weird that you left early from parties but never realised why. However, its not a problem, I am impressed at how open you are about it. Just don't push yourself, take your time, get yourself sorted and you'll be raring to go again. At least your getting sorted, thats the most important part.

Any hoo,

Have a fantastic New Year and see you in 2010.

#3

Hey Chick x

Happy New Year!!!! and i'm so sorry to hear your news, fingers crossed for some magic medicine so you can be on top form again!! I'm sure you can still dance us all under the table either way!!

Much love to you, hopefully see you at the Dev on Tues.

#4

Rest assured, you've still got more energy and go to more parties than most people anyway! Hope you get the right treatment soon so we can do even more partying this year :-)
See you soon, Peter

(This he said because, since joining the walking group in March, I've been to almost all the social events, LOL. I've made fantastic friends and met my boyfriend there- without these people and this group, I'd have been truly miserable! They all make living with this much, much easier than it would be if I didn't have such great people in my life!)

"This is the man I dance with very sexy, very close, body to body."

2010-01-18T08:20:00.000-08:00

I just wanted to say, I had a great weekend. I felt positively dreadful on Friday but by way of some miracle, Saturday evening I felt relatively normal (for me).

I did have a dreadful night once I tried to sleep mind you, not sure what caused it, I think possibly eating so late- I just couldn't digest the food and my tachycardia felt awful even laying down. So I was awake until FIVE. Then I got stupidly over emotional in the morning after a meager 2 hours of 'sleep' and shed a few quiet tears a couple of times, but that was mostly the combination of fatigue and hormones. Generally, I'm not all 'woe is me'. I was just so frustrated that I'd not slept AGAIN.

I started a period Saturday which explains why my week was so awful. It was a relief to be honest, I thought the worsening of my fatigue, dizziness and tachycardia might have been due to walking up a slight hill in the snow with my boyfriend- a walk which I very much enjoyed. I consider myself so lucky that I can still do 'normal' things like walking and dancing, even though I do 'pay' for them with excess fatigue for days afterwards. However, being so tired and low in mood didn't feel like me. And it wasn't. It was me with hormones, which is never really 'me'. I'm sure other ladies who suffer PMS even without POTS can understand what I'm saying here.

So, Saturday night I went out for a meal for a good friend's birthday. I was absolutely blown away by the generosity of this friend, who payed for EVERYONE'S meal. There were between 40-50 people there!

I took my boyfriend out with me for the first time amongst my good friends. (We've been together 6 months and during those 6 months he was working on a dissertation for uni and wasn't socialising with anyone but me- even his best friends only saw him a few times in those months). We didn't get to all sit together for that long because the host arranged this thing where we all had a designated seat with people we didn't know- he's very much a 'social butterfly' and I guess wanted everyone to 'mingle' and not just be stuck with the same people. It worked to a point but I'd have preferred to have stayed for the majority of time with my friends and boyfriend- so I think perhaps it would have been better had we just done the exchange of seats for pudding, rather than for the main course right until the end.

My best friend made me laugh so much as usual. I only met her last year but we've become close very quickly because we are so alike- she's very outgoing and full of energy- which I am too when I'm out, believe it or not. Sometimes, I really can't believe I have this condition (it's not diagnosed yet but I'm almost certain after my poor man's tilt tests) when I can be so energetic; even though there are often times when I feel worn out from these times I push myself, I am very grateful I CAN push myself, there's plenty who can't and I don't think I'd have their strength, bravery and compassion if I couldn't.

Anyways, I digress. Margit made me laugh so much because she's so bubbly and outspoken, that mixed with her accent always creates hilarity. When she introduced her boyfriend to Chris (another good friend who is often out with us when we go partying) she said "This is the man I dance with very sexy, very close, body to body." Her boyfriend responded with a kind of grumpy demeanor and she said: "What am I to do, you don't give it to me so I have to find it elsewhere!"

She also said to him- regarding me: "Oh, I love her! She is the best! She's better than you."

