Dr L2 was really nice, believed me, trusted that my graphs were accurate… And gave me depressingly unhelpful advice. She also said there was no sleep clinic nearby who could take me.
The advice I’ve got – Start my “going to bed” regime earlier, about 10pm rather than near to midnight, and don’t read after that point. Make my bedroom be purely for sleeping in, not for anything else. She seemed to think that my exercise regime was doing me good, so to stick to that. And to stop taking nytol, which I would rather not be taking anyway. She also advised that I get up every morning at about 9am, as I have been doing anyway.
Let me point out what this means in reality.
This means coming home from my swim, and immediately turning off the lights and lying in the dark. With no chemical assistance to get to sleep. I’d shown her the graph which showed that, sans-nytol, I fall asleep about an hour or an hour or a half later every night, leading to occassionally going to bed in the early hours of the morning. This could mean lying still, in the dark, wide awake, until sunrise.
I am pretty sure that this will nuke my mental health, with nothing to do overnight but either ramble through my favourite daydreams (fun) or descend into one of my more usual depression-anxiety-horror spirals.
Well, it’s a month. I can do anything for a month. And this will make an even more interesting graph. Next appointment is on the 11th, also with Dr L2.
For the curious, here’s the whole first month’s graph:
Oh, and I got a Stanmore update – Dr R did nothing in February, other than to mark down that there’d been a fuckup, and Dr L2 reckoned that they wouldn’t be able to refer me out-of-area until they’d been to the funding committee, and made a case for why I personally deserved funding.
So, yeah, all of the time between July 2014 and now has been wasted. She’s promised to get someone to phone me back, soon, about progress with the funding committee.
I have been in pain, howling, life-wrecking, sanity-shredding pain, for the fourteen months since seeing the hypermobility clinic. In those fourteen months, I’ve become almost entirely housebound, and have only very recently started going out again for anything other than completely essential errands. Those fourteen months, in which I’d been clinging to hope by racing to the door every morning to see if my Stanmore admission had been confirmed, have just been wasted.
Fuck everything with a sharp stick.