People only see a tiny part of what my life is like. I go out occasionally because otherwise I think I would have cabin fever, and I pay for it for days afterwards. Mostly I plan these days out with great care, always prepared to give it a miss if I feel too tired or in too much pain.
Before I go out I put on my makeup. Then I get someone to check it - it's a good job I have a memory for faces, because putting on make-up is a bit slap happy (pardon the pun) these days. But I need it. I don't want to look as bad as I feel. I certainly don't want people to feel sorry for me. Sometimes I put make-up on when I'm in the house on my own because I don't want to feel sorry for myself, either.
When people tell me I'm looking well I'm actually pleased. I don't want anyone to say 'God, you look a wreck!' I feel a wreck already, I don't need reminding of it. And I tell myself constantly, while I'm out, that I will have the next few days/weeks to get over this, so I'm going to enjoy it now. I pretend I can see things on supermarket shelves. Occasionally I look at ridiculous things I would never consider buying, but it makes me feel normal. And I so much want to feel normal.
But this is quite different from other people - including the DWP and all the various powers that be - assuming that because I am standing there, looking at something, that I can actually see it. I can't. I wish I could. I pretend I can.
Unfortunately everyone now considers themselves an expert on disability, and in particular on 'scroungers.' The media has fuelled this with its weasel words, and it strikes a terrible fear in my heart. We are becoming outsiders. When I was young, anyone with a disability was to be treated with consideration and respect. Now, as I hobble along, people shove me out of the way, muttering unkind words I won't repeat here. Well why not? The Daily Mail says such things. The politicians say them too.
But what they all seem to forget is that becoming ill doesn't make you less of a person. In my case it has made me grow in inventiveness, finding ways to get around problems just so I can function. The disabled, generally speaking, are very good at this. It is a mistake to treat us as people with no thought, no interest other than scamming money from the taxes of hardworking folk. Because I am a hardworking person. I still work. I didn't become a different sort of person just because I became ill.
In spite of my disabilities, I am keeping going, because to stop is to admit defeat.
And I will never do that.
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