Absinthe, laudanum, and embroidery.

Happy Walpurgisnacht everyone, hope that you’ve got fire and greenery and goodness.

That this has taken me three days to get around to probably says something about the, erm, curative powers of morphine.

On Monday, I woke up with my back in such a mess that I made Dearest late for work, because I couldn’t be left alone. When trying to explain pain, I usually use a scale where a twisted ankle that you can’t walk on is “one”, and an infected abscess that’s been festering for six months and pushed the tooth out of the jaw at a right-angle is “ten”. This was about a nine, which is alarming to wake up to, and even more alarming when it doesn’t start to recede upon moving. Shifting my weight didn’t help it, having my back massaged didn’t help it, standing up and trying to walk resulted in red and silver stars in front of my eyes, then fainting. Something was badly wrong. Unpon getting back to bed I immediately took my morning slow-release morphine, then a second dose of slow-release, then twenty minutes later a double of Oramorph. Forty milligrams. This is not a lot, over the course of a day, but this is a metric fuck-tonne over the course of twenty minutes. That was at about 8am. I settled in with an audiobook of The Master And Margarita, my trusty mala (Used more like a komboloi than like a rosary) and waited for hell to stop.

Hell stopped, I think, by about ten. My eyelids got heavy, and I struggled to stay awake and focussed on the story (Pontius Pilate was determining whether Bar-Rabban or Ha-Nosri would be executed, whilst struggling against his damned migraines), but that didn’t matter because everything was soft and pleasant and every time I let myself drift my mind filled in the story with a mixture of what I remembered from the book and brightly-coloured hallucinogenic nonsense, which I enjoyed immensely. The sheets (Cotton satin, decotrated with silk-thread satinstitch) were a fascinating collection of temperatures and textures, and them shifting on my skin as I breathed became the overriding sensation which drowned out the pain. The twitching slowed, then faded out to nothing, and I was able to exist without wishing for a swift and mallety death.

At about one in the afternoon I realised that time had passed (Woland and his retinue were on stage at the Variety, silk dresses were fluttering, severed heads were flying through the air) and that I had an absolutely overwhelming urge to be sick – You’ll understand that, up to this point, I hadn’t moved a muscle all day; Not to eat, not to piss, not to attend to my damaged limbs. I sat up, cold sweat running down my face, epiglottis straining like a squid on a harpoon. Sitting up made me queasy. Lying down made me queasy. Moving from position to position felt like being on the North Sea ferry. Having my eyes open made matters worse. The sound of the dog breathing made it worse. Being wrapped in a blanket made it worse, as did being cold. I had a bucket (Thoughtfully prepared for such occasions) and I managed to get my face above it. As I moved, I realised that my hips were dislocated, as were my shoulders, and I was supporting myself on things which were ill-equipped to handle my full weight. My eyes streamed, my mouth filled with water brash, and I sat there for a terrible twenty minutes, waiting for my pathetically paralysed stomach to expel its contents upwards. Feeling effectively neat hydrochloric acid slowly pumping up your oesophagus like bubbles in a lava lamp, as you desperately shake your head upside down in an attempt to get it to hurry up, is not something that I’d wish on anyone.

Eventually, the vile stuff was out (pH 1.5 according to my UI paper) and I felt a little better. I lay back down, trying to regain the fuzzy lack-of-being meditative state I had beforehand, but instead just began to fall asleep. I forced myself to wake up for long enough to reshuffle my lax joints – Completely painless due to all the morphine still in my system, but also incredibly difficult due to lack of coordination caused by all the morphine still in my system – then switched off the audiobook and fell asleep.

By the time I awoke it was just after five. I felt, broadly speaking, human again. Well-disposed to everyone around me. Not in tremendous pain. Able to eat some oats and have some tea. A bit sore in the head, but nothing beyond an average headache.

The next morning, my kidneys felt as if I’d spent the previous day fighting bareknuckle with someone faster and stronger than me. As did my eyes, which were basically a mess of bruises. As, again, did my head.

But, christ, it was still better than that back pain.


This is a bit outside of my usual remit, but I’m going to post it anyway.

