Abyssal Plains

So, this is probably the worst bout of suicidal ideation that I’ve had for a few years.

 

I’m at least still lucid in typing, even if when I tried to phone someone all I did was make weird noises and gibber.

 

I’m safe, for clarity (I’ve got the motive but not the method), just very very distressed and only managing a couple of minutes of lucidity at a time in between complete wailing misery.

 

This has taken about three hours to write, for context.

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Hundredaire

Right, a recap of a really shitty month. Dear reader, I petition you to remember whilst reading this whole post that at the best of times I feel like an unnatural mistake and a crime against nature.

 

First – The good; A long ride out to Selby in the cold, haring along the A63 on my beloved little 125, to meet the EN500; My prospective new bike. It’s good – A handsome old machine, with a high-revving parallel twin engine, a belt drive, and a very comfortable riding position. This one comes with a touring screen, a USB hookup, panniers, a tool roll (full of tools) and a sparkly custom paint job (In Kawasaki purplish-black pearl). Of course, I bought it on the spot. Riding back in the pitch black on twisty, unlit roads, watching the frost forming a halo around the moon was a tonic for the soul.

 

6th of December was my bike test – Failed, with technically zero faults, which I consider to be a sign that I was doing rather well. Only clocked 48kmph on the hazard avoidance – I needed to do it at 49kmph. Considering that this was in deep fog, with the ground green and slippy with moss and ice, I think that I did the sensible thing in taking the course more slowly than I would on a bright summer’s day, really. Next attempt, 17th of January.

 

After that, me, my instructor M, and his wife AM, all went out to Selby in the van to pick up the EN500. It’s now safely ensconced in the bike office, basically until I pass my test.

 

About three days after this, and two days before I was due to go home for Christmas, I got a migraine. Not just an ordinary, two-days-and-it’s-done migraine, but a full-on seven day nightmare. For the first four days, I couldn’t tolerate any light; Literally, even with my hands over my eyes, and the curtains shut, at night I was still screaming that it was too bright. By day three, I was still vomiting after so much as a sip of cordial, and it was only day six before I could stand up without getting so dizzy that I fell straight over again. This, by the way, is with Zomig, morphine, and a couple of over-the-counter anti-nausea pills. Without Zomig, I assume I’d have just killed myself.

 

And then yesterday was physio. The first driver picked me up at 10am, which was where the issues started. Before reaching the ringroad she had;

 

  • Nearly crashed twice at roundabouts, as she seemed to think that priority was to the LEFT, and had seriously jarred my back both times.
  • Decided to opine at length about how I should stop taking my meds and start taking turmeric instead
  • Told me about her haemorroids, describing them as “Pain so bad [I] could never understand it”
  • Explained at length about how everyone with a mental illness was just workshy and grifting.
  • Told me about three tragic cases of beautiful young people she’d taken to hospital who had awful conditions that she had to pray for.
  • Touched my leg four times.
  • Insisted on manhandling me and my bags, really hurting my knee in the process.

Upon reaching the motorway, she drove for most of the way on the hard shoulder, or in the crawler lane, and my attempts at sleeping for most of the journey were wrecked by her veering around in the lane – Not changing lanes suddenly, just being unable to follow the lane or maintain a steady speed.

 

We got to the hospital anyway, and she insisted on checking me in, giving a load of spurious requirements to the receptionist (No, I do not need my bags carrying, or a wheelchair, and if I did, I would ask for myself, ta), and then hugging me (I froze) as she left.

 

Physio itself went well – three new exercises, and just still not being patronised or blamed, which is an incredible victory in itself. Today was with Physio HH again, who is basically my main physio now, and was working on my hips and lower back.

 

The exercises (Since I’m keeping track here)

 

  1. Lie on back, knees bent about a foot apart, feet also about a foot apart. Close eyes. Keeping one leg upright, slowly lower the other leg out sideways, then pick it back up.
  2. Lie on side, ankles together,knees bent at about 90 degrees (as if in a chair) – Slowly pick up top knee, to about six inches off the bottom knee, then lower it back down.
  3. Sit on a balance ball, bouncing slightly (for core strength)
  4. Sit on a balance ball arching and curving back, whilst staying upright – This is also how we found that my left leg is shorter than my right, and I’ve got a functional scoliosis.

