Saturday 4 April 2009

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.

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