Like a Stone

Chris Cornell died today.

 

Many many years ago, when I was a very mentally ill young man, I was sectioned for a week. That week of sectioning happened to coincide with Audioslave playing, and I had tickets to go with my partner. I could not go. I gave the ticket to his best friend, and the two of them went, and I stayed in the hospital.

 

At nearly 2am I got a phone call. Not a voice I recognised, or rather, not one that I recognised on the phone. A voice a bit knackered from singing a set, but still full of crackly good humour and encouragement.

 

My then-partner had got backstage, found Chris Cornell, and Chris Cornell’s response to “Actually, my partner was meant to be here, but he’s been sectioned” was to phone me and say hallo, to tell me to keep my chin up, trust the doctors, take my meds, and to reassure me that I was doing the right, responsible thing. Apparently he did that a lot – Just generally encouraged his fans to look out for their mental health.

 

A couple of years ago, Terry Pratchett died. He was an old, old man and it wasn’t a shock to anyone, not least to PTerry himself. I still get a bit misty-eyed reading The Shepherd’s Crown, but it’s with the acknowledgment of a life fully lived, that reached its close, and thus ended.

 

As far as anyone can tell at this time, Chris Cornell made his own way out. He was fifty two.

 

If Chris Cornell, who was grounded enough fourteen years ago to be able to chat to a suicidal stranger and make them feel like they could keep going, who had all the money and physical health and ability to access treatment that’s available in the world, who had all the biggest, loudest, most amazing distraction techniques available to him, who spoke up for years about what it was and how to face it head-on, was still killed by the terminal illness that is depression, what hope do the rest of us have?

 

I have more to write about. I’ll write later. Today I want Soundgarden and a nice wool blanket and to go back to yesterday and somehow persuade someone to ring Chris Cornell right after he finished playing his set.

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.

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.

 

 

The joy of duplicates

Somehow, last week managed to be a great week. An MOT pass for my bike, a theory test pass for me, a stunning red kite sighting at the swim (through that amazing glass roof, that floods the pool with daylight) and a bit of light work done in the garden – meaning that there are now pots of seedlings on every window sill.

And yet, this week, reality has reasserted itself. Having probably my worst episode of suicidal ideation since 2014, when I was sectioned. The physical pain isn’t helping.

I’m trying to spend a bit of everyday in the front garden with my next door neighbour, since that forces me to be out in the sunshine and be supervised. And, if nothing else, the dog likes it.

I also have my second last University deadline in week. The work is inane and I’m struggling to fill the word count but it’s distracting me from the bad thing.

In terms of my earlier scale, this is somewhere between a type III and a type IV on a background of very distressing and insistent type II.

I may have to codify a type IIb, which is “I am keenly, physically, aware of my pulse and where all of my arteries are, for some reason especially the ones in the top of my feet, my femoral, and my radials.” Since I’m getting that too.

I’m safe, just miserable and not sleeping properly. Haven’t got to sleep until gone five for the past few days, and still getting up at about ten. Not good for me, and feels like I have no control over my sleep cycle, which is distressing in its own right, especially since waking up means spending two to three hours lying completely still, semi-conscious and confused and in a lot of pain, before getting the mobility to take my morning medication.

And the pharmacy have been late with my medication again this month. Supposed to be due yesterday, they swear that they sent it off this morning, so I’ll have it by Friday. It’s fine, it’s not like I need my medication to function at all and have anything approaching a quality of life, right?

Es tun mir Weh.

So, i definitely seem to be shedding marbles at an alarming rate. Yesterday I ended up ran completely ragged – Numerous errands, dinnertime swim, housework – then had a horrible migraine that was just stopped in its tracks by Zomig (Which is basically magic, apart from that after taking it I’m completely useless and sleepy).

Then I had a horrendous anxiety attack just as I was going to sleep, and woke up this morning feeling like death. Physically sore everywhere, with that horrible floppy pain in my back that always comes before a really nasty episode of back pain, and suicidal.

So I did the most intelligent thing I could think of, and went for a swim.

Usually, this clears my head and makes me feel better and brighter. Instead, after about 400m I had to get out because I just couldn’t shake the horrible, sick feeling of not wanting to exist. The water was too syrupy, the other swimmers were annoying obstructions, even when they weren’t, and the thought of having to exchange a couple of words at the lane-ends, even to sort out swimming order, was just too much.

I got out, came home, collected the dog from my next-door-neighbour (who is used to my occassional headlong dives into wordless sorrow) and now I’m lying on the sofa and trying to work up the energy to watch Red Dwarf, or something, until Dearest gets back to keep an eye on me.

Warning signs

Reading the great list of papers linked by CSL yesterday, I found that there was only one consequence of long-term opiate use which was both true to me and insoluble.

“Feeling reliant on the medical profession to relieve pain, and as if the only way to relieve pain is pharmacological.”

So, I thought I’d approach that.

The paper suggests lifestyle changes, exercise, activity pacing and (bizarrely) the use of a TENS machine. It’ of course, doesn’t account for the fact that most long-term pain patients are actually very good at pacing, exercising when they can, using any non-medical remedies that they can, and generally trying anything – ANYTHING – that seems plausible to get them out of pain.

