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.

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!

You wouldn't treat an animal this way . . .

I've watched a lot of TV over the past two weeks, since the only thing I can do at the moment is sit still and look straight ahead. The other day I was watching a vet programme, and there was a dog that had been hit by a car. The vet told the owner that the dog's injuries meant he was going to be left in chronic pain, and that obviously wasn't fair, so the only option was to euthanise him (his words).

It's not like this hasn't struck me before, but nonetheless I did just sit there for a minute, dumbstruck. Then I got furious. So it's not fair to keep a dog alive in chronic pain (and I completely agree, it's not), but it's OK to expect humans to live with pain indefinitely? Pain that's never going to go away, never going to change, never going to get any easier to bear? What, does the fact that we can comprehend the pain better than an animal, can identify it's source and quantify it's effects, mean that we deserve to endure it for longer? That's our punishment for our 'higher functioning' is it? The more you can understand something - not just at the base, instinctual level, but intellectually as well - the more you shuold have to put up with it? An animal, that has no concept of the implications of it's situation, the problems it's going to face, how long it could go on for, is put out of it's misery. But a human, who can understand all those things and so much more, is left to suffer.

And if the human in question decides that actually they aren't willing to do that, that they're going to take matters into their own hands, society jumps on them, saying what a terrible thing that would be, that it's weak, selfish, morally wrong, a terrible waste of a life. I'll tell you what's a waste of life - an intelligent, fun-loving person with their whole life ahead of them, suddenly unable to do any of the things she used to, unable even to sit, eat or sleep without pain, just because some idiot in a car couldn't keep their eyes on the road. That's a waste of a life.

Yet this society, which claims to care so much about everyone and everything, claims to abhor cruelty or suffering of any kind, thinks that's OK. People who haven't been there - who often don't even know anyone who has - and have no right to judge, think it's OK. Well if it's so OK, why don't you try it? You try living with endless pain, waking up day after day in agony, knowing it's never going to change, and just see how you feel. And it's not just about people in my situation either - what about people facing terminal illness or degenerative disease - they're in the same boat. You think that's OK too? And don't start with the 'life is sacred' bullshit - it's the QUALITY of life that should be sacred, not the mere fact of a beating heart and recognizable brain function.

No-one should be left to suffer - animal or human. It's cruel, it's inhumane and it's unforgivable. It makes me sick to live in a society that forces it's loved ones to die a slow agonising death, or live an endless miserable life, rather than give them the gift of setting them free.

What's the point?

For over a year now I've been fighting the doctors trying to get me to take anti-depressants. Ever since I started having flashbacks of the accident, a few months after it happened. I didn't want to be taking even more pills, I didn't want my feelings dulled by medication, I didn't want yet more side effects.

But now I'm sitting here in the dark and all day all I've been thinking about is killing myself, and I'm wondering why I fought so hard. Right now I desperately want something to make it all stop. I'm desperate for pills. I just don't know how I can go on living like this. My neck has been so bad for the past month that I'm now off sick, confined to my chair, unable to use even my good arm because that just sets off the trapped nerves and the headaches. All day, all by myself, seeing nothing but month after month of this stretching out before me. What's the point in that? I can't even work now - there's nothing left. My hobbies are gone, my social life's gone, all I had left was work and now I can't even do that. So what's the point? Why am I bothering to get up in the morning? Why am I putting myself through all this pain? It's not like there's any magic cure coming along any time soon. I don't want this, I didn't ask for it and it wasn't my fault. It's just not fair.

I wish I was dead, I wish I could just fade away and not feel it any more. You know the only reason I didn't do it today? My sister's getting married in a few weeks and I couldn't bring myself to ruin her big day.

My counseller told me once that if you really wanted to die, then any date would do - no need to do it today - there's no hurry - put it in your diary and schedule it properly; if you really don't want to live any more, the date doesn't matter. I know the thinking behind it is that you'll've changed your mind by the time you get there, but right now, the whole scheduling-it-in-your-diary thing seems like a bloody good idea.

The people who keep me going

I'm really lucky - I have lots of fabulous friends who've really been there for me since the accident, both emotionally and physically. My mum also all she can and my sister is amazing - I know I'm really lucky.

But as hard as they try to help, and as upset as I know they get to see me in this kind of pain, they can never know what it's really like. No-one who hasn't experienced it can know what it's like.

