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.

Admin, bloody admin.

On Friday I got back to Occupational Therapy at OT for what turned out to be the last time – This was the final appointment where they show all the awesome disability-appliances, tell me how much easier life would be if I had an electric tin opener or a load of ergonomic pillows or an easy-to-grip pen, then break the news that they can’t prescribe me them, and that I’ll never be able to afford them. The cheapest item is the £5 tap-turner, for crosshead taps, which won’t necessarily fit *all* crosshead taps so you just have to buy it and see.

I now have a copy of the OT Stores catalogue, which may be the most depressing item in existence. An awful lot of “Your life is a sad mess, so here’s a load of white, beige and institutional blue stuff which might make it marginally easier to physically get around, whilst also ruining your self-image and making you feel reliant on us”. Because the worst bit about being disabled is the part where you can’t forget it, even on the days when you feel basically all right. There’s a grab rail next to my toilet, for when I can’t stand up on my own, and a flannel in the sink for the days where washing myself otherwise is impossible. Next to my bed, I keep a stack of high-energy food, Lucozade, and empty bottles. Even on days where I’m doing all right, where I race downstairs, make myself a pot of treacley Polish coffee, then go into town, I have to go past the extra hand-rails on everything, the perching stool in the kitchen that lets me cook, and then spend a few minutes debating whether to stick a full set of orthotics in my bag “just in case”, alongside the morphine and the overnight box of medication in case I end up trapped on a friend’s settee overnight.


It sounds like a minor whine, but I don’t want my house to look like an old people’s home. I want my decorating – Which I put a lot of thought into – to stand on its own merits. I want people to sit down in the living room and notice the Meiji-era table, the well-worn and comfy Chesterfields, the open fire in its cast-iron surround, the furisode hanging on the wall (Which changes with the seasons) and the bookshelves bending under the weight of a lifetime’s worth of books and scientific equiptment. Not to have to step around a contraption of white metal tubes and blue straps which helps me get in and out of a chair. I want people in my bedroom to feel drawn towards sitting on the bed, curling up in the pillows and sheepskins and blankets heaped up against the headboard of the victorian gothic fantasy that is the frame. I don’t want people in my bedroom to feel as if it’s a holding pen for a cripple, covered in beige “disability adaptions” and that they have to sit on a stool as if they were visiting my bedside in a hospital. I want people in my workshop to sit on the chaise longue, look around at the things that I’ve made, and be impressed, not to fixate on the weird contraptions around my workbench which make it safe for me to use.


I accept that I need things to make my house easier for me to live in – That there’s going to be an emergency walking stick in every room, that my bed has tall corner posts so that I can use them to steady myself as I stand up, that I have a mini-kettle so that I don’t need to try lifting a full one, but I resist the idea that all disability adaptions have to be so clearly marked-out as such, with their medical colour scheme, their wipe-clean vinyl padding, and their right-angled, safely-rounded shapes. I want grab rails made of turned cherrywood, support frames laquered black with brocade straps, multi-compartment pill boxes which look like cigar cases. There’s been a pleasant alternative to the “Everything must be beige” meme lately, in that disability appliances have started to be available in “cute” – Pastel-coloured crutches, heat packs in the shape of zebras – but there’s nothing commercially available that’s made to just complement the decoration of a room. The world of orthotics is slightly better than that of home appliances; My splints are mostly plain black, prostheses are getting to the point of both serious functional and aesthetic customisation (for a fee), and wheelchairs are available in almost any colour that you could spray a car in, but there’s still room for improvement.


Anyway, this wasn’t even today’s major complaint. Today’s big whinge was that RL had actually entirely forgotten to make the rheumatology referral for me which I’d been promised on the 22nd of May. I only found this out when I asked at the rheumatology department at CA on Friday, having decided to pop along and see if anyone knew how much longer I’d have to wait before I heard about it. And lo, nobody knew anything about it. Many long phone calls later – Phone calls which, if I’d not known to make, since nobody told me to make them, I’d not have done and thus wouldn’t have got my referral – and RL have promised that they’ll remind Dr F to get it done, and get it done quickly.


So basically, I might not get to see my local rheumatology team until after I’ve been down to London, meaning that I won’t be prepared for Dr Kk’s team, and meaning that they won’t have anyone to discharge me back into the care of.

The good, the bad, the medium, and a massive exploration of my weirder anxieties, apparently.

Actually, this is a several-part blog post.


The medium;

I’ve now had grab rails installed on the stairs and in the bathroom, which is good, but does make the house look a bit like a care home, and have been back to OT to get an epicondylar clasp made – Basically a pair of pads which grip my forearm in such a way that they prevent the muscles pulling too hard on the attachments at the elbow, thus giving the tendons time to become less inflamed. I have to wear it constantly for three weeks, and it’s already giving me a rash after a day and a bit.


