It's later that I'd like

Sometimes I want a good night's sleep. That might be really obvious to a lot of people but for me it's different. My whole body twitches sometimes all night and on nights like tonight I just can't sleep because of it. Tonight I'm really tired and I could do with drifting off into lala land for eight hours but my CIDP says no.

I'm pretty used to this by now and I've learned to catnap during the day when I need to, and I do try to do as much as possible to wear myself out everyday so by the time midnight comes around I'm so tired nothing would keep me awake. The thing about tonight is that I spent the evening playing music in a local pub and now I'm buzzing from it. Most musicians will tell you the same thing, it's hard to switch off after a show and winding down is always a problem, so combine that with twitching nerves and muscle cramps then I don't really stand a chance.

Lately I've been doing pretty well. My walking is getting better in the middle of the month and I haven't needed my wheelchair in ages, so long in fact that I'd have to check back on several social network sites to give an exact date and I'm far too tired to do that. I wish I had some dramatic tale to tell but I havn't. Having CIDP and living with it for me is all about having a routine and doing the same things day in day out so everything is measured. This isn't such a drag really, it'd be a lot worse if I set off to do something alone and found out half wat through that I run out of steam and end up stranded, so I stick with what I know and leave anything new I want to do for a time when there's someone around to rescue me if I do break down. I've managed to go on a few bike rides recently and when I come out of hospital next week I plan on doing a whole lot more. It's one of the things that I thought I might not be able to do again but I can and will. I guess that's what keeps me going, all the things that I used to do that I thought might be too much for me have become daily chalanges for me. When I decide I'm going to do something I have to work out how I'm going to do it and if I fail, what are the consequences.

I don't know if any of that makes sense to anyone but it all works for me. It's half three in the morning and I'm still wide awake but really tired and I may be rambling a little bit.

My next big target is to be able to cycle to the river with my fishing gear, spend some time there and cycle home. I'll be testing that one on the 16th of August. I might crash and burn or, if I do my homework and stay a bit focused, I might complete it and then it'll be another thing that's measured and it will become part of my routine. When that happens I'll find a new challenge and so on untill I can do all the things I want to do or know for sure that it's beyond my ability. Some people have warned me that I'm setting myself up for failure because I'll only stop trying when I totally fail, but I'm not going to wrap myself in cotton wool and hide away and if I crash and burn while trying to do something then so be it, as I always say "a bit of pain never hurt anyone".