You know the meme of “Ironic misandry”? It’s very clever. Basically, you write a tweet/post/status that says “Men are ugly and smell bad” or “Men are stupid” or “Men are fucking disgusting” or “I wish that all men would just vanish, forever” or “Kill all men” and then nobody is allowed to criticise you because it’s ironic and it’s just a marginalised person letting off steam. Any complaints about the post are responded to with “Lol delicious male tears” or “Fragile baby male ego”, and the complainers are judged as hating women and being basically everything thats wrong with society.

That’s exactly how it works, by the way. I’m disabled, so every now and then I can just smack an ablebodied person at-random in the legs with my cane, and nobody is allowed to tell me that I’m being a prick. Enough ablebodied people have hurt me over the years, so I’m allowed to just scream obscenities at them en masse because, hey, they must all be guilty, right?

You make an ironic misandry post which says “Men are worthless”, and nowhere does it actually say that you don’t really believe it, or that it’s just a joke. The meme of “men are worthless” is often a running theme through the blog/feed/timeline of the person saying it, so it’s very easy to believe that the person saying it really believes it. Justifications are usually either “I’m saying it because I’ve been hurt by so many men and thus fear them!” or “I’m only joking, nobody really hates all men, it’s just an expression of frustration at the patriarchy. Nothing to do with you.”

But, no. If I said “Dogs are worthless” you could reasonably assume that I don’t like dogs, rather than that I was annoyed by the social convention of dog ownership. If I said “Neckties are worthless” you could reasonably assume that I really disliked ties, rather than that I was just bothered by the need to wear them on formal occassions. Shouting “Men are gross!” and then retreating back to “I didn’t mean it like that!” when you’re pulled up for it is nothing but intellectual dishonesty – Either be clear in the first place (these posts are so rote that they obviously didn’t just happen to phrase it badly, they picked their words) or don’t post at all.

So why does it bother me so much?

They put up their post that says “Men are worthless”, and lean back in their chair, satisfied. “Ah,” they say “I have made myself feel less trapped by the patriarchy for a couple of seconds, and I haven’t really hurt anyone, because under patriarchy men are not oppressed therefore cannot structurally be harmed by my writing”.

The post is read by men.

By disabled men, who already know that they’re worthless because they’re not physically strong, or cant hold down a job, or don’t have families of their own.

By mentally ill men, who already know that they’re worthless because they cry over every little thing, or can’t be the pillar of emotional support that they’re meant to be.

By trans men, who already know that they’re worthless because they’re about as far from the “ideal man” as it’s possible to get.

By gender-non-conforming men, who already know that they’re worthless because they have to hide their non-conformity to varying degrees.

By non-white men, who already know that they’re worthless because they’re attacked by racists all the time.

By poor men, who already know that they’re worthless because worth in our society is basically always measured in pounds sterling.

By men with low self-esteem, who already know that they’re worthless because that’s basically how low self-esteem works.

“Ah!” you say “But none of these people are attacked for being men! They’re attacked for being disabled or non-white or trans, et cetera, so it’s fine.”

A thought experiment: You’re blonde, and you’ve never been bullied for being blonde. Its always been thought of as either neutral or vaguely desireable. You are, however, gay, and have been bullied for it for your entire life. Being blonde, though, that’s something that you’re happy and comfortable with and you never really have to think about it, even though the rest of your life is a bit of a minefield. You come home one day to find that your entire internet community – The community that’s supposed to be progressive and accepting, not the community of shock-jocks and 1970s bricklayers – is making blonde jokes. Constant blonde jokes. Blondes are stupid, blondes are gullible, blondes are morally-bankrupt golddiggers, blondes are basically no better than animals. Do you say “Oh well, at least they’re not calling me a fag!” or is it just one more bit of upsetting pressure in a life that’s already basically full of it? Even if the reasoning was “Oh well, blondes never have to buy hair bleach, so we’re just venting frustration at that!” would you not feel a little bit irritated and probably want to ask them to stop it?

In saying “Don’t get offended by it, you’re not oppressed for being men, you’re oppressed for being disabled” you’re basically saying “Don’t identify with the fact that you’re a man”. Which, well, is kind of what the patriarchy says to “failed men” as well. Crippled? Ha, forget about being thought of as male, you’re now a sexless lump in a wheelchair. Mentally ill? Isn’t that kind of effeminate, bro? Trans? You’re a woman really. I could go on.