So, next time you have a sprained ankle, I want you to not take any pain relief for it – Not even an ibuprofen. Instead, I want you to go for a thirty mile walk. Maybe consider eating a salad, since “Lifestyle changes” is always code for “Lose weight”. Did it work? Would it have been easier to go for the thirty mile walk with a painkiller as well, so that you could concentrate on walking, rather than protecting the sore ankle in a way that would probably do long-term damage? Thought so.

Part of the problem is the definition of chronic pain. Some sources say “Any pain which has persisted for three months or more and has a debilitating effect”, and some say “Any pain which has persisted beyond the physical healing time of the tissue”. If you’re being treated by a doctor who uses the former definition, you will get all the morphine that you need, a tonne of physio, and generally buckets of sympathy. If you’re being treated by a doctor that uses the latter definition, they’ll assume that the pain is neuropathic, try to give you pregabalin, and assume that you’re insane and easily frightened.

My actual on-paper diagnosis is “Chronic pain on a background of joint hypermobility”. Some doctors read this as “Ehlers Danlos Syndrome, beware, fragile”. Other doctors read it as “Is insane and obsessed with being in pain, has slightly unusual joints which back up the delusion”.

Possibly fortunately, possibly unfortunately, my medical record is also full of instances of me presenting to doctors with dislocated hips, wrists, clavicles, shoulders and small joints, and MRIs showing my unstable spine with its herniated discs and trapped nerves. It shouldn’t be difficult to make it obvious that I have constant pain in most of my joints because I have constant injuries in most of my joints – I’ve not had a dislocated shoulder that’s hurt for three years, I’ve had a few hundred dislocated shoulders, and the pain and healing times have overlapped significantly. Thus, I take morphine and diclofenac every day, to keep the pain of the constant-healing-constant-breaking under control. I also take morphine and diazepam PRN for the worst fresh injuries. Just like anyone else would, if they had pain which was so severe that over the counter painkillers didn’t even touch it.

Just a rant. I’m not having a fantastic mental health day – Part of me is very prepared to walk into the river if my treatment is stopped on Monday, since that will be a more permanent solution than arguing with doctors again – so I’m getting it off my chest.

And, yes, I am reliant on the medical profession to relieve my pain. Because even with a sensible amount of exercise, a sensible amount of “just living with it”, a sensible amount of pacing my activities and a sensible amount of unconventional remedies, I still have episodes of pain, closely tied to fresh injuries, which need pain relief. Just like everyone else.

Palliation

I have just spent a good chunk of my money building a computer. It’s a gaming machine, so that I can play online games. It’s got a big screen, so I can use it to watch films and series. It’s a desktop machine, so I can put the screen up on a plinth and hold the keyboard without needing to sit up or carry the weight of a whole laptop.

It’s palliative care, for someone who can’t do ninety percent of the things they used to do.

When healthy, I don’t watch television. I barely even read. Computer games are something that I traditionally despise as a massive waste of time. Books are things for filling in long train journeys and relaxing on holiday. What I do when I’m healthy is create – Whether it be writing or sculpting or sewing or sketching designs for little machines or crocheting or trying to devise an origami leopard. If I’m not creating, I’m outdoors; Swimming, walking for dozens of miles a day, sneaking into abandoned buildings to photograph their innards, going to the gym or the pub and meeting new people and trying new things.

I can’t read, right now, and that’s bothering me. I tried to read the Aubreyad last year, and made it halfway through Post Captain before giving up because it was all too complicated. I’m struggling to read The Subtle Knife, which is a children’s book that I’ve read before.

I haven’t made anything at all since a waistcoat last March, and that was a simple project that should have taken half a day. About a year before that, I’d been making an item of clothing a week, and was getting markedly better at it. My sculpting has stalled, or possibly even gone backwards. I look at things I built in Japan, and can’t imagine having a quarter of that sense of movement and technical precision now.

I haven’t taken any photos since I went out photographing pigeons last spring, and I think that was the last time I left the house purely to do something fun as well. There is an official piece of paper saying that I can’t walk a hundred yards at a stretch, and it’s not even a lie. I can’t even remember why I used to enjoy talking to people, since there’s nothing to talk about anymore.

Swimming has turned into an addiction – I don’t often enjoy doing it, but I suffer if I miss it. I missed the 21.00-22.00 swim tonight, and I feel sick and guilty.

I’ve made exactly £120 at work this year. I used to make at least £300 a week before even breaking a sweat. On the social front, I no longer have the physical or mental stamina to help my friends when they need someone, and thus I feel that I have no right to be with them in the few good times.

I’ve built a little nest, with a screen full of passive entertainment, and cushions so I don’t even have to hold up my head, and a pile of cans of lemonade and a stack of packs of biscuits, so I don’t even have to go downstairs to eat. I’ve got a little cell where I can be kept in comfortable, mindless stasis.

I fucking hate this. I feel like I’ve given up, that EDS has won and I’m just trying to find ways to pass the time until I die. I literally wake up in the mornings and think “Oh, it’s half past eleven, so it’s only six hours until my partner comes home and makes me something to eat. Yeah, I can wait that long,” and then after having eaten it’s “Two episodes of this, and then I can go to sleep. Maybe have a spot of morphine so that I don’t keep waking up in the night.” and then rinse and repeat.

I don’t quite see the point. If you were told “You will be in pain for the rest of your life, and you will lose everything that you value about yourself” what would you do?