I think we'd have had a FANTASTIC night had we not all been split up, as Lee (my boyfriend) was very funny and making Margit howl with laughter, Phil is also very funny, and I was getting to know Margit's boyfriend who is very shy and the total opposite to her in character.

Still, it was a great night and I wasn't jealous at all when my boyfriend was chatting away so much to the woman he got sat with and didn't even seem to get bored or wish he was sitting with me. Although I did wish he'd looked round at least ONCE to see how I was doing with my random 'friends'...

I admit to being relieved when he told me the lady he'd enjoyed talking to so much was married. I'm not a jealous type, but something I do worry about is the fact that when we met, I was doing good and now I'm not doing as good, and I know he wants to take me on longer, harder walks and the fact that I want to but CAN'T isn't easy. So when he started telling me "The woman I was talking to lives on my ROAD, can you believe that? And she likes walking and running!" it made me feel a sudden jolt of fear. Not because I feel like he doesn't care about me, because he makes me feel very loved- but because I worry that he could one day end up wanting to be with someone fitter and healthier. Someone who can get up in the morning. Someone who can get up without having to be wrapped in a blanket shivering and drinking 2 pints of water before starting to feel capable of speech. Someone who can play scrabble without getting brain fog... and the list goes on.

Even though it's a young relationship, I do feel as though he loves me enough to want to stay with me despite my limitations. I'm just a natural worrier at times and anything my mind can find to worry about when it comes to 'matters of the heart', it inevitably will.

However, hows this for "Perfect POTS Partner"? When I got to his house, he had a pint of water waiting on the table for me, which I appreciated VERY much, because as well as always feeling thirsty, I have an overactive bladder to contend with, which means that when I drive over to see him, I stop drinking for a while before I set off so that I can be sure not to be caught out needing the loo if I were to get stuck in any traffic. This means that by the time I get to his house, I am ALWAYS extremely thirsty.

He also bought me over a glass of water when we were at the restaurant as he thought I'd be feeling thirsty. Most boyfriends were buying their girlfriends wine, mine brings me iced water. It must be love and the "PPP."

I do so wish though that I could get used to sleeping next to him and not have surges of tachycardia every time he rolls over in bed! Yes, that truly happens. I think that subconsciously as I'm drifting close to sleep I must think that I'm on my own as I usually am, then he'll turn and I'll get a fright at the noise and sudden movement!

Thankfully in my own bed I am sleeping well again now my hormones are settling down or whatever it is they do when they've stopped making me pre-menstrual. I need plenty of rest this week because I'm going on a Big Night Out on Friday night. This shall involve some of my most favourite activity, dancing. Incidentally, when a friend first told me she thought I might have POTS like she does, I poo-pooed it because I thought- that can't be me when I can dance for hours! But I am learning that there are no 'norms' with POTS and that just because I am lucky enough to be able to stay on my feet and dance the night away, doesn't mean that I don't have POTS... I've seen what my heart rate does when I'm doing 'normal' things and I see that that's not normal! God knows what it does when I'm dancing, personally I'd rather not know. I enjoy it, I love it and I feel very blessed that even with this, I can still do it.

And do it I shall, come Friday. Let the 'spoon gathering' begin!

How can it be that...

2010-01-14T07:57:00.000-08:00

today my HR is 112 just leaning forward to get a drink from the table (whilst watching the recording of Slumdog Millionaire- yes, I actually recorded it right despite yesterday's tremendous brain fog) and 150 going slowly upstairs (I'm self monitoring again in the run up to my Halter test to see what, if anything, helps and what, if anything, makes it worse) and yet I feel much, much better?

I think it definitely helped that I slept better. I took a piriton- they tend to make me sleep well, I'd just forgotten that I had this option- til I was reminded when asking for advice on the DINET forum. I still do feel VERY tired, but compared to feeling VERY EXHAUSTED, very tired feels positively energised! ;)

I also took things very slowly this morning- despite numerous interruptions!
These were:

The doorbell going at 9.30am (I was still in bed, dozing). The post-people just DO NOT allow enough time for people answering the door! I mean yes, I know I am slower than 'ordinary' people and as they'd gotten me first thing whilst still in bed there was no way I was jumping up and rushing to the door (hello dizziness!) but still, you think they'd wait a few minutes at least! By the time I made it downstairs they'd given the parcel to my next door neighbour.