On the way out, I ran into Physio T, who seemed both really happy to see me, and also really worried that she’d been meant to see me that day, and had missed me. She was surprised that I’d not been in inpatient rehab in the month in the middle, since our last appointment, but also seems to think that I’ll do well once I’m in it.

 

That’s the other thing – Inpatient rehab; Aka, the fabled Stanmore Programme. There’s two versions of it, the hotel version and the hospital version, and for obvious reasons I’d rather do the hotel version. It’d just be conducted by physios, H was very certain to advise me that there’d be no nurses on-hand, thus no care shift – But then, in the real world, I don’t exactly have nurses on-hand all the time either.

 

The journey home was fine, even if I did have a two hour wait for patient transport, and only got back at 10pm. Nine hours of travelling, two hours of waiting, and an hour of physio. Seems like a great use of time.

 

The trouble is, well, my mental health. It’s not exactly great right now, it’s stable, but it’s stable at a low ebb – Nothing seems worth doing, up to and including things like “getting dressed” or “washing”, and stuff like putting on clothes more complicated than just bike leathers or surplus is so terrifying that I go into paroxysms of anxiety for days. Likewise, any kind of socialising – I’ve seen Best Friend a slack handful of times since we were on holiday, and I’m not really spending time with Dearest either. For my own good, I’m not doing Christmas now, but I almost wish that I could have some kind of in-person social interactions with people without finding it hateful and pointless. Not because I feel like I want to, but because I know that’s what “real people” do, and I really do suffer when I’m feeling more aware of persistently feeling like I’m not real, or not equivalent to a “proper person”. Failing repeated tests on a technicality, failing my degree, ending up in non-standard NHS treatment because my local trust don’t think I’m worth treating, being very socially isolated by a combination of awkwardness, reluctance and circumstance (today I rang up a client, for free, and chatted for an hour because I had nothing better to do), and having a job that relies on being able to be a very good liar/actor/cold-reader, atop a childhood of feeling like a mistake, an exception-to-a-rule, an outsider and an ersatz substitute for being with “real people” makes for a distinct sense of being not-a-real-person. It’s probably no coincidence that I’m happiest and feel most like myself when I’m entirely alone and hard to physically pick out from the next person; ie, either on my bike and in my leathers, or swimming and underwater.

 

It’s not exactly rocket science that I’m plagued with suicidal ideation at the minute either. I’m watching TV and generally numbing myself out with morphine and lacework, but it’s there in my head and I’m having a bit of a shitty time making it stay shut up. Ah well, not long to longest night, and then with any hope, I’ll be on the way up into Spring.

 

 

Hellscape

So, as the world has gone completely mad, I’ve not had time to talk about Stanmore.

 

First – it was a long day. Left here at nine, got home at 23.00 and didn’t get to eat in that time.

 

The physios were lovely (Physio H, hips, and Physio T, shoulders) and have started me off with a simple shoulder exercise; Lie on back with arm out sideways at shoulder height and forearm bent at ninety degrees. Rotate arm so that forearm travels from pointing towards your head to pointing towards feet, without using pecs or lats – The consensus is that I have basically no stabilising muscles in my rotator cuff, and my pecs and lats and other shoulder muscles (all frankly huge) are doing the work. As H put it “You’re lifting your arm, and activating a muscle that’s meant to pull the arm downwards. That means that the ‘arm’ that you’re lifting weighs probably about twice as much as your real arm”.

 

H opened the session with talking about swimming, and really wants to focus on getting that fitness to carry across to landlocked exercise as well. Like, serious emphasis on doing dryside training in between swimming sessions and using that to get me back up to strength. T, having a good close-read of my actual shoulders and back (Actually looking at and touching, not just vaguely gesturing! She reminds me of Physio C, my benchmark against which all other physios are compared) agreed with Dr Hd from the last Stanmore consultation that I have the muscle pattern of a serious competitive swimmer, right down to slightly shifted and split insertions and heads from a land mammal. She also made me blush by grabbing a handful of lat and going “ooh that’s just lovely to see isn’t it H? Real muscles, and all easy to get at, nothing in the way…” Very much in a professional tone, as one would evaluate carcase quality in beef cattle, but I am easily flattered.

