Sunday 23 October 2011


I've just had a forcible reminder of how disabling my back problems are, and seeing as the flying monkeys reminded me how little of disability many people understand, I thought it might be interesting to describe how it's affected me the last couple of days.

For someone with disabling levels of back pain, I actually manage fairly well most of the time, so long as I don't do more than potter around the house and spend most of my time flat. It's just the parts of life that involve getting out and doing things that I have problems with.

I woke up on Friday with a touch of back ache, roughly over my right kidney - no idea why, but these things come and these things go and I'm used to being in pain, often far more than this, so I didn't pay it a great deal of attention. This one didn't go, it was still there on Saturday morning, but by this point I was ignoring it, or at least I was until I popped out for coffee with friends - which is often enough the only time I get out of the house during the week.

We meet in town, so that means a five minute drive and a short walk to the bar where we meet. I don't use my crutches in the house - the distances are shorter than my unsupported endurance, but they aren't shorter by much so I'm absolutely dependent on them outside. Almost as soon as I walked away from the car, that niggling pain over my kidney transformed itself into a stabbing dagger of pain running from shoulders to waist, my spine locking itself so rigid that even breathing becomes interestingly different, and it was patently obvious that it was using the crutches that was causing the problem. For someone else that level of pain might be completely disabling (especially as this is what I'm feeling past the opiates!), but I'm used to it, so it's extremely unpleasant rather than absolutely catastrophic. Coffee was a welcome distraction, but the walk back to the car was more of the same and I knew that I needed to get off my feet.

Back at the house I spent a couple of hours flat on my back listening to the football, which seemed to calm things down. With things settled I thought I'd go and finish downloading some software I'd just bought. My computer seat is oddly suited to me, wide enough to sit in cross-legged, which always helps, and with the tilt lock left open I can constantly adjust the way I'm sitting. I'm still severely restricted in time upright (I've hardly been able to touch the artwork I use the computer for this year), but not as badly as in other seats. This time it didn't help, that dagger of pain down a rigid spine set in again within just a few minutes, not even reclining as far back as the chair allows made any difference, leaving me wishing I could convince someone to fit me with a particularly restrictive full-length back brace (there are very good reasons I shouldn't use one all the time, but some days it would be nice to have the option to let me do stuff even if my spine objects). So back to the couch.

I did get as far as putting the oven on, planning on pizza for dinner - anything more elaborate would have been too long on my feet, but once I was flat again waiting for it to heat up I realised I wasn't about to move for the night. 'dinner' ended up as a packet of crisps when I finally forced myself to get up and turn the oven off. Lying flat meant the pain mostly went away (though of course lying flat brings its own set of minor and not-so-minor pains), but I have a bizarrely varying reaction to severe pain. Either I all but collapse and sleep it off, or it goes, but I can't sleep. So there I was all night, laptop perched on my chest, playing Angry Birds until the dawn chorus joined them for real.

I think I finally got to sleep about 8AM, waking up groggy and disoriented at about 3PM. I was finally up and running in something like a normal state of mind by about 6PM, so went to finish downloading that software, and there's the pain again....

I did manage to cook something today, so I'm not quite living solely on crisps, but the art of cooking while perched on one leg for as short a period as possible doesn't leave much room for culinary innovation....

It's 3AM, I'm typing this with the laptop perched on my chest, and I give it about a 50:50 chance I'll see the dawn, and I've no idea how long the elevated levels of pain will last, might be gone tomorrow, might still be here 3 months from now, I've learned to live my life making up my plans as I go along, because it's simply impossible to plan around a disability as random as mine. Meet me on the street and you simply see someone with crutches, that doesn't even give you a reliable indication of what kind of disability I have, you certainly don't see all the ways that it affects my life; the complexity of disability is utterly invisible, unless you're the one living with it. And the more people we can help to understand that, the better.

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