For men that are struggling to cling onto their masculinity – Which is an important part of a lot of men’s identities, just like how being a woman is an important part of a lot of women’s identities – being repeatedly told by the social stratum that they’re part of that men are disgusting and pointless and horrible and should all die is really damaging.

You may note that I keep saying “Their social circle” or “The demographic that they’re part of”, and that’s because I keep wanting to talk about the kinds of people that make blanket statements about gender. We all know that “I hate all women” and “All women are manipulative and evil” and things like that are really common memes, and they’ve had far-reaching effects in society for a really long time. But things are getting better – It’s now widely held that saying that sort of thing is a sign of being a complete swine, and people end up taking sensitivity and diversity courses if they get caught doing it too often, and just generally losing friends. It’s a mark of being retrograde and, in most circles, of being bigoted.

The problem is that ironic misandry is largely practised by well-educated, young, often safely middle-class, often white feminists. People who claim to be all about being progressive, about moving society forwards, about making the world a better place just by being in it. These are people who raelly dominate in online feminist discourse. And thus when anyone wants to spend time in feminist circles, they have to contend with a constant barrage of (ironic!) hate, negativity and bigotry that they’re not allowed to respond to (Because male tears are just delicious, amirite?).

So feminist discourse is being overran by people who, for basically their own amusement, are making people suffer for no good reason, and are making feminism inaccessible to any man that doesn’t live up to the (very old, very patriarchal) stereotype of “Ha, men don’t have insecurities, they can just shrug it off”.

And no, that’s not “Only an ally with conditions, therefore not an ally”. That’s just common-sense “If someone is trying to understand your point, and supports your movement, don’t deliberately make it more difficult for them to join your movement.”

I’m pissed off, I’m hurt, I’ve spent most of the day in a morphine fog and throwing up into a saucepan since I woke up at about a 9 on the pain scale, and I’m sick of seeing basic bigotry being thought of as sparkly funtimes for everyone that matters. Because that’s basically saying that I, and people like me, don’t matter.

I’ve probably got more to say, feel free to argue the toss in the comments.

Walpurgis sauntered in

Very short update today, just that I got the phonecall from the fracture clinic – No bony injury at all on my x-rays, so no fracture clinic appointment, so time for more physio.

I pointed out that I already have more physio on the 6th, but apparently this is *more* more physio.

I genuinely cannot fucking deal with any more physio. It’s exhausting, it’s a complete shitshow as to whether I get someone who wants to help or someone who wants to make me miserable and guilty, and courses are never long enough to do any real good. Plus, since there’s no specialist EDS physios nearby anymore, I get given exercises that I can’t physically do, over and over again. And then I get called either lazy for not doing them, or irresponsible for doing them and hurting myself.

I’m also seeing a GP about my resounding self-hatred on the same day, so that should be fun.

Today I was supposed to be out with Best Friend, shopping for shirts and things. I decided that going clothes shopping alongside someone who generally has a much smoother relationship with his appearance than I do to mine was probably going to just upset me, so I went for a quick lurk around the necropolis instead. Briefly perked up for the two hours that I was out there – Sitting under the cherry-blossom trees with warm stone under your arse and the sound of pigeons echoing int he old funeral chapel will cheer anyone up – but I’m now home again and sore and going back to going out of my mind. Last night was a bit of a dark night of the soul, and I think it’s going to be a while before I pick back up from it.

The Devil came to Moscow

Yesterday turned into an absolute nightmare.

I’d dislocated my right shoulder a couple of days previously, and it was getting more and more painful, wobbling in and out of socket, generally being a nightmare. It felt as if there was a crowbar shoved under my scapula, wedged right through my ribcage into my sternum. I couldn’t lift the arm without tremendous pain, I’d been at maximum morphine and diazepam for half of the week, and I was alternating between sleeping all day, and staring at the ceiling and being unable to sleep when it was appropriate.

So, by Friday, I was enough of a wreck that I phoned NHS Direct.

I cen’t remember the first responder, but I eventually got a call through from a paramedic. She was fantastic – She also lives in my village, and has two first-degree relatives with EDS – and she immediately sent a taxi to take me to accident and emergency.

On one hand, this was fantastic. I got there within ten minutes. On the other, this was terrible, since I ended up at LGI, which has what I can only describe as a clusterfuck of an A+E.