The doorbell going when I was on the phone talking the my Grandma. It was Interflora with a bunch of flowers for my Mum from a couple who's purse she found (with £500 in it!) in the villa we stayed in at Christmas. They'd left it there in AUGUST and no one had found it, despite them asking the cleaners to check!!! Obviously, the flowers were to say thank you to my Mum for being a decent, honest type and returning it.

After ringing my Grandma again to tell her about the flowers the doorbell went AGAIN- this time it was my neighbour bringing the parcel.

I had my dinner at 1pm (cuppa soup) and then I braved the great (icy) outdoors to fetch some provisions- Lucozade, pretzels, sea salted cashews with black pepper (sound yummy!), twiglets and piriton. The former are for days like yesterday during which I felt like I could NOT get hydrated no matter how much I drank. The lucozade can also give much needed energy.

The piritons, I am going to take for 10 consecutive evenings to see if they help me out of this slump of low energy. After that I'll see how I feel. I might take them for a couple of weeks to ensure good quality sleep for a while and then stop and just take them on Saturday nights when I stay at my boyfriend's (I never sleep well when I sleep away from home, unless I take piriton!).

I feel that much better from ONE good night's sleep that I'm hopeful within a couple of weeks- even despite weekend social events- I should start to feel a bit more 'normal'.

I also rang college to renew my library books and was told there's no class tonight... so I passed the message on to my college buddies- but T. messaged me on facebook saying she rang the tutor to check and it is on...

I haven't been on facebook.

Seriously though, I wouldn't be going in anyway. Yes, today is a much better day, but I haven't got the energy or the concentration for college class. The good news is, I'm ahead with my work because whilst I was snowed in last week, I managed to write up two assignments. This could have contributed to me being so tired this week mind (it seems like every time I spend a lot of time on college work I have a big dip in my energy and my symptoms worsen) but it takes the pressure and stress off so I'm glad I did it.

Things are looking up! :-)

My Dad can be SO horrible!

2010-01-13T12:11:00.000-08:00

I've had an awful potsy day today. Bad dizziness, exhaustion and TERRIBLE brain fog. The latter is SO frustrating for me; before all this I was a straight A student who got a degree and could remember anything and everything and spout off all kinds of knowledge. Lately, I am forgetting what I am saying in the middle of sentences, walking into a room and forgetting why I'm there, forgetting how to do simple things... the list would go on, if I could remember it!

So this evening I wanted to set the dvd to record something. I haven't done this for a couple of years and so naturally, I couldn't remember what to do. What was worse though was I couldn't even remember the basic things like what button made the TV switch from TV screen to DVD. I KNEW there WAS a button, but I was just sitting starring at the remote for ages feeling this frustration welling up inside of me because I couldn't remember or find the button. I tried pressing a few but they were wrong. What was making it worse was my Dad was in the room waiting for me to do it whilst watching some police camera action type show, so there were these flashing lights and sirens really bothering me, plus my Dad is SUPER critical, so he starts on with the criticisms, telling me how I'm pointing the remote wrong and I should do this not that, blah blah blah... then he starts shouting at me because he was 'trying to watch the bloody telly' and I ask him to please NOT shout at me. But not only does he not bother to listen, he stands up shouting over me and ends his tirade with the accusation 'you've been a fart all day!'

Well gee, I know THAT already. But I'd rather be a fart than an incompassionate ranting moron.

He went off having a tantrum, slamming doors and finally left me to it.

Once he was gone, I managed to figure out how to set the dvd- albeit slowly with a couple more 'trial and error' mistakes.

