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.

City of Mabgate

Last week, in my infinite curiosity, I finally got around to trying the other local baths, which I’ll call B – It’s a bit further away, it’s not run directly by the council but by a community organisation, and its big draw is that it’s basically a perfectly-preserved Edwardian bathhouse. Opened in 1904, fell derelict at some point in the 20th century, then restored and reopened by the council in 1992, then threatened with closure in 2012, and passed into the hands of the community in 2013, where it’s now staffed by a mixture of enthusiastic volunteers and paid staff, and is a proper community hub again.

The most striking thing about it, from my point of view, is how green it is – Everything that in a “modern” bath would be blue is green – Green lane markings, pale green tiled walls, green wrought ironwork around the balcony and holding up the beautiful glass roof, green painted wood on the cubicle doors and even green lights in the corridor into the main bath. The slipper baths are long gone, and have been replaced by a gym, but there’s a hot plunge pool that I plan on investigating, and a banya that’s still in good working order and is frankly much needed. The pool is accessed by two sets of stone steps, the pool edge is brilliantly non-slip gritstone, and it ranges from 90cm to 175cm at the deep end – Not deep enough for anything other than a shallow dive, but also not so shallow that a tuck-turn is impossible (Though it is a challenge at the 90cm end if you’ve got long legs and shoddy technique, like I have).


When I was there, there were lane ropes in, and the swimmers ranged from “slow” to “standing completely still”. I’ll try a few more sessions to see if any sense of lane discipline can be instilled into the regulars, but if not I’ll make it my Official Floatytime Pool, where I go to relax and steam, rather than to train. And honestly, floating in salt water, lit by gaslamps, staring up at the stars? Not a bad way to spend an evening.


Relatedly: This is all making me very hopeful for the reopening of Newcastle’s 1920s Turkish bath and city pool, which I used to swim in as a teenager, and whose restoration was announced just a few months ago.


Anyway, I rode over on Monday night, parked in the incredibly convenient disabled parking space right outside the front door, swam about 400m, steamed, did a further 400m, steamed again, then 200m, then more steam, then rode home again. i might do the same in daylight later on this week.


Also this week, the social worker has been around again, has worked out that she can’t help me at all, other than to see if I was eligible for a personal budget to hire a carer, and now I don’t want anything, because the thought of having to talk to someone, even as an employee rather than a friend, is horrifying. On the other hand, having someone to take me swimming, possibly even swim with me in the water to help me keep pace, then ladle me back into my clothes and help me get back home could be useful.


And, finally, I’m researching bikes again, specifically “How on earth am I going to push a bike around the Mod 1 track?”


So here’s some stats; My 125 weighs 140kg, and is 95 inches long. The bike that I eventually want (That Suzuki Intruder VZ800 that’s been sitting at the local garage for months, calling to me…) is 98 inches long, and weighs 200kg.



(That’s her. That’s Trudy. 2010. Less than 9k miles. £4,ooo. She’s been fluttering her eyelashes at me ever since I picked up the Marauder after his 30,000 mile service.)

This is not a huge difference, but it might be enough to cause me issues. I think it’s about time that I booked in for some Direct Access lessons, to see how I feel about getting out and about on a big bike. Instinct and experience suggests that I’ll be smiling so much that the top of my head will be in danger of falling off, but caution also says that I need to really think hard and prepare well before trying a test.

Logic also says that since the Mod 1’s expiry is tied to the theory test’s expiry, I should try to do the two as close to each other and as close to the start of my DA lessons as possible, to give me the longest possible time before needing to re-take anything, in which to take my Mod 2.


As it stands;


My CBT was passed in August, giving me 21 months remaining.


The weather and, importantly for my mental health, daylight starts to pick up in about March, and that’s when I’d want to start doing my lessons. If I did my Theory in March, I’d have 18 months remaining in which to get my Mod1 and Mod2.


Finally, my lessons will take about a month or two, at the shortest (Starting with 8 and going from there), meaning that I’ll probably want to take my Mod1 in about April or May.


Assuming a pass in May, that’d give me a neat sixteen months in which to pass my Mod 2, and about five months before the weather got bad again and we lost the light going back into Autumn.


So, a vague timescale would be to take my Theory in March, my Mod1 in May and then my Mod2 in about July, giving me enough time to do plenty of lessons but not to have too long a gap after the last one before taking a test, since I know that I’ve already got bad habits on the 125 that I need to stamp out before doing a test (I spend far too much time with the clutch pulled in, for example).


It’s all pretty hopeful.


Finally, sadly, it’s pissed it down all day today, so I’ve not had time to take any pictures of my nice, clean, rust-proofed bike that I love possibly slightly too much to be natural. Tomorrow I’m going to wax him again and get photos before it gets too miserable.


