Missing Out
Spending the vast majority of my time alone means that it's something I'm able to cope with, probably better than most, but still there are times when I feel more isolated, or simply frustrated and left behind. Like now.Toes and Fruitrock (who unfortunately as predicted have got back together) along with some other friends have gone off to a local open day, held every year. I'm feeling sorry for myself because I can't go. This is an annual event, is always massively crowded, and I simply won't be able to access it. I'm not missing anything I haven't seen in previous years, but the fact that I can't get there makes me feel that I am. Particularly in light of yesterday.
We all went to a food festival/farmer's market. Toes, Fruitrock, me, Jen (Toes's previous ex girlfriend) and her 'new' boyfriend (of several years) Peter. It was a big deal for me. An inaccessible venue, for the first time I hired a mobility scooter...the ride along, battery powered kind. As I've mentioned before I don't have my own wheelchair. I applied for one a couple of years back, fully supported by my GP when my mobility was far worse than it is now, and due to the nature of EDS, I had to apply for a powered wheelchair. Again, fully supported by my GP. I was turned down. The rules of our local wheelchair services state very clearly that unless you use a power wheelchair for a minimum of six months full time solely indoors, they will not even consider you for a powered wheelchair capable of outdoor use. That ruled me out straight away. I refused to give up the limited amount of mobility I did have, which at the time was pretty much crawling around the house anyway, knowing full well if I went into a wheelchair full time not only would I never regain any further function, but that it would be incredibly damaging to all my joints and overall condition. I also knew sitting in a wheelchair full time indoors would rapidly lead to hypothermia and pressure sores. I weighed all of 32 kilograms at the time. I felt being forced to comply with such a rule would probably kill me. So did the initial assessor at the wheelchair services. I was told that despite all this, despite them knowing that I was physically incapable of propelling myself in a manual wheelchair due to dislocating shoulders, elbows and wrists I could not have a powered wheelchair. I could however have a manual self propel wheelchair at any time I wanted. Or a wheelchair someone else could push me in. Although they were aware that at the time I did not have anyone to push me. Sorry. Those were the rules. Ridiculous though they may be.
Fast forward a couple of years, through times so difficult I've yet to consider blogging about them, and thankfully an additional 10 kilos in weight, and I now have friends around me willing and happy to tip me out of so they can play with it, sorry, push me around in a wheelchair, but still no wheelchair. I've just reapplied for a second time through my GP, hopefully with more success as I'm going for the manual chair option, though with my size requirements it could still be difficult. I'm not going to be able to fit into any of the standard adult chairs, and I very much doubt the NHS wheelchair services will be sensible enough to allow a peadiatric chair to be given to an adult.
So, that's why, on Bank Holiday Monday, I'm sat here on my own blogging about missing out, when all my friends have been able to go out and have another great day. The NHS is great. I would hate to see us move in the direction of a fully privatised health care system. I don't have the answers to how we should fund health care, though in all honesty I'm not sure that we do have a funding problem, just a massive management and political interference problem coupled with total disrespect and abuse from the general public, but, but, but. The United Kingdom is far from a third world country. Or it's supposed to be. So, why am I sat here, missing out again for the sake of a wheelchair. Not exactly a luxury medical treatment. Like say breast implants for psychological distress.
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