In the past, an outburst like that would have upset me but currently all I feel is- fine, whatever. Have a stupid tantrum and shout at me, that's just great. I feel that shitty as it is, it doesn't even impact on me. Maybe coz I've learned not to care what he thinks or how he treats me, as this isn't anything new.

*shrug*

Mourning who I could have been... celebrating who I AM

2010-01-13T09:57:00.000-08:00

Written on December 17th originally. Reposted here.

It seems strange. I know I’ve been ‘not right’ health wise for years, but it’s like it’s finally hit me. I’d learnt to live with it and pretend everything was fine but this year has made me realise, it’s not fine. I can’t push myself and act like I am ‘normal’ when I’m not.
So I’m sad, for the loss of that person who I could have been. If I hadn’t gotten ‘this’. I could have gone out dancing two nights in a row. I could have walked further, maybe even still gone running. I wouldn’t have had pain, depression, anxiety. My ambition wouldn’t have died along with many brain cells, I’d have stayed bright, sharp and clever and gone on to do great things and make a living for myself instead of being dependent on others.
I’m sad, upset and sorry that I didn’t get to be that person.
Now at least, I am aware of my limitations and can begin to mould my life by working around them.
I’m still not sure who to tell and how many to tell. I know I don’t have the diagnosis yet but I don’t feel I need it right now to know, I’ve got dysautonomia. My body is telling me in the pain in my chest, muscles and joints, my pounding heart every time I try to do normal things other than sitting, my exhaustion, my constant thirst, the headaches and the ‘overactive bladder’.
I feel I need the support of my friends but I am afraid also of them treating me differently. I don’t want them to. I want them to know so that they understand why sometimes I might not be able to go out even if I really want to, or why I can’t do the longer or steeper walks. But I don’t want them to ask me if I’m okay all the time or remind me constantly of my limitations by treating me differently.
I am just going to tell my closest friends, those I associate with most, just not sure when.
I know they’ll support me and be kind and good. I suppose once I tell them I can just ask them to treat me as normal, and that I’ll tell them if I need/want ‘help’ in any way.
I feel very sad and emotional today. I think all the stress of the past few weeks with these appointments and tests and keeping it mostly to myself and then finally being heard and getting the referral has taken its toll, on top of already feeling like cack. Now that I ‘know’ finally, what is wrong… I have to face up to it and it’s not easy, even though in many ways it’s a relief to make sense of things.
It’s so hard to get used to these limitations. See, I know I both want and need a shower, but I don’t feel I have enough energy to stand in there and wash my hair, then dry it after… but I also know that I feel dreadful in the mornings and need to walk to the Drs, so I’m probably better off doing it tonight and then going to bed, and saving doing less tomorrow morning if I can. I really am having to take care of my spoons more lately. (http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf) They seem more few and precious.
But, rather than being sad about the person I’ve lost, didn’t get to be… I am going to make the most of the person I AM. It’s not what life hands us that makes life good or bad, it’s how we deal with it. So I am going to deal with this as positively as I can, being thankful for the many wonderful things I DO have, and the many great people who I am blessed with knowing who make it easier for me when I’m sad, or tired, or just plain fed up; as well as making life fun and enjoyable and bringing me shared happy times!
I’m also going to make sure that I take better care of myself, and my body. No more pushing too hard, trying to be ‘normal’. No more wasting energy on people or things that aren’t worth it. I will fill my life with love and light only, and keep out as much negativity as I can.
You know, pain really is a great teacher. Pain of any kind, physical or emotional. It forces you to realise how many blessings you really do have, when you take the time to notice them. Even when times are tough, when you wonder ‘why me?’ and wish the pains away. You realise in some ways, you’re lucky. You’ve been ‘awakened’. You don’t take things for granted anymore.
I do acknowledge that it’s not always like that. I was sitting on my bedroom floor an hour before, crying with exhaustion and frustration. Would I rather be completely healthy and ‘unawakened’, taking it all for granted? Maybe. But I’m not, so I choose to make the best of this however I can, and if that means being Polly-freakin’-anna, then so be it! If it also means being a misery-guts at times and getting all ‘woe-is-me!’ then so be that too!! I’ll do whatever I can to get by. I just know that I feel better when I force myself (because yes, sometimes I have to FORCE it!) to look on the bright side and find the positives.
I find something really magical in the human spirit that I really love. When I get low, when things get hard and I feel sad, I look out into the world and I see a lot of love out there. It makes me feel better. There are so many good, kind, thoughtful people out there. So much beauty too. The world really is a special place. Being ‘this way’ has made me more compassionate and caring, that’s for sure. There’s a lot of love to have and to give, if you look at the world in the right way. I’m glad I can, and that I do. Because when things get bad and sad, there’s always that little glimmer, that spark, that makes it better again.
And hey, it’s gotten me writing from the heart again too, which feels good and healing.
So, thank you for this life, even with its hardships and limitations. I truly am grateful to be here, experiencing this wonderful world. Thank you, thank you, thank you.

