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

Wednesday, 3 February 2010

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

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.


  1. It's weird that we beat ourselves up about being sick in so many different ways. There is always someone worse off, but that doesn't negate what you are going through. Yes you are lucky in some ways, but can you truly say being ill in any way is lucky? Your sick, your emotions the way you think about it are totally legitimate and completely normal. Sometimes you need to howl at the moon, sometimes you need chocolate and sometimes you need to work through it and go 'meh'. Whatever works to help you cope is the right thing. We beat ourselves up much more than anyone else could. Hang in there:)

  2. Thank you! You are right and I appreciate your wise words and support. :-)