The bad;


Yep, I was supposed to be at iaido this morning, but my partner started off unwilling to drive me (It’s a club we both go to, about fifty miles away – He was going to go without me) since “I might just fall to bits”. This is kind of one of those arguments that can go around in circles forever; I know that about half the time, I’ll end up hurting myself at iaido, and about a quarter of the times that I hurt myself I won’t be able to finish the session. Since Sensei knows what’s wrong with me he doesn’t mind, and I honestly think that risking a minor injury that’ll slow me down for a day, in order to continue with my sport (The last point-of-continuity with my life Before) is a risk worth taking. The trouble is, I feel that after the insurance concerns have been worked out, it’s really my business to decide whether or not I’m capable of doing something and whether or not the risks are worth it. I’m not having a manic episode, I’m generally known for having a realistic grasp of my own limitations, and flat-out arbitrating someone else’s activity levels is a bit too infantilising for my tastes. I can’t just “Wait until I’m better” because I’m about as good as I’m going to get right now, and I really don’t want to just spend the rest of my life slowly withering down to nothing, trapped in the house, when I know that I could be out doing the things that make me happy. I know that he’s concerned for my health, and that he’s not got some sinister intent, but I just wish that he’d either trust me when I say that I’m well enough to train (And I am actually feeling really fit today, more’s the pity) or have a proper conversation about why he desn’t think I’m fit enough to train. There’s also, of course, that nagging feeling from years of bad conditioning of “He just doesn’t want to be seen with a cripple, an embarrassing cripple who can’t do anything right, who stands out as being a failure, who everyone pities, who reflects badly on him because they’re whiny and weak…” And I know he’d never mean that, because he’s not like that – He does just genuinely worry about me – but in this instance he’s expressing it in a cackhanded way that keeps hurting me.


I don’t know what to do about it, but at the moment, as much as giving up iaido is going to hurt, it’ll probably hurt less than the feeling that I get every time he says that I shouldn’t go.


Anyway, lovely SummoningEsther has linked me this list of local EDS support groups, which is a relief, since there’s one much closer to home than the nearest meeting of the general Hypermobility Syndromes Association. I’m not sure if I want to go – I have weird issues about feeling not ill enough to need a support group, plus I’m really shit with new people and tend to be incapable of reigning in my unpopular opinions (to the degree that the shape of my nose is a testament to my character). They might be an appropriate place to find people who’ve had similar troubles, and honestly might just be somewhere where I can find new people to socialise with that take life at a similar pace to what I do. Despite my best efforts, I feel both intensely lonely right now and terribly scared of meeting new people; My best friend is getting a new housemate this month, and I’m mentally preparing myself for just not seeing him in-person much anymore, because the thought of being visible to a new person, in a context where I’m not able to directly manage the lens through which they see me, scares the hell out of me. I don’t want to stop seeing him, I don’t want to become even more of a recluse, but I know how my mind works and I know that it’ll just be too frightening to visit him, so I’ll make up excuses and stop visiting until I’m just no longer thought about. I can deal with people online – They see my writing first, so even if I’m writing about illness I’m able to present it in a way that I choose, and if they see me on webcam I’m able to manage my setup so that what they see is someone reclining in comfort, who can immediately switch it off and have privacy if anything medical happens, and can socialise for tiny amounts of time in-between bouts of morphine-induced confusion, so people don’t see them helpless, or anything less than droll and intelligent. It’s like a hyper-magnified version of most people’s online attempts to make themselves more appealing, but stretching out to the point that I just don’t socialise in the real world.


Going down this road – I know that people don’t genuinely only spend time with me because I’m the only person available or convenient, but it was hammered into me when I was quite young that I was basically an ersatz-person, only good enough to be around until the real interesting people turned up, only a good enough craftsperson to build stopgaps or things which were “good, for free”, only intelligent enough to ask for advice when all other resources had been exhausted. I, for obvious reasons, took refuge in my body. I might not be the brightest, or the nicest, or the most interesting, or the most talented, but I could be the fittest, the strongest, the tireless; The one able to carry the person with the broken leg back to the youth hostel, to walk the ten miles in the snow to get food and chaperone people home safely, that didn’t need to be good at conversations because people either started them with me by saying “Christ, you look fit”, and then tolerated me leeching the minor socialisation that I needed because I was a useful body to keep around, or didn’t come near me at all because of the nagging impression that I might just punch them. The one that could find joy in swimming against the tide in the north sea, because there was guaranteed to be nobody around to make them feel ashamed of themselves for not being a real person. And losing that physical presence, I feel like I’ve lost everything. Why would anyone want to talk to me, when I’ve done nothing of note for months and can barely hold up my end of a conversation? Why would anyone want to commission me to build something, when I can’t even guarantee that I’ll be able to buy in materials or move my hands? Why would anyone want to fuck me, when it’d be so much easier to fuck someone who was whole? I live in terror of everyone that I know realising that their lives would be simpler if they didn’t keep me around (Yes, even the people who are ill as well, and possibly even more so – Their lives are already complicated, why would they want to complicate them further?) and just quietly phasing me out of their affections.