Here begins a new journey...

2009-12-15T11:13:00.000-08:00

I've started a new blog, because I'm all for new beginnings and fresh starts and all, but really of course nothing is ever a true beginning but a continuation of things. So a vast many things have led to this 'new beginning' of which I may detail at some point, but for now, I just want to stick right with the facts and not go meandering about into the topic of the past.

In my life right now, I am the happiest I have been in years. I have wonderful friends, lots of fun, happy times and a lovely boyfriend.

The purpose of this blog though is not really to talk about my life in general, I am a fairly private person so am not keen for that to be on display all over the web (not that blogger is 'all over' the web or anything, but anyone can access it and my mind is prone to paranoia at times...) . However, what I am finding myself wanting to write about is stuff that I either don't talk about with people because it's not really everyday conversation or stuff people really want to hear... OR I talk too much about because I may be on the verge of an epiphany that makes sense of the past 8 years of nonsense...

Now, at this point I feel I am rambling and I also feel I do need to delve into the past just a little.

8 years ago, I started university, picked up a virus and my life changed a lot. I'd always been happy, fit and active. I became unhappy, unfit and inactive. Various new symptoms cropped up and the list grew ever more... varied. I'm not about to go into this list just as yet.

Frustrated with my health, I joined a few forums where I talked about it with sufferers of chronic illness- and it was on such a forum that someone mentioned to me that my symptoms may be down to POTS aka 'postural orthostatic tachycardia syndrome'.

Now, initially when I read the description she linked me to- I dismissed it. I didn't think it could relate to me because I'd never had any problem with standing, never fainted or anything like that.

For some reason, maybe guidance from above who knows, recently I decided to re-read the site and look into it PROPERLY. And lo and behold, when I looked past the initial orthostatic intolerance type symptoms, I discovered a whole host of symptoms of which I DO have... and I felt like I was already having an epiphany. Like this syndrome could explain so many of the seemingly unrelated things I've 'suffered' with on and off (or on continuously, depending on the symptom) for the past 8 years...

So now I have begun a journey. It began by monitering by BP and HR with a BP monitor. Then visiting the Dr to tell her my HR was elevated and I'd been feeling breathless and shaky. Then having blood tests and an ECG. Then getting a continuous HR monitor with chest strap and watch and doing a week of 'poor man's tilt table tests' and fretting and wondering and waiting...

My HR has often increased by 30 or more beats per minute from supine to standing. I'd say 9 times out of 10. It doesn't tend to stay very highly elevated, hovers around 100-112 most of the time, but a few times it's stayed above 120. I think I have enough 'evidence' to warrant a clinical tilt table test anyways. Whether or not it will conclusively show POTS or not, I'm yet to discover...

I am to visit the Dr in the morning for blood test results and shall be bringing up my heart rate discoveries and politely requesting a referral to someone who can do me a tilt table test, while my heart probably goes into tachycardia just sitting there hoping for the outcome I desire...

It's the beginning of a journey. Of waiting. Of patience. Of hope. Of determination.