It's taken me a while to even start writing these posts because at the moment I'm even less functional than usual. Overheating is one of the less pleasant symptoms of OI, and in case you hadn't noticed it's been rather warm lately. And then there's the fact that I've had a cold on top of my chronic sinus problems for more than 3 weeks which has had me whimpering a lot in between doses of painkillers. Basically all I've been fit for is laying on the sofa watching NCIS.
Edit: Another week has passed since I first sat and started writing this post before I found the spoons to come back and have another crack at finishing it.
I suppose I should start off by explaining exactly why I get the benefits I do. I'm generally of the opinion that my medical history is my business, not yours. Which is a bit odd because I'm a fairly open person. I think it's a reaction to the fact that because I'm disabled my medical history is supposed to be out there for public consumption. I'm also definitely of the opinion that my income is my business. But I've been called a "scrounger" by our politicians so many times that I've been ground down.
So here's my history:
I get Disability Living Allowance. I get the high rate mobility (HRM) component and middle rate care (MRC) component. I get HRM because I'm virtually unable to walk. I can walk a very short distance but only very slowly and with extreme pain and difficulty. My aforementioned osteogenesis means that a good many of my joints have been shattered so have extremely limited movement. The rest of my joints are held in place by tendons and ligaments of such poor quality that my 4kg cat can dislocate my knee by sitting on it. Because my tendons and ligaments don't do a good job of holding me up I fall over very easily, which is really not very safe in someone with brittle bones. Between the pain, the difficulty, the slowness and the danger involved in walking I'd be pretty much housebound without a wheelchair. I couldn't even walk as far as the bus stop at the top of my street before my knees had swollen up so much that I couldn't bend them for the rest of the day.
I then get MRC because I need constant supervision due to injuring easily. Activities during which I’ve broken bones include walking1, sleeping2 and eating3. So the government can't scrimp on my supervision by telling me to cut out risky activities cos, you know, eating and sleeping are essential for survival.
I've had osteogenesis since I was born (well, actually, since I was conceived) but until about 5 years ago I was perfectly healthy. There's a difference between illness and impairment. For many people they overlap but for many more there's a great deal of difference. So up until the age of about 26 I had a physical impairment, but I was a picture of health. At one point I didn't even notice that my GP had deregistered me because they hadn't seen or heard from me in so long. Being a healthy young person I earned for a significant chunk of my degree despite typical student work like bartending being not accessible to me. When I graduated I took on 2 part time jobs rather than a full time position. In addition I got paid for writing articles, doing media stuff for the now defunct Disability Rights Commission, and eventually I progressed far enough through the stand up circuit to get paid for making people laugh.
Then I got sick. I've always had slightly dodgy sinuses but starting in 2004 they got progressively worse. I can remember the day things started going downhill actually: I was in Edinburgh and it was the day I went to see Laurence's show. I've always taken co-dydramol for my bone and joint pain. But that day in Edinburgh was the first time in my life I'd had a headache that co-dydramol couldn't touch. I might as well have swallowed 2 M&Ms. These sinus pressure headaches became more severe and more frequent until I became unable to work in 2006 because spending roughly 2 days a fortnight in bed in agony doesn't please an employer.
How painful can a blocked nose be? Well, having grown up breaking my bones regularly I have a much higher psychological tolerance to pain than the average person. I recently had a nurse in a laser clinic describe me as "remarkable" because she was burning me with a laser and I didn't even blink. 2 years ago I broke my nose and didn't notice for 3 weeks because the pain was so minimal compared to what I'm used to in that region. It was only when I reached 3 weeks I thought "hmm. If it was anything other than broken it'd be healed by now." I've never, ever, taken anything stronger than 10/500 co-dydramol for a broken bone (or 3) but nothing less than morphine provides any relief at all for my sinuses. Morphine may relieve my pain but it comes with a side-effect of making me "drunk": it reduces my inhibitions and gives me verbal diarrhoea. So for around 2 days every 2 weeks I have the choice of being either in too much pain to work or too stoned to work. Someone who needs 2 out of every 10 working days off is not employable. 2 days every 2 weeks is an average during a "good" period. If I catch a cold they can last for months because related to my sinus problems I also have a rather buggered immune system. And my sinus pain can be bad for every one of those days for the whole 2 months it takes me to shake the cold.
"Why don't you work part time?" Because employers expect to know when you're coming in to work. Even if they list 'flexi-time' as an option they still expect you to be present at certain times and they like to know in advance when you'll be coming in. I can't predict in advance which days I'm going to be ill.
"Why don't you work from home?" I doesn't matter where I'm located. On days when I'm too ill to work, I'm too ill to work.
"Why don't you write?" When I had a contract as a columnist I'd get a phone call on the Tuesday asking me to submit an article on Friday. If I was ill on the Wednesday and the Thursday I'd have either nothing to hand in on Friday or I'd hand in something written under the influence of morphine. Either way, my contract would not get renewed. And it's taken me 8 days to write this piddling little blog post.
If I were otherwise unimpaired and just had my sinus problems I could probably manage a physical job that require little brainpower on ill days by taking so much morphine I couldn't feel a thing. I'd make absolutely no sense so would be unable to do a "thinking job", but I could manage a repetitive task job like unloading loaves of bread from a trolley and placing them on a supermarket shelf. But I'm not otherwise unimpaired, I have a knackered skeleton and "thinking jobs" are the only kind I can physically do.
I've really explored all the options and working is just not possible. So I get Incapacity Benefit. This is topped up with a very tiny amount of Income Support to make up the total a severely disabled person living alone is deemed by the government as needing to live on. I also get Housing Benefit to keep the roof over my head.
Part 2 coming soon. Unless this sore throat and bunged up ear turns into another cold...
1 December 2008 I tore a tendon out of a metatarsal which pulled the tip of the bone off with it. This injury was the result of simply walking normally.
2 In the early hours of 01/01/2000 I slept in an awkward position. I got woken up by blinding pain at about 4am. The awkward sleeping position had crushed not just one but several vertebrae.
3 As a child I caught my forearm on the edge of the table while eating dinner. This light tap caused my forearm to snap (I only have one forearm bone now where the radius and ulna have been broken so many times they’ve fused together).
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