Violations

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.

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4 thoughts on “Violations

  1. I know it is intrusive and upsetting to have other people intrude into your life, even if it is theoretically “for your own good”.

    When my son was put on the At Risk Register 20 years ago, Mike told our social worker to “F*ck off” for those very reasons. She later became a very valued support to me, and saw our family mend and get back together (for some time I wasn’t permitted to live at home).

    So I would suggest sticking with it, seeing if you can develop a rapport with your carer, and fine-tune the care that is provided over time. It may be that you never feel totally comfortable with it (dad is resisting human intervention for that reason, whereas technological fixes suit him down to the ground eg bath lift).

    But I hope this is the high watermark of your distress, and that in time, things will ease.

    Sounds like the social workers have done a good job in spotting your eligibility for health funding. So that much is good news to me – as there is no question that your care needs arise from your health problems to my mind.

    All warmest wishes Percy. C xxx

    • Thank you πŸ™‚

      I’ve warned them in advance that, although in clinical terms I’m compliant and rational, in personal terms I can be a vicious, mean-spirited arsehole who has a bit of a porous mouth-brain barrier and will ocassionally and wholeheartedly tell well-meaning people to bugger off, usually along with a lengthy political rant. And, indeed, I admitted that this was worse on bad pain days, where sometimes I basically need to be handled like a very skittish and human-averse bull that nontheless needs his hooves checked.

      Fingers crossed that, much like your you and your family, having a personal assistant around will just become part of my “new normal”, and will be at a level that I’m comfortable with.

      I just don’t like that feeling that I’ve got that they’re like vampires – I opened the door by phoning them, once, and now although I’ve tried to get them to go away several times, they’ve insinuated themselves into my life, and I worry that they’ll never leave.

      Plus, there was a very patronising “Oh, I know, some days you’ll be able to do more, you’ll just need chivvying into doing it! Haha!” from the younger of the two, that made me want to bite her head off. Very difficult to explain to an abled person what it’s like to be lying perfectly still, mind racing with all the things you want to do, but completely unable to do any of them. Laziness is not one of my sins. I don’t want some ill-informed oaf showing up and deciding to that all that I need is a bit more sunshine and a bit less eyeliner…

  2. Dear Percy, I do not have time today to respond properly. But I can leave you with a link to a piece of work I was involved in recently – produced for the very reason that social services can struggle to understand fluctuating conditions of all kinds!

    https://www.actionforme.org.uk/uploads/pdfs/implementing-the-care-act.pdf

    And as a parting shot, it will probably be the case that you have to “train” each carer to some extent eg so they understand that it is not laziness or lack of motivation that hinders you. That assumption really is extremely vexing.

    And they’ll just have to cope with the fact that your illness/disability will inevitably have physical and psychological manifestations. It’s all part of their job!

    For myself, I feel relief that hard as it is, you are getting some professional care input now. I hope you don’t mind me saying that.

    Much love “very-skittish bull”! C xxx

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