Upon first arriving though, things seemed like they were going to be fine. I was immediately put on a trolley by a ridiculously flirty nurse (In an actual nurses outfit, short skirt and all) and taken into a booth. Her and a second nurse quickly checked over what had happened, noted down my EDS, and sent me off to x-ray.

I got two x-rays, then was wheeled off to a side-room, and told that it wouldn’t be long before they got back to me with my results.

I sat there for four hours. No call button. No pain relief. Nobody checking on me. I alternated between drifting in and out of conciousness, crying in pain, and  After four hours, my attempts at shouting to anyone who passed in the corridor were finally heard (By a random passer-by, not a member of staff) and she went to find someone. After a while, a different nurse came by and said “What’s your name?” and after I replied she vanished again immediately, even as I was trying to ask what was happening. I saw nobody for another hour.

By the time another nurse came by, an hour later, I was complettely insensate with pain.

“Good news” she said “It’s not dislocated, but we just need to send you back for one more x-ray to make sure. Have you had any pain relief?”

I replied that I’d had 14mg of morphine, before coming into hospital. At this point, she snapped;


And I quickly had to reassure her that I wasn’t going to ask for any.

A third x-ray was taken, I was told to expect a call from the fracture clinic, and I got to go home. More in pain, more exhausted, and no closer to having my shoulder feeling better than before I went.

It’s a day later. My shoulder is still wrecked.

Unrelatedly, but still upsettingly, I’ve been really miserable in my body lately. Not because it’s in so much pain, but because it’s just wrong. I usually don’t feel much dysphoria, but I’ve been getting more uncomfortable in my own skin pretty steadily for the last year, so it might be time to talk to a doctor. Augh. Possibly understandably I’m wary of the idea of having my relationship with my body and my social presentation picked over by a stranger when I don’t even much like to discuss it with my friends, but it feels like it might be the best course of action now. I’ve whinged before, I won’t again.

Sun and stars to me.

Monday was my first swim in a month. Literally a month. 28 whole days.

I got in the water with a plan in my head;

Don’t count your distance, don’t set the lap clock running when you get in. Swim until you feel well-stretched and notably tired – But not so tired that you can’t get dressed. At the first sign of pain, lack of enthusiasm, or coldness, stop swimming.

This is something that I learnt from bodybuilding – As much as people talk about “Oh, you’ll want to train once you get there, you just have to push through the laziness” there is something distinct from laziness that sometimes just makes training impossible, and it’s a completely valid reason to not train. There’s the feeling, when you’re training sometimes, of just distinct unease, of complete loss of motivation. Of “I don’t want to do this, I can’t go another inch, I don’t even want to change into my fastskin, never mind swim in it” – It’s not always accompanied by pain, or even by tiredness, it’s just a sort of cold, grey slurry that creeps up and smothers your heart, empties your lungs, and makes so much as shifting your gaze from the lap timer to the lane end into a painful slog. It’s like the worst excess of depression, but instead of being directed at everything, it’s purely directed at physical exertion.

Listen to it. It’s not laziness, it’s not cowardice, it’s the Body telling you that it’s had enough for now, and that you need to take it home and mollycoddle it. Put it in bed, with clean sheets, a cup of cocoa, an audiobook, and probably a large glass of brandy. It’s done enough. If more people were honest about “I don’t want to” as opposed to “I can’t”, and if more people understood that this kind of “My whole body has stopped responding” was a definite “I can’t”, we’d probably have a healthier sporting culture. Less PE teachers barking at over-worked bairns that should probably have sat down and had a protein bar half an hour ago. Less amateur clubs where the line between “committed” and “casual” is viewed as being about moral goodness (Casually joining in on a game of cricket, or a short jog, is a good thing. You’re not a bad person for only going once a week, you’re just doing a thing you enjoy at the level you enjoy it at). Less mistrust between athletes and non-athletes (Self-flagellating body-shamers and feckless wastes of good myosin, respectively).

My be-gentler-with-myself-at-training plan worked. I swam for probably about half an hour, and felt better afterwards than when I got in. I did the same again today, at the midday session. Both in the medium lane, both times swimming steadily, making sure not to try keeping pace with anyone else.