Care and Caring

(I need to write about the past few days, because Shit Has Happened, but this first.)


So, this afternoon, I’ve got the social care person from the council coming around again, to sort out… I’m not really sure what. I think the financial implications, or something. But I’ve been thinking about a couple of narratives on care, which I keep hearing.


Actually, this all came about because of a discussion on having children, or not having children, in which someone said to me that I was selfish for not having children, because “I would sponge off their kids to look after me when I’m old”. I reasoned that I would rather pay a carer, instead of derailing a family member’s career or family life, since doing the former meant that I’d get professional care without the faff of family baggage, and would be creating much-needed jobs for usually young, usually poor, usually initially under-skilled workers. So, effectively, I wasn’t sponging off their kids, I was giving their kids a job. I was, categorically, making sure that there was a care industry, which meant that if their kids chose to continue their careers instead of looking after their ageing parents, there’d be a care system already in-place to take over.


So, narrative one is that paying a carer is a sign of someone being “abandoned”, and that all care work should be done for free, by family.


Let’s poke that a bit:


Plumbing is a job that’s usually done in the home, and that pretty much looks like anyone can do it, right? You just turn off the stopcock, unscrew the pipe join, cut it a bit shorter to add a connector, clip the connector on, braze in an elbow-joint, then put the new appliance on the extension. It doesn’t take many tools that you don’t already have, and any extra that you’d have to buy, you can buy cheaply. And you’ll pick it up quick enough.


And yet, very few people just expect to do their own plumbing. So why do we expect people to just provide care? Yes, you can probably go to the shops to get food for an ailing relative, but how can you guarantee that you’re doing it adequately- that you’re not forgetting something that they’ve also forgotten, or that you’re doing it at a time that’s right for them, without also making a mess of your own schedule, or how to know the balance between trying to get them to eat better-quality food, and bringing them the things that they like? Beyond that – You know how to wash your own hair, but what about doing someone else’s? How about how to dress them, without causing too much pain or emotional discomfort? What about if they need help with managing their sex life, or getting to an STI clinic, or dealing with incontinence? As a family member, you’re going to find that much more distressing (and they’ll find it much more distressing) than they would with a professional who, when you get right down to the knuckle, is being paid, and who has decided that the renumeration offered is financially “worth” the bother of wiping someone’s arse or making four hundred cups of tea a day.


Hiring a carer, or having one hired for you, is no more “being abandoned” than hiring a plumber or an electrician to repair your house is “being abandoned”. In fact – Think how many people with plumbers or builders or joiners in the family who’ll need building work done and will say “Oh, no, I’ll not ask our Andy, he’s got to be busy at work,” or (from the perspective of Andy) “I’ll do it at mates’ rates, but I still need paying”.
And yet, somehow, we forget that caring work – Whether it be the physical or emotional labour – is real work. And the burden does pretty much uniformly fall on daughters – Not always, and certainly not enough to say that sons are exempt, but if there’s two adult children, society will usually expect the daughter to care for her parents, and the son to not, because he’s got his own children to look after.


It’s even more pronounced when we’re talking about hiring housekeepers or cleaners -At least a nurse or a carer has some obvious skill that the general population doesn’t have, usually (in the public imagination) physiotherapy, or dealing with IVs, TPN and stoma, whereas people find it more difficult to parse that a professional cleaner or housekeeper will usually be a much better and more efficient worker than anyone could manage for themself.


It does look a bit like we’re not counting it as “work” because it’s “women’s work”.


And from that, we get to the kind of native suspicion of carers – Think how common the narrative of “My nurse was stealing from me” is, or “The cleaner ran off with the silverware” or “It turned out that the nice girl from the shop who brought my groceries was also selling my painkillers” is.


There’s two axes there – Class (“They’re poor, their employers are rich, so of course they’ll be tempted to steal”) and gender (“They’re women, who’ll accept money to do the things that women naturally should just do? They must be defective somehow. I bet they’re not beyond stealing, since they’re stealing already by not performing this labour for free”), and sometimes there’s a racial component too, especially in places where carers or nurses are usually recent migrants or the children of migrants.


Then there’s the “Nobody is that good” angle. When we’re being more honest, and realise that being a carer is a difficult job and not paid anywhere near enough for the amount of skill needed, we wonder “Are they doing it for the £8 an hour, or are they getting perks in the form of whatever’s in the fridge, the change bowl, and the medicine drawer?” which often comes in when the families of the person being cared for start to resent the (seemingly) more time that the carer gets with their relative than they do.


Even though, as we know, it’s not really “high quality” time, or not always – For every nice day where you sit and drink tea and talk about the war, there’s two where you’re hauling laundry and being reminded that you’re an employee.


