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, 28 June 2010

A very sweet thing

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!

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!).


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...

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?

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...

Friday, 25 June 2010

Reminder of the recent past...

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.

Monday, 21 June 2010


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


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.

Thursday, 17 June 2010


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.

Tuesday, 15 June 2010

Brain Fog Disappointment post 2

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.

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.


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. :(

Monday, 14 June 2010

10 Random Facts

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

Thursday, 10 June 2010

Change of mind...

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.

Tuesday, 1 June 2010

Brain Fog Escapades.

(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!

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...