The impatient out-patient...

the other night I watched a very moving BBC documentary about Ukraine's "forgotten" children. These are children who were born severely disabled, and were allowed to be "given up" to the state by parents who felt unable to cope. This remnants of the Soviet Union, was sadly something I was aware of, having spent 4 months living with a (unusually!) socialist couple and their children during my four months in Russia. Basically Children were diagnosed as "incapacitated" or "feeble-minded", at which point they have no rights to an education or normal future and are sentenced to a life within unsuitable institutions (many live in old people's homes) and no way out. Seeing the acceptance of their lot was truely heartbreaking. One little boy especially got to me. He had no arms or legs, and yet had taught himself to move, was able to almost spin round a room, and using his mouth and a "rocking" motion, could pull himself in and out of his chair. As I watched him, one thought entered my head- "Jeez I'm CRAP at being disabled"! And I really am, predominantly because I'm so bloody impatient, and hate not being able to do things straight away. The truth is, I'm also out of practice, it's been a long time since I've felt so disabled; I've spent 10 years ignoring my limitations and doing the things I want to do anyway- travelling, partying, working hard, the fact I have a limp and the odd bit of pain hasn't seemed that important. I have a hard time relating to the idea of actually being disabled, this may sound weird, but I've never really had to. After my accident I wasn't disabled, I was injured. It was perfectly logical, that I couldn't do things, because it hurt like hell if I tried. Morphine became my best friend, and as my injuries (with the aid of extensive surgery) began to heal, I went to Physiotherapy and hydrotherapy sessions which enabled mr to reach the independence I was striving for. Even the year of wheelchair/zimmer/ crutches didn't make me feel disabled as I still felt like it was temporary, and I would get better, so I guess I didn't bother to use mobility aids as well as I might, figuring I wouldn't need them for long. I have an issue with a lot of mobility "aids", many of them I find a hindrance, rather than a help. At the moment, I use my stick a lot. This on the whole is a help, apart from if it sinks into soft ground, or if the ground's wet, or if you want to carry something (can't use the other hand-remember?)... But generally, yes it helps.. We have a lot of equipment still in place from my post-accident days, inluding grab rails on both sides of the stairs, again these are generally helpful, but my dead left arm has a habit of getting caught on them, making it difficlt to move! To me the most horrific mobility aid ever invented is the shower stool... In theory it should be the best: My legs are wobbly, so sitting down to wash is a brilliant idea... until you're done, and you need to get up by only pushing up with one arm, with only one good (ish) leg, and a slippery soapy shower floor... scary is not the word! I personally feel safer standing, and have now devised a system of taking my old faithful hiking pole ( taller than a regular stick) into the shower with me. when it's time to get out I place it on the floor outside as I step down, so far it's working. For the first time in my life I genuinely feel disabled. This week has been a trial for me. I am beyond exhausted ALL the time, finding it hard to focus- my eyes keep closing as I type this- and spend a lot of my time trying not to fall over. With my left hand as it is, I feel like I only have half of a functioning body, which is hard to deal with physically and psychologically, and have also had to deal with taking steroids that don't work ( you can't just stop, you have to be "weaned" off) but have made my face fatter and my hand puffy- all great for self-esteem! I am glad to be seeing Dr R on Friday, I feel he needs to see how bad I am, and am hopeful it may kick start some kind of treatment, as I don't want to wait much longer. I am also concerned that my parents may end up cancelling their annual holiday to Yorkshire- there's no way they could leave me in my current state, hopefully if that happens, they can reschedule to a later date. Sadly a reminder that cancer affects more people than just the patient...