Today, incidentally, is not being a good day.


A tiny spot of good news though; My MP has forwarded my complaint about RL to the Parliamentary and Health Service Ombudsman. And another link from SummoningEsther; A survey on healthcare, for people with rare chronic illnesses that have difficulty accessing treatment.


I think I’m going to go back to sleep. I’m in no state to work, and can’t deal with people right now.


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.

Do you ever, ever leave?

Back to CA for occupational therapy this morning. Was fitted up for overnight supports for my hands, which are basically thermoplastic cradles moulded to the shape of my hands and forearms, with straps to hold me into them.


I also ran into two of the C-Series; First C1 (Never actually my physio, but knows me from accompanying a friend to his appointments) who opined that she thought I was at CA more often than she was, and then saw Glados, who wondered what’d happened to my knee and why I was wearing a support on it – She had been my physio for quite some time, so this shouldn’t have been a mystery to her.


J, the occupational therapist, couldn’t fit me for a knee brace, and says that I have to go back to physio for that. Physio had alreadt said that was her business, not theirs. She seemed unshocked that I was caught in a swings-and-roundabouts situation.


I also now have the date set for the delivery of my perching stool and grip rails. 13th of June.


Oh, and I’m still carsick from the buses. This is getting ridiculous.

What on Earth are you doing, Percy?

Time has moved on. I’m a long way away from the worlds I lived in when my last few blogs died the death.

Nowadays, I’m ill. This is my blog that I’m going to post in so that my friends don’t have to put up with my constant whining about dealing with the NHS.

I have Joint Hypermobility Sydrome, still under investigation, and yesterday I got a letter of referral down to UCLH, under the care of Dr Kk, at the end of August. I’ve had 6 months of physio (Discharged in April) first with Mircalla (who was amazing) and then with GLADOS (Names obviously changed to faintly protect their identities; In real life they’re two of the C-Series, more on that later), one appointment with Dr W at rheumatolgy last August, an appointment with the pain team in April which was kind of amazing, really.

The day before that, I was in A+E, being manhandled by a consultant who firstly didn’t introduce himself, secondly thought that his two-second dekko at my legs (still under a blanket) gave a more accurate diagnosis of “Not a dislocated hip” than Dr S’s careful and through examination the day before which, in agreement with my previous physiotherapists, diagnosed “That’s a dislocated hip.” and thirdly who manhandled me with neither my consent or a chaperone; Damaging my hip even further.

This morning, I was at acupuncture (Provided by the NHS) which turned out to be the biggest waste of my time that’s ever been concieved. Two hours’ travelling, to get there for 9am, at which point I was treated to having to lie face-down with my head at a ninety degree angle and my shoulders hanging loose, whilst Physio D put eight tiny needles into my lower back (For funding reasons, she wasn’t allowed to treat my upper back pain). Ten minutes later, they were removed. Physio D then returned, and we agreed that acupuncture wasn’t appropriate for me – The travelling and the treatment were both too much stress for my joints to take (The problem being not the needles, but the lying very still). She then told me that she’d keep me on the register, but not make me any more appointments. Very much with the same nudge and wink as Dr L from the pain clinic had given me when prescribing me acupuncture in the first place (She too is a sceptic) that this was basically a way of making sure that the clinic didn’t end up being prescribed to people whom it’d really hurt.

This afternoon was a long, long letter and reasonably-long phone call to my MP – Of the opposite political orientation to me, but still apparently a nice bloke – in which he promised to sort out the problem with my GP’s practice (Or rather, the receptionists therein and the booking process; It’s always impossible to get an appointment).

And tomorrow, lo, I finally managed to get an appointment with a GP – not my GP, but a GP. It’s a start.

Friday is my second OT appointment – the first one set me up with wrist braces, and I think this one will get me measured up for knees and elbows.

I am in so much pain right now.


Current treatment status;

Physio: Discharged

Rheumatology: Discharged

Hypermobility Specialist: Referred

Occupational Therapy: Under care