I thought it was the dish that ran away with the spoons?

Well, in the nursery rhyme it is but for me it's POTS!

Click this for an explanation of POTS

And this for an explanation of SPOONS

Monday, 20 September 2010

New blog.

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.

Sunday, 19 September 2010

My computer is being about as dysfunctional as my body!

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!

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!


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.

Tuesday, 7 September 2010

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

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!

Monday, 6 September 2010



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...


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.

Wednesday, 1 September 2010

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

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.


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.

Thursday, 26 August 2010

New Beginnings

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.