 

The bad news – They think that I would benefit from inpatient, even if I do just stick my headphones on, or nip off to the pool for a session during the basic or counterproductive stuff. I worry that given a torrent of lies-to-children level information about pacing or prognosis, I’d cause disruption. not even deliberately, just by asking questions.

 

Anyway, step one is to return for more outpatient on the 15th of December, nine days after my bike test. Oh, did I mention we have no central heating, and haven’t had for… Over a month now. Ow. And it’s snowing.

 

Ah well, off for that swim. Got to keep on impressing the physios.

Rasputin

Time is passing.

 

Well, in two days I’ve got Stanmore, again, which I’m trying to look forward to. Going to try to do it in one day again, and to try to get as much out of the single appointment as possible – If there is a second appointment, I probably won’t be able to afford to get to it, even with the disabled person’s railcard.

 

Just failed another Mod 1, so am about to take on the eighth attempt in December.

 

The kitchen ceiling is dripping in three places, and the bedroom wall has filled up with black mould because the outside downpipe has broken. Heating repair is coming on Monday, gutter repair was supposed to be today, but I’ve heard nothing yet.

 

I had to fill in a reapplication for PIP, which arrived on the 3rd of October and was due in for the 3rd of November. I got it sorted eventually, but it took me ages and again there’s something cripplingly embarrassing about having your best friend and their Mum both doing a close-reading of exactly how you wash your hair and feed yourself and wipe your arse. Was frankly mortifying to realise how antisocial I am now; How much I don’t like to see, or talk to new people, and how much it’s getting worse. It wasn’t that long ago, in lifetime terms, that I used to willingly go to societies, and parties, and to find value in meeting new, interesting people. My attempts at such this year turned pretty quickly into realising “I like the swimming, but I wish there were no other people” or “I like riding, but I wish I was the only person at this biker cafe” and, well, I’m not sure if that’s mental illness or just utter disillusionment with all other people. Anyway, it’s been coming on for a few years, but now other than Dearest and Best Friend, I’m a complete hermit, and even seeing them is a little exhausting.

 

In good news though: I’ve been swimming a couple of times, I went to Harrogate and got myself a nice lambswool jumper and a load of buttons, and my lacemaking is getting on a bit.

 

All I really want right now is to be out on my bike, or to be curled up in the warm with someone lovely, or just in general for it to be not this week at all.

Cold Fear of Autumn

You may note I’ve not been posting much this year. That’s because my usual reprieve between dips of seasonal badness didn’t happen. And now it seems to be getting worse again.

 

I’ve not had this kind of seriously long-term acute-low since my teens and early twenties (where admittedly I was stuck in an acute low from 1993-2007) and the worst long crash since then was 2009-2010, where I was off on the sick for months on end for depression alone. But this one has been getting slowly worse since about Oct 2014, and this is the first year with no energy boost in Spring-Summer at all in that period.

 

I am not looking forward to this winter.

 

I am also not looking forward to going to Stanmore on the 3rd of November at 2pm for physio, since I don’t have the money to do it comfortably, so I’m going to be likely to be doing a round-trip to London in a single day, on an ailing 125. I don’t even feel like I have any hope to gain from being treated, since so far nothing has worked much at all other than giving me morphine and hard exercise, and I don’t feel like I have the strength to phone Stanmore and tell them that I can’t make it – I can’t even afford it – and that I’m very sorry for having wasted their time. I’d not even been expecting the Stanmore invitation – I thought I was going to have services provided at home. But this will be the best physios in the country. And thus I’m conflicted.

 

A Day In the Life – Höstdagjämning

Happy ȝevelengðhe!

 

03.00 – Wake up with dislocated shoulder and hand on left hand side, take half an hour to take morphine, try to whisk circulation back into it.

03.45 – Begin to fall back to sleep

08.30 – Woken up by alarm, fail to wake up, but take morning medication (10mg slow-release morphine, 75mg slow-release diclofenac.

09.30 – Woken up by alarm, fail to wake up. In a lot of unspecified pain that makes me very comnfused

10.15 – Wake up, back pain begins, start screaming at nobody.

10.23 – Make it as far as the quick-release morphine. Take, dislocating wrist in process. Fall back to sleep without relocating.

