Sunday, April 12, 2009

And yet it's so much more than my last post. I get defensive over my illness. I can't help it. It's all I have. People look at me and think I'm fine- that there's nothing wrong with me. I've had to fight for any respect I get over it. I've had to go for job interviews and say that I have a disability- that I might not make it in every day. I got "disciplined" in one job for my lack of attendance. I couldn't use their escalator and even though I tried to explain this, no one understood it. I even collapsed on the escalator once. Twisted my ankle, cut my leg and dropped a til unto the floor below. They still didn't understand.

And I try so hard to be nice. I really do. I try to understand everyone's perspective. Every little hurt that they might feel. But who understands me? Who actually cares that I can't live my life the way I want to any more? That I'm scared to go on holiday with my boyfriend because I know the plane is going to make too ill to leave the hotel. That I don't think I'm going to finish my degree because I can't keep up with all this work. And if I do finish I'll have a rubbish degree because I haven't been able to put my all into it.

I haven't put my all into very much these past 3 years and I hate it. I want to be able to volunteer with TinyLife and at my church's charity shop. And I want to be able to work a full 9-5 week without losing my voice or just calling in sick because I'm so tired I can't get out of bed. I want to go one weekend with my bf without having the dead leg freak out around him- or generally grumpiness from being so tired.

I want to be a normal 23 year old. I want to stay out past 2 in the morning. Be able to drink. To think that when I have kids I'm going to be able to keep up with them and not need more naps than they do.

I just want to be the old me.

2 comments:

Steveorben said...

I know how hard it is to have an illness that no-one can see. Mine is nowhere as dibilitating, but the pain I have in my knees is sometimes excrutiating. Yet it's apparently just "a bit of wear & tear". So I feel for you.
Steve

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