Yesterday was shit. Just really, really bad.
Started off with the social workers, which was just awful in its own right. As much as they say that it’s all up to me what happens and things like that, I feel like I’ve been sort of trammelled into things.
The vague plan so far is that I will get a “Direct Payment” into a “Managed bank account” – Meaning that I will not see the money, so I won’t be frustrate and resentful that I’ve “got money” that I’m not allowed to spend on things that’d immediately help me, but only on specific help that other people think that I need.
It was a key point of mine that I resent the sense of people meddling in my affairs and telling me what to do. I know that, logically, the same thing is happening, but if I can ignore it, I won’t give increibly long lectures to anyone else about how it’s patronising to have a fixe budget for my care, but to have someone who is not me deciding that I absolutely need a personal assistant more than, for example, new brake pads, or a bigger light therapy light.
From that, we got to actually deciding what I needed. Broadly speaking, the plan was to have someone arrive at about 9.30 or 10 to wake me up, rearrange the bed into a “sitting up to work” posture, make me a cup of tea and a flask of soup or curry to put by the bed for dinner, then leave again. They’d then come back in the afternoon if needed, to empty the urinal, possibly sort me another snack, and give me a hand doing the normal household chores that I can’t do, like washing dishes or sorting laundry, or possibly on good days to do things like go to the market or set up the workbench for sewing or similar.
They then decided that I would probably need combined funding from the NHS to provide medical care, because the basic stuff that my friends do on a day-to-day basis is apparently so difficult and unusual and viscerally upsetting to the average person that they’ll need a nurse to do it. Even though I know that a nurse’s response would be “Go to A+E”. So I’m getting a nurse that also doesn’t mind washing hair and cooking and cleaning, rather than a gentleman’s gentleman who can also reduce dislocations. Probably.
I don’t want this. I viscerally do not want this level of interference in my being, even as much as I know that on a bad day, it’ll help. I worry that they’ll either decide that what I want is taking the piss, and thus withdraw support, or that they’ll decide that they want to push and insinuate themselves into being there every day, even on days where what I want to do is be out and away. I do not enjoy the company of other people, and I worry that there’ll be an implied contract to be friendly and make small talk, which I am not good at. In total, they were here for over three hours, and it was exhausting and upsetting.
And then yesterday evening I ended up gong out to a new person’s house and, for assorted reasons, having a horrible panic attack that resulted in me riding up to Best Friend’s house at midnight and collapsing onto the settee in his living room and wibbling and making depressed, terrified noises until I was calm enough to get back onto the bike and ride back home. I was still paranoid enough that the taxi that decided to follow me three quarters of the way home, two inches off my back tyre, really put me further on edge. As much as my acceleration was better, I wasn’t willing to break the speed limit, but he was – So he’d shoot up to fifty to catch up, then slow down to thirty again when he was completely filling the mirrors. Considering that I took an insanely convoluted and little-used route, he was definitely doing this for “fun”.
On the other hand, driving across the city in the pitch black, with half the streetlamps out, and barely any traffic, as the ground frosted over and the sky cleared to reveal millions of stars, with the view out over the valley as I got nearer to home… That was nice. That was worth it for the whole rest of the shitty day.
Today I’m in pain. I’ve got a short deadline that I’m not going to make, my tutor hasn’t responded to my email asking for an extension, my legs and shoulders and neck hurt in a way that suggests they’ve been too tense for too long, and I’m just not feeling great at all.