Sleep’s been eluding me a bit lately. This is nothing new, but it’s still not nice when it does happen. About five times a year I’ll have a week or two of sleeping for an hour a day, then suddenly flop and sleep for about thirty odd hours. It doesn’t sound like it happens often enough to be a problem, but when I can basically lose between three days and two weeks in a month most months, it’s disruptive and it’s a big part of what stops me from having a “real” job – Quite aside from the fact that I’m mentally ruined and physically broken, the fact that sometimes I’ll show up as a zombie or just sleep straight through my shift makes me an unappealing employee.


But yesterday was the first day of one of those cycles – 4am rolled around, I watched the sunrise from the chaise in my workshop, and I said “Oh, fuck, I’m not even tired.” Anyone who’s ever had a persistent sleep issue will tell you that it’s a thusand times harder to get to sleep after or during sunrise than it is before it, because of the melatonin drop and sudden cortisol spike that accompanies that particular pattern of slow-release natural light. And, as far as I knew, I had an appointment at either 10 or 10.30 at CA, which I needed to get the 8.30 bus to guarantee being able to attend. (On a related note, I also discovered that there’s a direct bus from my house to CA, which was nice, so I no longer have to stop off in town if I don’t want to).


So I arrived at CA for occupational therapy, at about 9.45, and was told “Your appointment’s at 13.30! Oh poor you!” You could probably see my eyelid twitching from low-earth orbit. So I got back on the bus and planned to have a leisurely swim at the University, then get back up to CA for about one. But lo, a phone call; “Oh, I’m meant to be seeing you at your house at one thirty, to deliver a perching stool and measure for grip rails”.


So I get back home, sore all over, confused as the proverbial pigeon on a zeppelin, and feling the first queasy flush of exhaustion from having been awake for about thirty hours by this point. One thirty rolls around, and there’s another phone call; “Make it about two, or quarter past two, maybe. I’m running late”.


When S finally arrived, she was actually really good – Measured me up for a perch (Set to as high as it would go, to act as an arse-rest rather than a chair), found two places in the bathroom that would take a handrail (Behind the toilet and next to the shower pipe) and was a bit amazed by the fact that all of the house’s plumbing is external. So, with stickers on all of my things, I await the actual installation team.


Adjunct to this, I spent much of last night starting work on the sample form of my PIP claim – I’m not going to officially start the claim until I have the actual wording down perfectly, since there’s only a two-week window, and in that time I also have to get letters from every relevant doctor, physio, occupational therapist, consultant, surgeon, and hypermobility specialist that I can. The PIP form is both incredibly grim in its own right – Look at the detail that they expect us to go into to be allowed a shre of dignity! – and grim in its effect – You have to spend a few hours dwelling on the limitations and misery of your condition. I wrote six hundred words about poo, admitted that I worry that I smell because I only wash about once a week, and described to a hypothetical total stranger the feeling of being suicidal due to physical pain. Stiff drinks all around, I think.


Anyway, next stop is to chase up Gynaecology (The rather wonderful gynaecologist who turned out to be the sort of person that I wouldn’t have minded wearing me as a glove was too professional and not enough of a ham-handed speculum jockey to want to do so, and was more than happy to just sign me off for a general anaesthetic based on my description of my condition alone) where I’m expecting to be referred to have my Mirena replaced before August, since, well, it runs out in August and I’m a big lad so it’ll probably run out fairly promptly.


And after that, it’s back to CA on Friday to get my elbow straps.


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