Sadly, the day in the middle was a pain day – Dislocated hip on Monday evening which kept me up all night, then day-sleeping for much of Tuesday, on a cocktail of diazepam, morphine and gin and tonic. But I recovered, quickly enough.

I’ve said before that I’m basically a dugong in a malfunctioning human-suit, which a friend corrected to being more like a selkie (Still unconvincingly human on land, but in a more appealing way). The thing with selkies is that they always want to get back in the water, and honestly that had been my problem for a while – For most of last year, swimming was an addiction rather than a hobby; If I swam until I couldn’t walk, I didn’t feel good, I just felt normal. If I missed a day, I felt horrendous, and hastily rearranged my life to try to fit in another session. It felt a lot like when I was in serious training as a teenager – Where the only options were either “Overwirked to the point of near-death” or “Punishing myself for not working hard enough”.

Hopefully this year I’ll do better. Short swims. Not looking at the lap timer. Not counting my lengths. Just doing what I feel like.

Shine brightly

Well, after all that worry, today went fine.

The doctor I saw (Dr RS) was happy to increase my diclofenac (70 tablets instead of 56, to cover for pharmacy fuckups), to very slightly increase my diazepam (To eight pills a month instead of six), decrease my laxido (30 instead of 120), put my suppositories on my repeat prescription for about the 90th time, and, best of all, to not push to decrease or remove my MST. She had the usual caution – She said she “didn’t like” diazepam, but my point that I didn’t like it either, it was just better than an A+E admission, was enough to put that to rest, and my bluntly asking “Why?” when she said that Dr Rpm had thought it was a good idea to take me off MST, with the corollary of “I’m not in pain anymore. I really like not being in pain.” has set her mind at rest that I’m not in some kind of terrible opiate abuse spiral.

Thankfully, she’s basically just a really nice person, and I’m glad that I got her today rather than someone more idealogically driven.

It then took literally a dozen trips back and forth to the pharmacy to get my prescriptions sorted out, but now I have them all.

Utter disaster, forestalled for another month.

Interestingly, my Oramorph this time came in an unlabelled bottle, without a child-lock cap. Probably actually useful, so that I can open the bottle without needing help.

Tiny glasses

Friday was outpatient surgery, at WDH, a new hospital that I’d not encountered before, but that I’d heard absolute horror stories about from other people – That it was filthy, that it was inaccessible, that it was basically a nightmare, so I wasn’t looking forward to it.

After a lovely drive (Sunshine, spring flowers, lambs, VOTE LABOUR signs everywhere) me and Dearest arrived at WDH to find that, other than being a bit of a maze, it was really rather lovely.

Moved into a small ward, and was the only person given a bed rather than a chair (They had documentation in advance saying that I had prior health conditions). I was assigned a nurse, who did all of my paperwork for me, and I was bumped forwards in the rotation to get me home as quickly as possible, since I was in obvious pain already (Having not taken my morphine in the morning, due to forgetting it at 7am with my cocoa, then not being able to have anything to wash it down with later, and not being sure if I could take it anyway).

We arrived at 12.00, and by 12.30 the registrar had been around to get me to sign a consent form, by 13.00 I had spoken to the anaesthetist, who had told me to take my morphine, and had reassured me that she’d put some more in my general anaesthetic to make sure that I was still comfortable when I came around, and then it was only a short wait, until 13.45, before I was asked by a second nurse to go down to the theatre. This was the only problem;

“How far is it?”

The nurse thought she was being helpful “Oh, not far, just down the corridor”

“Yes, but how lng is the corridor?”

“Not long, just around the corner.”

I started walking, and she told Dearest to go and wait in the waiting room. I insisted that he should go with me, in case I fell flat on my face. She, grudgingly, assented. It turned out to be a lot further than she’d insinuated (I had to drop to a squat three times) and every time I sat to wait, she said “Shall I get you a wheelchair?” and I asked “How far is it? Because maybe” and she said “Not far!”, and every time I believed her.

Eventually, she said “Oh, it’s just through these double doors, so (Dearest) can go back now!” and indicated a pair of doors very close by. Dearest, of course, said his goodbyes and started to walk back. it turned out that she meant another set of doors, another fifty yards away. So he had to come back, and help me through them.

Do not be evasive when talking about distances, really.

