So much of being disabled has always felt like a waiting game, organising papers, waiting for doctors, referrals, diagnoses, misdiagnoses, back, and forth, wheelchair services, appointment writeups, benefit applications, benefit reapplications. A constant run of waiting.
I’m getting worse. I’ve been getting worse over time. I haven’t been getting better and I have been losing mobility, energy, functionality. I’m very ill right now. Maybe I’m having a few bad days, I’ve got an infection, am awaiting surgery, haven’t been eating enough, am having real issues with managing my body temperature, there’s every reason why this might be temporary, but there’s also the fear that it might not be. Lost in academic work, since I returned to my parents for the summer, I haven’t gotten around to organising care for myself for the summer. When I’m here, I get help with some things, and it’s left me in a situation where everything is tolerable so organising care has been left on the backburner, and now quite suddenly I’m unwell, and I wish I had done it before.
There’s such a price to pay, being disabled, and I’m watching the life I expected to have, and the life I had settled to when I started getting ill, both rush away from me. I’m far too ill to imagine working one day a week, and yet I’d planned to do some peacekeeping in Palestine, and then settle down to postgraduate work, whilst doing a part time job as well. When I became disabled I hoped to work a few days a week and do distance learning for a postgrad. Now, I’m hoping to manage to write 1500 words, normally a few hours work, in the next week or two. I envy my first year self, who had the energy to rush through a good piece of work, but I also envy the self that was studying this academic year, always ahead on his deadlines.
For normal people, not being well isn’t too significant, it passes, and I hope this will, I’d planned on hill wheeling and camping for example this summer. However, being chronically ill already, getting worse – however many arguments there are for it being temporary – is terrifying. I couldn’t continue my degree if I stayed like this for long, and my degree is the last thing I have, and my most valued activity. So hopefully this is just a dip and once I’ve had my surgery next Tuesday I can start bouncing back. And I’m not going to think about whether I could be wrong, because all that’ll do is waste energy worrying.
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-Whence I am blogging specifically about disability