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

Tuesday, 18 May 2010

New Mood New 'tude

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.

1 comment:

  1. YAY for you and your new tude. Must be something in the water as I also made the decision a few weeks back to find that glass half full, hence the Fabulous Fridays. It's really easy to be overwhelmed with the whole illness thing and somedays you have to grab back a bit of life and say Bob be damned, I spit in your crappy dizzy face! Ha Ha! (Watched Men in Tights the other day, may have influenced me just a little).

    Okay that all sounded rather manic sorry about that but still big YAY for you. :)