Pain travels

The big problem with this pain condition is that it doesn't just affect the site of the pain, it effects my whole body.

If I'd lost my arm in the accident, it would be a lot easier (and apologies to anyone who has lost a limb and thinks this is crap, but I genuinely believe it's true). If I'd lost my arm, I'd have had a period of recovery, faced decisions about prosthetics and so on, but there would have come a time when the injury had settled and it was then all about adjusting (which I know would be a massive task - I'm not trying to minimise the effect of losing a limb). I'd have had to get used to managing without that arm, deal with the pyscological fallout etc. But at least everything else would work OK, and part of the adjustment would be learning to do two-handed things with one hand, compensating for the missing limb and so on. There are many very capable amputees out there who prove it can be done.

But it doesn't work that way for me. Not only does the injury never settle down - it's always as though it's only just happened - but the rest of my body is effected too.

Think about it - I don't have much use of my left arm. OK (well, it's not OK, obviously, but you know what I mean). But I can't just adapt to doing things with the other arm, because it's connected to both my bad shoulder and my neck, and using it sends pain through them almost as much as using the bad arm itself does (referred pain, I think they call it). Not only can I not adapt to doing things with that hand instead, I can't even do the things I used to do with it, because the pain is so bad. So I''m left almost with no arms. Same with walking - every step reverberates through my spine and causes pain in my shoulder and neck. People (even my GP!) sometimes wonder why I need to walk with a stick when the pain's in my shoulder. I've even had people challenge the fact that sometimes it's so bad it knocks me off my feet, because they can't see how pain in the upper body could effect the legs. But it's not that it 'effects' the legs, it's just that everything's connected, and pain travels.

On top of that, pain levels vary a lot, but you never know what's going to set it off. You could start the day fairly OK, then for no apparent reason it kicks off, and suddenly you can barely move. So you always have to plan for the worst, to make sure you don't find yourself stranded. But that means having to take a constantly negative view of what you can and can't do. Sometimes you're there frustrated because you know that you could have managed more, if only you had been able to guarantee nothing would change, and other times you're thanking your lucky stars that you were so 'pessimistic' about how you'd cope in a particular situation. It drives me nuts and I'm sure it doesn't help the not-so-close people understand the situation (colleagues, aquaintances, not close friends and family - they know, because they've seen it firsthand). I'm sure these other people think I'm being terribly dramatic and pessimistic in the way I approach things, and when the pain doesn't kick off, they probably think that even more. But if they saw all the other times, when it does, they'd realise that I really have no choice but to do it this way. If I banked on a good pain day, and got a bad one, how would I even get home!