11.08 – Wake up twisted into an ouroboros, or a moebius strip, or both. Wrist still fucked, back even worst.

11.30 – Right shoulder luxates and doesn’t go back. Remains out for the rest of the day, getting intermittently more painful.

12.00 – Take laxative. The next couple of hours are censored for graphic depiction of faecal disimpaction. Luxate several ribs and pelvis in process.

14.00 – Return to recording. Sore head. Mystery sublux in foot which doesn’t go away.

[forgot to record a few hours because sore head turned into a mini-migraine]

17.32 – Spasms in right shoulder start, after making a pot noodle. Forget to eat pot nodle.

17.33 – Right wrist luxates. Reset by mechanical force.

17.51 – Back pain back up to a 9. Lie very very still. Possibly sleep.

19.15 – Get up with resounding CLONK of vertebrae.

20.46 – go to work, taking morphine and two glasses of port in the process. (All times now approximate)

20.50 – Luxate right hip whilst working. Reduce.

20.55 – Luxate left wrist and thumb whilst working. Reset.

21.00 – Luxate left shoulder, leaving me with zero shoulders. Reset badly.

21.30 – Finish work, wash up. Hands cramp and freeze in the water, multiple finger and wrist luxations.

21.41 -Left patella luxates.

22.57 – Shoulder pain on the right gets so bad that the chest goes into spasm, taking the clavicle with it. Debate diazepam, but decide against it because it’s horrible.

23.15 – Mysterious gut pain. Realise that I’ve not eaten all day, but have had no appetite anyway. Decide on orange juice.

Thin Privilege

One thing that really annoys me at the moment is that the HAES movement has managed to effectively elide the difference between “slim” and “skinny”. It’s generally best espoused by the phrase; “Thin shaming is nasty comments, fat shaming is structural oppression”.

 

And it’s bullshit. It’s gaslighting of the absolute worst order.

 

I am a thin person. I don’t like posting photos of myself, but if you dig through this blog long enough, you’ll see photos of me. I’ve been thin for my whole life, a product of being an extremely premature birth, being malnourished to some degree for much of my childhood due to poverty, and due to Ehlers-Danlos which, amongst other things, makes my digestive tract inefficient and kills my appetite and makes food about as likely to come up as it is to pass through.

 

It started in early childhood, where I didn’t put on weight like other children, so there was a constant stream of social workers to the house and the constant assumptions and whispers that I was being abused. By about 6, other children had picked up on it, and I was “skinnyface” – Either getting food smeared on all of my belongings, or having my pack-up stolen and thrown over the school fence because I “didn’t need to eat, [I am] a skeleton”.

 

It continued at secondary school – New city, new people; Single-sex and selective. The pupils immediately picked out that I and two others were unusually thin, so the rumours spread immediately that we all had eating disorders, and we were shunned to varying degrees for that. Again, eating at school was fraught; Having a bar of chocolate would always be accompanied by sicking-sounds from everyone around me (Because of the assumption that I was bulimic), and eating in the dining hall was a nightmare since other students would pour vinegar on my food to “Help my diet!”

 

It only took a couple of months for the staff to join in as well – At PHSE, I was the one in my class who was always held up as an example of “Someone who could use feeding up” or “Someone who OBVIOUSLY put wanting to diet ahead of how they looked” or “Someone who probably has an eating disorder”. The geography teacher found it hilarious that other students had scribbled my name under a picture of an emaciated child in a famine. The history teacher, a few years later, tried to stifle her laughter when the same thing happened with a concentration camp photograph. It didn’t take much to convince the teachers that I was a cruel bully who paraded my thinness in front of the other students to mock them, so they pretty much without exception joined in in pointing out how ugly, freakish and skeletal I looked. Did I mention how confusing it is to always be singled out in lessons about drug use and eating disorders, with the assumption that you’re a heavy drug user, and that you have an eating disorder, when you’re neither? Academically, despite getting good marks and being generally very interested in learning (I still am interested in learning, and improving my skills at various things) I was assume to be stupid and un-teachable and to have no interests other than being thin.

 

Thankfully, sports was a small reprieve – Within my own team, outside of school, I was known to be a fast swimmer and a hard worker, but every new coach had to be persuaded that I wasn’t just there by accident and wasn’t doping. And, honestly, in the changing rooms there were still rude comments and snide remarks, but at least nobody spat in my food.

