Tuesday, 3 June 2008

Mothers little helper.

My Marvel-crazed youngest son just asked me: "Which power would you rather have - the power to turn into water or the power to turn into fire?" After a little thought I plumped for fire. Yeah, burst into flames and burn the place up. "Wrong!" he said, "If you are fire, someone could put you out with water. But if you're water nothing can hurt you and you could go into the sea, mix with all the other water and get bigger and bigger." Mmmm, wise words.

Without any power at all, I went off to school today. Well, only the power given by one 5mg tab of prednisolone. What I actually need at the moment is the power to stop taking it. I started this course at the end of March at 30mg's a day for 2 weeks, then 20mgs and so on. But when I got down to 5mgs it all flared up again. So, I went back up to 10mgs and stayed on that until this week. So I need to stop again, but if I do and then it flares up again... well, then I have to start facing up to having to manage things another way, namely Azathioprine. Maybe this is not a big deal, I can't decide. All I know is that I've been fighting without drugs for 3 years and I really thought I had it all under control. And then, through the dumbest luck, it all kicks off and here I am.

How much of all this is real anyway? Every morning I place my faith in that little white pill. But am I OK because my brain excepts the power of the pill and everything wallows in its calm? Whats 5 mg anyway? Is that really enough to do anything? Will I be responsible for causing a renewed flare-up because I keep stressing about finishing the preds? Why do I have to constantly think about this? Jesus, I've spoken to enough other sufferers and read enough other blogs to appreciate how bad things could get for me, but sometimes I think I spend 90% of my daily brainactivity thinking about this bloody disease. Even when its not doing anything its affecting my life.

Today was uneventful. Two visits to the bog at school, neither loose. One since I got home, little nuggets! Feeling bloated and farty still. But thats good enough for me.

Soothed by the sounds of Sparklehorse.

2 comments:

Charlotte said...

It is so good to hear someone else asking the same questions and going through the same 'is this real' thing.

It's been ten years for me and I still question every symptom. I wonder if it is ever possible to come to terms with chronic illness?

I haven't the energy to comment again but I LOVE the Bristol chart! Where on earth did you find that? I have never seen it before. Made me smile :-)

http://lottie30.wordpress.com/

Rich said...

Hi Charlotte
You're so right - I often find myself wondering exactly how much my continuous worry about every symptom actually makes them worse, which makes me worry more etc etc. A continuous downward spiral.

My wife's a nurse, twas she who found the bristol chart - I love quoting from it in front of doctors!

Take care, rich