Anyway, I got onto the stretcher, was introduced to everyone (Nurse, other registrar, anaesthetist again) and was cannulated in one swoop – Straight to the back of the right hand, using a paediatric needle, like I’d mentioned in the ward. She was surprised that I didn’t mind watching it be done, but was fine with it. The registrar remarked that there was a lt of money in my tattooes, and I couldn’t help but grin. Then on went the oxygen mask, and in went the fentanyl, and after what felt like an eternity of lying still and blinking, I was under.

When I came around, the nurse was talking about UKIP (Broadly in favour) and her son thinking of travelling to Japan. I recommended a working holiday visa, did my best “Farage is an outright liar, don’t trust him as far as you can fling him” and then was wheeled back to the ward.

Time passed. I got toast with two types of jam, and wanted to go home. I stood up, and the blood ran down my leg like a tap. I lay back down, and complained. The nurse, without asking, flipped up my gown in front of the whole room and assessed it as “A normal amount of blood”. Slightly horrified at having my genitalia casually exposed to the entire room without even being asked if this was all right, I went to the toilet to clean up. The nurse hammered on the door, and insisted to see me. And just reconfirmed that it was a normal amount of blood.

Now, forgive me if I’m wrong, but the Mirena insertion procedure doesn’t actually involve any cutting – The coil goes in through the existing aperture of the cervix, and sits in the existing space in the womb. I have no idea why, two days later, I’m still bleeding.

Anyway, at his point the nurse got really huffy that I wanted to go home immediately, and tod me to stay for “Another few hours”. Then apparently realised that she couldn’t have it both ways (I couldn’t be both “fine” but also “needed to stay longer”) and finally let me go.

We were back home by about four.

Tomorrow, at 14.30, I have to argue to keep my medication. Wish me luck.

Moha, raga, dvesa.

I have phoned PALS, and they’ll get back to me (The main line is just an automated service).

I’ve realised that I need to get all my official cards in-hand today in order to have the ready by Monday, since nobody works over the weekend and I’m going to spend tomorrow either delirious with hunger whilst waiting for my anaesthetic, or dazed after it.

This morning, so far, has been shite. Woke up in so much pain that I had to have a wank in order to benefit from the brief pain-relief burst immediately after finishing, and then to use that minute of numbness to crawl to the other side of the bed to find my actual opiates. And then had to lie there for the ten minutes as the opiates took effect, feeling sick, twitching in pain, assessing the further damage that’d been done by the muscle contraction of orgasm, and having the uniquely awful sensation of knowing that every time I do this I further ingrain a Pavlovian unease with sex.

When you haven’t got the strength to move the five feet from one side of the bed to the other, and the memory-foam mattress feels like lying on rugby-ball sized lumps of basalt, and you can’t hear anything over your own pulse and for some reason the taste of blood and bile in your mouth is deafening as well… Well, there’s not much choice, really.

I want to swim. Actually, no, more honestly I want to go to the gym and work out until I can feel progress. I want to feel muscle fibres at their absolute limit of pain and stress. I want my legs to shake as I climb down from the weighted squat apparatus. I want to see bruises blossoming on my forearms as I delt row. I want to wonder if the tendons in my wrist will actually break the skin during a biceps curl. I want to need a long lie down on the floor after a session on the roman chair, as my back clicks and settles and feels better for once.

I can’t, of course. If I go to the gym, even on my crutches, even getting a taxi both ways, even if I’m obviously rehabilitating myself from injury, I’ll run the risk of someone pouncing on me with a “You’re not crippled enough!” and phoning the DWP, safe in the knowledge that they’ve Caught A Scrounger. Rather than that they’re taking away the one safe outlet for a cripple to keep their body in a broadly-functioning condition, and keep their mind along with it. I get that fear at swimming as well, but I feel like “I can swim – it’s gentle, see – I just can’t walk” is easy to understand, because swimming is culturally considered to be something that old people and pregnant women do. Nobody quite understands that a short gym session, with helpful bodybuilders on-hand, can be just as relaxing and refreshing and safe as a paddle in the baths.

Gym resolution, if I do go:

– No shoulder press, it always ends in clavicle dislocation.

– No static bike; I need those legs to go home on.

– Stick to chest press, biceps curl, triceps extension, delt row, roman chair, calf raise, thigh curl, weighted squat and possibly inclined situp.