There’s the other big point of discomfort (Ha, you thought I’d get through this whole post without mentioning class, didn’t you? Nope…) class. Most of us consider ourselves, if not solid working-class folk, at least not the hated bourgeoisie – The kind of people who don’t have aspirations above our place in the world, who don’t think we’re better than other folk.


It’s a bit of a paradox that in trying to define ourselves as “Not thinking we’re above ourselves”, we say “Thus hiring a domestic worker degrades them, and us into the bargain”. Because that’s really saying “Being paid for a day’s work is degrading”, or “Being paid to do traditionally feminine jobs is degrading” or even “I think that some kinds of work shouldn’t be renumerated.”


There’s nothing shameful in hiring a carer, because being a carer is not shameful. Nobody is degraded by getting money to do housework, or to go shopping, or to clean arses. All of those are jobs that need doing, and anyone that can do them well deserves to be paid for it. In deciding to hire a carer or a housekeeper or similar, you’re not saying that your time is worth more than their time, you’re saying that they will do a more efficient job than you could – whether that be because they’re better at it than you, or simply because that is their job, rather than trying to fit it in around another job – and that they deserve to be paid for their expertise.


And all this is even before we get into the social and familial implications – It’s easier to maintain a normal family relationship, or friendship, or partnership, when one participant in the relationship doesn’t have to compartmentalise the difference between “Percy, my friend that I love, and whom I sometimes help when it’s appropriate” and “Percy, the person who needs me to do these tasks for them, or they will starve atop a pile of their own shit” and indeed when the other partner doesn’t have to compartmentalise between “Friend that I love” and “Friend that I rely on to be fed and clean, so dare not piss off for fear of returning to the shitheap”.


It’s all the stranger when we consider how much work it was “normal” to contract out at different periods of history – Having a butler or a housekeeper, or even just a cook or a maid, was common amongst the upper and upper-middle classes right up to the Great War, and even now you see adverts for families looking for a live-in nanny or a full-time domestic. Beyond that, having personal servants to wash your hair, help you dress, wake you up in the morning and other remarkably personal duties (Even if, in a small household, that was just one duty of a more general member of staff) was pretty common right into the Regency – Indeed, look at drop-fronted travelling dresses, which became popular with fashionable young upper-class women in the 1810s; They meant that they could get dressed without help, pretty much for the first time. The old cliche of having someone lace you into a corset? Admittedly, it’s always skewed (People get confused between tightlacing, a niche 1900s practise, and corset-wear in general, so always imagine that the reason for having a lacing assistant is because of tightness, not because of the difficulty of putting on a lot of layers, most of them fastening at the back, when wearing a mountain of petticoats, or a pannier, or farthingale, or even much later a crinolene) but once you were into the social strata where you had to dress properly, rather than just skulking around in a tea dress or workwear, if you were a woman you pretty much always had someone to help you dress, even if that was just a friend or a sibling (Read anything by Jane Austen, and note that in the poorer middle-class families, the sisters will help to dress each other. In the richer ones, they’ve got servants). Men as well could expect to have a Gentleman’s gentleman, someone who’d, if not always button them into their shirts, would at least link their cuffs, help with a cravat, set their wigs straight or even just lay out their clothes for them.


The degree of personal care that’s considered “personal” changes, along with fashion. I could talk at length about how the smoking jacket set the stage for people going on pub crawls in kigurumi.


In short: There are so many reasons that having a paid carer is a good and useful thing, and there are similarly many reasons for having a paid housekeeper.




It’s been a bit difficult writing lately, since my mental health has plummeted, but today was a concrete health-related event, so I’m going to write it up.

The occupational therapist arrived at about 11.00 this morning. The door was unlocked, so after she knocked, I phoned her, and just told her to come up.

After a long, actually quite pleasant conversation, the following points were determined;

  • I couldn’t get a carer, because that was what PIP is for.
  • I could possibly get someone to help me to swimming and back, but again that was what PIP was for.
  • I could get a ramp built, as long as I had less than £23,000 in savings.
  • I could possibly get a fall alerter.
  • I could have my bathroom removed and replaced with a wet room (but I don’t want it)
  • I can’t have a downstairs toilet put in, since I can technically do the stairs.
  • I might be entitled to more benefits.
  • It is really weird, to the council, how fluctuating EDS is.
  • It is horrifying, to outsiders, to watch someone reset a dislocation.
  • There are servies which Dearest could access to help him as a carer, if he wants.
  • Their number-one reccommendation was “Move house”.

I don’t know how I feel about all this. Pretty much “not good” because I don’t like having people involved in my business, but I suspect it’ll do me good in the long term. Somehow.