 

Obviously, in all of this time I’d never had clothes that fit, and going to school in jumpers that hung off me like sacks and tights that wrinkled around my calves made me unfashionable as well. It didn’t matter, my uniform got holes cut in it pretty much every other month by mysterious perpetrators “who were never caught”. One of the ringleaders in my class said that I should be flattered because everyone wanted to see my lovely thin whore body, and everyone laughed.

 

At around 11 or 12, the physical pain started – All of my joints going to pieces. I went to the school nurse first. Her verdict was simple; I needed to stop obsessing over my appearance and eat more. I was stupid, vain, shallow and the literal worst kind of person. I braved going to the GP. He told me that eating a bit more, since “Boys like curves” would help. I still didn’t have an eating disorder, I was still trying my best to put on weight at every turn, to stop the constant taunting and assumptions that I was a bad person. Despite continuing to try to see doctors regularly for both my phsyical health and mental health, it took until I was 26 to be diagnosed with any physical pain-causing problem, and given any pain relief at all, by which point I had basically lost the ability to walk. Because everyone had decided that my only problem was being too thin, go and eat a sandwich.

 

At 16, I started looking for work, and was immediately turned down. Employer after employer told me that, well, a skinny fragile thing like me could never do stand-up work. Bar work? Cashiering? Shelf stacking? All needed someone who looked less “snappable”. This is despite the fact that at the time I was a fairly high-level athlete and hillwalker. No amount of my protestations that really, lifting a tin of beans was not beyond me, would get through to people. At 22, finally, I got a job that I loved, building drystone walls, and was very happy with it. After that, I had a few years of demanding physical work in a teaching lab. All stuff that, when I’d been seen in-person first, it’d been assumed that I couldn’t do. Both of these were jobs I’d got via telephone interviews. I’d always been turned down for non-physical jobs as well, because I “Wasn’t the image that our company wanted to project” – Too unhealthy, probably a drug user, a depressing reminder of poverty.

 

Have I mentioned the street attacks yet? There was a reason that I didn’t go to nightclubs or bars, or really socialise much, and still don’t. Firstly, tht it’s impossible to socialise when every time you go into the toilet, you get someone trying to look over the door because “The famine victim went in there, what do they look like with their knickers down?” or someone tries to rip your hair out to “make you look more holocaust since you’re already halfway there” (By the way, my hair is as thin as it is largely because of scarring in the follicles from multiple people per year thinking that they were the first to make that joke). The thing that stopped me was someone slashing me with a knife, to “See my ribs”. It needed stitches. The police officer that I’d reported it to said “Well, you ARE very thin… They were just curious” Buying food in restuarants or cafes was basically impossible – If I ordered something “too fatty” it’d get spat in or turn up with hair in it, or a cruel note. If I ordered something “too healthy” (which was often the verdict thanks to my cow’s milk allergy) I’d find it spiked with butter or milk that’d make me ill for days.

 

And as for clothing – Yeah, I’ve never been able to just buy clothing that fits. As I sit here, I’m wearing a pair of oversize army surplus cotton trousers which tie with a drawstring, and a silk shirt made for me by my best friend. I’ve never seen someone like me on an advertising board, or a catwalk, or in a TV show (Other than, once in a while, as a heroin addict or a criminal). Clothes are not cut to fit someone with a huge square ribcage and hollow shoulders and a recessed breastbone, and pressure sores on their scapulas and hips and arse and knees from sitting  down with too little padding.

 

In case it’s not obvious – This was not just treatment inflicted by one person. This was not just treatment inflicted by one toxic subculture in one city, or one institiution, or one profession. This is everywhere that I’ve lived, in three countries, five schools, a dozen places of work, everywhere that I’ve ever tried to socialise. I eventually gave up on even the naturist swim – A place where people are famously accepting – because I got too many comments on my grotesque body, and too many people assumed that it meant there was something grotesque about my personality as well. This was, well, structural, systemic; in education, in society, in healthcare, in the workplace and in the media.

 

So the constant gaslighting that “The worst that happens with skinny shaming is being told to eat a sandwich” can frankly go to hell.