The people who love me are always trying to come up with solutions, desperately looking for the magic cure. They regularly ask me if I've thought of 'x' or tried 'y'. Sometimes I have and sometimes I haven't; sometimes it's a good idea and sometimes it's not. I try to remember that they're doing it because it's the only thing they feel they can do to help me, but the truth is it makes me feel such a failure. It's crazy, but I feel that if I were dealing with this 'properly', if I were getting it 'right', they wouldn't need to be making these suggestions, because I would be able to cope on my own. Not only that, but each suggestion reminds me yet again that this is what my life is now, that it's not going to change, and that I didn't deserve this.

And the awful thing is that it makes me push people away, reject their ideas because I can't cope with the implication that I'm 'doing it' wrong, or I just can't bear the reminder of what my life is now. I know they don't mean it that way, I know there's no 'right' way to deal with this, and I know that I'm doing pretty damn well to still be working, seeing friends, getting out and about even a bit. But I'm ridiculously sensitive to feeling a failure (not surprising I guess, given that, even as an over-achiever, nothing I ever did as a child was good enough - my dad delighted in telling me I was 'too stupid to be his child'), so each time a friend makes a suggestion, instead of seeing someone trying to help me, all I feel is that if they had to suggest it, they must think I'm getting it wrong. I know it's mad, but what can you expect - from the very beginning I was taught by the people closest to me that I wasn't good enough, and that stays with you.

I need my friends help though. Part of the problem of dealing with something like this is the fact that you can't get the help or resources you need unless you know the right questions to ask. It's almost like there are 'key words' that trigger the right responses, and if you don't use those words, you're stuffed. Even the most helpful of doctors just don't seem to think that you might need those things, no matter what you tell them about your life (more on 'Doctors who don't listen' later!).

Most of the help I've managed to find, outside of the most basic of things, has been because a friend has said 'have you thought of...', or 'why haven't they given you ...' and when I've specifically asked for it (asked the right question) suddenly the door opens. From Occupational Therapy visits to Access to Work assesments, bits of equipment I didn't even know existed - it's all been down to friends doing research, asking questions, pushing when I didn't have the energy to.

So I'm grateful to them for constantly looking for that magic cure. But I'm scared that the negativity they often get back from me when I just can't cope with it any more, will drive them away. And then what would I do? Their love and support is what keeps me going.

A history of pain

Although there were no broken bones, the accident left me with serious medical problems. The pain continued, and it became clear that the real problem was in my shoulder. I had trapped nerves in my neck, plus bad back pain and pain across my chest. I still have all of these problems, and more, two years on.

I can't use my left arm because of the pain, and I can't use my right one much either, because that triggers it too. I can't lift or carry things, I can't walk far and I often have to walk with a stick so I don't fall. At times, the pain is so bad I can barely draw breath. I get terrible migraines from the trapped nerves in my neck, as well as things like my face going numb, my eyes drooping and not focusing, all of my teeth hurting, and losing the sensation in my hands.

I've seen doctor after doctor, had physio (made it worse), injections (made it worse), used TENS machines (burned holes in my skin), been on Pain Management courses (didn't help) and tried god knows how many pills, most of which had such awful side effects that I felt worse than I did without them (and anyway, they didn't help ). Some of them caused severe depression, and even left me suicidal. I now have just one pain killer that sort of works, but it only helps a little bit, and I have to take more pills to deal with the side effects of that one, the migraines and the fact that I can't eat properly because the drugs make me so sick.

In the last couple of months, the problems in my neck have got worse, so I now have to have my left arm in a sling most of the time, just to support the weight of my arm (do you know how long it's taking to type this with just one hand!). The doctors' only explanation for my symptoms is that I've got 'chronic pain' and that basically my nerves are sending pain signals when they shouldn't. The only thing they can offer is pain killers, and medications and treatments to interrupt the electrical signals from the nerves - none of which have worked.

How I got in this mess

Two years ago I was in a bad car accident. Someone coming the other way was speeding and lost control on a corner, slamming into me headfirst. Every day since then I've been in pain. I've been told I always will be.

There seemed no reason for the accident - it was a bright sunny day, the roads were dry and conditions were good. The other driver was just in too much of a hurry, and I pay for that person's haste every day.

I was cut out of the car and airlifted to hospital. I was terrified I had spinal injuries, because I was losing the feeling in my hands and feet, and my neck was really painful. I could hardly breathe because of the pain in my chest. The hospital did a myriad tests, and finally announced that I had no 'serious' injuries and would be fine in a few days, then they sent me home. I was in terrible pain, but they said it would clear up quickly. It didn't, and two years on, it still hasn't.