– Do not plan to do this every day. Or even every two days. Once a week is enough for now.

Do I risk it?

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.

Creepy Green Light/We Will Bury You.

I am feeling juggernauty today. I am going to crush people under my hooves and hang their skins from my antlers as a warning to the rest. In the words of someone who was wrong, but had a way with words – “Нравится вам или нет, но история на нашей стороне. Мы вас похороним“.

So, I had my appointment with Dr Rpm yesterday via phone since I wasn’t walking well enough to get to the surgery.

I said that I’d taken the Imigran, twice, and that it did seem to work, sort of, or at least worked well enough to be better than having a full-blown migraine. I asked if it could be taken regularly, safely, and he said it could be. So he added it to me repeat script.

And then, “Oh,” he said “What else are you taking?”

I started listing “Diclofenac-”

“What’s that for?”

“For hypermobility syndrome.”

“Hmm. Go on -”

“Morphine sulphate-”

“The MST tablets? What’s that for?”

“For hypermobility, again”

A sharp intake of breath.

“How long have you been on them?”

“About a year, maybe a year and a half?”

A sad sigh “Oh, we’ll have to bring you in to get you weaned off them, then”

I feel my heart rate go up.

“What for?”

“Oh, they’re just not good to be on forever, opiates, we’ll see about weaning you off”

“But without them, I’ll be in pain.”

“You have to book an appointment so we can taped you down and get you off them.”


“Book in. You have to come off, it’s not good for you. You’re in on the 20th anyway, we’ll start then.”

Appointment over. My hands shaking, I sleep for an hour to get my racing anxiety back under control.

Upon waking, I was myself again, fury and reason;

1) I’m using them as directed by my consultant rheumatologist, a plan that was also signed off by the national hypermobility clinic in London. If anyone is going to change my medication that radically, it’s going to be the specialists, so book me an appointment.

2) I’ve not had any adverse effects that I can’t deal with. If you think that damage is being done internally, get me a liver function test. If that shows any damage, then we can talk about “weaning me off”.

3) If you take me off morphine, you’ll have to find another painkiller which does the same job. Long term. Safely. Not a GABA-analogue or amytriptalin, since I get horrific side effects with the latter and the former aren’t licensed for painkiller use in the UK and also have no evidence base for use in the treatment of recurrent acute musculoskeletal pain.

4) Clinical guidelines for both EDS-HM and multiple herniated discs are to prescribe pain relief. First line is an NSAID, then the opiates until one is found that works. Morphine works really, really well. Morphine keeps me out of hospital.

5) If you take away my morphine, I will turn up in hospital every couple of days needing someone to reset my dislocations like you would on a fibrotypical person; Putting me under and booking a surgical team. This will be expensive and waste time which could be used treating people who really need treatment. I will also scream the hospital to a standstill in the process. I have an eight litre lung capacity from a decade of competitive swimming, and am a decently well-trained contralto. I can deliver you four octaves of regret at having me in your department.

6) I can also use all of that shouty energy to deliver an impassioned speech to NICE and get you struck off for letting your personal morality override clinical guidelines, you abstemious shitweasel.

7) You’re going to have to do better than “Boo hoo bad for yoo” – Show me studies, relevant ones, about patients in my position, about doses similar to what I’m taking, about comparative harm of a life on opiates and a (clue: much, much shorter) life in unimaginable pain.

8) You’re going to have to explain your reasoning not only to me, but also to rheumatology, the national hypermobility unit, the pain clinic that I still have an open referral to, the pain psychologist who said that taking my morphine away would be tantamount to killing me, the local hospital trust who will be deeply unimpressed with your attempt to increase unnecessary A+E admissions, Stanmore – who are relying on me being pain-free and in perfect physical condition so they can work their magic, my new physiotherapist who would rather work on someone motivated and cooperative than in pain and immobile, and to my friends and my partner to whom you’ve just given a full-time caring responsibility, since sans-morphine I will be unable to function well enough to feed, clothe or wash myself.

9) And this is me we’re talking about. You’re going to have to expect to see me every morning, at the surgery, at 8am, probably with a deckchair and a book so that I can wait all day, until you reinstate my appropriate medication.

If all of that sounds good to you, feel free. I’ll see you on the twentieth.