Wednesday, 27 May 2009

Pity doesn't help

So, it was my sister's wedding at the weekend. Everything went really well and she looked absolutely stunning. It was a beautiful day, everyone had a fabulous time, and it was fantastic to see her looking so happy.

I was having a really bad pain day though. I needed my stick, which I'd really been hoping to avoid, and the TENS machine, and I even had to have the bouquet tied to the stick and my hand, because it was too heavy for me to carry. I had to keep sitting down during the photos and by the evening, I couldn't move. It all made me feel pretty self-conscious, but I figured all eyes would be on my sister, so no-one would be paying much attention to me.

Most of the people at the wedding I didn't know, but there were a few that I'd met before and that knew about my situation, as well as some family friends who'd heard about it. I couldn't believe it though, when they started coming up to me, acting all shocked, asking me what I had done to myself this time and seeming to not quite believe me when I said it was still the same problem. The fact that I'd told them all about it before seemed to completely pass them by! It's bad enough having to explain all this the first time, round, without having to go over it again and again, especially with people looking at you like you're some kind of drama queen! Even worse though, was the pitying looks they were giving me, and the way they kept saying things like 'but you're so young!'. My godfather even started crying. It made me want to scream! I know it must be really hard to see someone struggling and in pain - and there's no way I can hide it when it's like that - but the last thing I need is people pitying me!

It's shitty situation, obviously, but pity doesn't help. Be sympathetic by all means, offer to help if there's something you can to do make things easier - let's face it, I need all the help I can get! - but please, if you're going to feel sorry for me, at least wait till I've left the room! Seeing it written all over your face doesn't make me feel any better, you know. It doesn't make the pain or the limitations any easier to bear. It just makes me feel worse, because I can see all the things I used to do, the person I used to be, reflected back in your eyes. And it kills me! You think it upsets you to see me like this - how do you think it makes me feel? I don't need any extra reminders of how much my life has changed - I get that every time I try to move! What I need from you is just to remember that underneath all this, I'm still the same person. Look beyond the sling, the walking stick, the TENS machine and the medication, and see that it's still Me.

I don't need platitudes. I don't need to hear that I'm still young. And it doesn't help for someone who has no clue what it's like, to tell me that I 'just have to stay positive' - how could they possibly know what I have to do, when they've never been there themselves, and all they've seen of my life is a tiny snapshot?

I know it's probably that they just don't know what to say. I guess disability makes people uncomfortable and they try to cover it. They feel helpless and want to say something - anything - to try and make it better. But I have many friends who manage to be there for me and help me in all sorts of ways, without making me feel like they pity me. I know they care, I know they worry, I know they're sympathetic, but they never make me feel like I'm anything less than I was before the accident. It's taken me a long time to learn to accept help and to understand that people don't resent having to do things for me, they don't think I'm being lazy or difficult, and if they've offered to help, it's because they care, so it's OK to accept. But I don't think I'm ever going to get used to feeling pitied. And to be honest, I don't want to.

Saturday, 2 May 2009

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!