Wearing Silver

It’s overdose awareness day, so I thought I’d blog.

Overdose is one of those words that is freighted with an awful number of connotations, and those connotations are basically all awful.

“Benny died of an overdose.”

And the wheels start turning in the minds of the ignorant:

What did he overdose on?

Well, if it was prescribed by a doctor, he was either too ignorant to take it correctly, or he was suicidal. If it was something he’d been taking for years, he must have taken too much because a “normal dose” wasn’t giving him the right effect, and he was turning into an addict. If it was an accidental overdose, the doctor shouldn’t have prescribed him something so dangerous. If it was a deliberate overdose, someone (anyone!) should have been watching him more closely. Drugs like that shouldn’t be prescribed, ever.

Well, if it was over-the-counter, it shouldn’t have been available in the first place. What kind of world do we live in where things that can kill people are available without a prescription?

Well, if it was an illegal drug, he was either a terrible criminal or a poor fool who was preyed on by a terrible criminal. If he was an addict, this was always coming and it was his own fault. If he had just taken it for the first time at a party, his friends are all evil and irresponsible and should be pilloried forever, with no acknowledgment that they’re in mourning too.

Was it a deliberate overdose?

If it was accidental, the stuff – whatever it is -shouldn’t be available anywhere in the world ever, and posession of it should be the worst sort of crime, punishable by life imprisonment.

If it was deliberate, then the usual tropes about suicide come out. Selfish, or melodramatic, or uncaring.

And the question that everyone seems to want to ask, in the worst part of their psyches;

What did it look like? How did it feel?

Because enough of us have heard of Nembutal, or or just quietly turning up the IV morphine, or rock stars being found with the needle still in their arm, or horror stories about paracetamol or cocaine, that people have a prurient interest in these things.

No. there is only one kind of question that you ask;

“Are you all right? Is the family all right?”

I don’t have much to say on the emotive front. I’ve lost more than one person to overdose – One good friend, as a teenager, who was taken by a fatal episode of mental illness. One older relative, who knew that there was no light at the end of the pain tunnel, and made an exit soon after saying her goodbyes. I’ve attempted it myself, and learnt the indignity of stomach pumping, short-term dialysis, liver function tests, and not quite being able to look your friends in the eye.

So here’s the practical front;

What to do in the event of suspecting an overdose

Call 999 – An ambulance should arrive within 30 minutes, as an overdose is one of the highest categories of urgency.

Start CPR if the person isn’t breathing, continue until ambulance arrives.

If they are breathing, place in the recovery position.

Do NOT induce vomiting, but if they do vomit, encourage it (Sit them upright, lean them forwards, let them gargle with water in between heaves, without swallowing).

Do not let them eat or drink.

Gather up the packages of whatever you suspect that someone has overdosed on. If there are remaining samples of the drug, give them to the paramedics as well.

Try to ascertain if the person has taken any other drugs, including prescription medication, or alcohol, or food or drink.

Talk to the person and try to keep them calm.

A key thing to remember, if you suspect that someone has overdosed, is that the first stages of a drug overdose often look nothing like the media portrayal of such – The person won’t simply fall to the ground, sweating, shaking and vomiting up brightly-coloured capsules by the dozen. Every chemical has its own syndrome, broadly speaking, and each syndrome will present differently depending on how the drug was administered (IV looks very different to something which has been swallowed or smoked). “A Small Dose Of Toxicology” (Steven G Gilbert) has any number of case studies, so I won’t write them all down, but here’s what a morphine (or a lot of other opiates or opioids) can look like in overdose;

What a morphine overdose looks like

-Extreme tiredness and faintness


-Drooping eyelids

-Pinprick pupils, and light sensitivity

-Itching skin (usually)

-Slow pulse

-Shallow, slow breathing

-Nausea and probably vomiting


-Flushed skin

-Feelings of overheating


…And all of those can signify anything from “Has taken a bit above the required dose, will feel a bit grim tomorrow” up to “Get to the hospital, now”, depending on the person involved.

As for “Why on earth are these dangerous drugs even prescribed?” I’ll leave you with a bit of Paracelsus;

“Alle Dinge sind Gift und nichts ist ohne Gift; allein die Dosis macht, dass ein Ding kein Gift ist.”

All things are poison, and nothing is free of being poison; It is only by regulating the dose that we can prevent a poison from acting.

Paracetamol is toxic. Alcohol is toxic. Peppermint is toxic.

As long as we try to artificially teach people that there are some drugs which will kill them instantly, and other drugs which are one hundred percent safe all the time, we will fail people. We will fail the people who are in pain, but avoid opiates because “Opiates will kill them” and we fail the people who end up with their livers destroyed by having one too many paracetamol for their bad head.

As long as we try to teach people that simply touching a drug like heroin or meth is enough to taint them forever, we will fail the people who end up overdosing because they feel that their life will never be anything but their addiction. We will fail the people who do overdose, then refuse treatment and end up further harmed because they don’t want the stigma of their doctors or friends knowing what they took.

As long as we teach that dying of an overdose is something that only happens to the careless, the criminal and the inherently tragic, we do a disservice to all of the people who have been touched by overdose – Whether deliberate or accidental, fatal or survived, as the person who took the overdose or as someeone who loves someone who has overdosed.

We need to put our house in order about drugs, and start teaching based in evidence.


I am a very sickly Zebra today.

The day before the General Election was a long one.

Physio first. Very kind, very honest, community physio – Asked me all the right questions, was incredibly sympathetic, spotted my popped hip from the far side of the room and through a tracksuit, knew what EDS was and had treated EDS patients before when he worked for rheumatic physio… And admitted straight away that I was too complicated a case, and he couldn’t help me under the remit of the community physio. He also volunteered to chew the ear off my last physio at CA, the same as Dr D did, so that man is going to have the most in-demand scalp in the county. Sixteen-plus years of ongoing pain, with the hypermobility complications, needed more time and effort and specialist knowledge than he could swot up on, so back to the hospital for me. He was what I’d call a “proper physio” – A grey-haired ex-rugby forward, who enthused about keeping fit and said that I was doing all the right things by aiming for ten kilometres in the pool per week,¬† assured me that missing that goal wasn’t the end of the world, and that even trying was better than most people would do, and said that he wished me the best of luck, regretted that we couldn’t work together, and that if anyone was ever going to recover completely, it’d be someone like me.

I’m not sure if that’s just a platitude that everyone says to every patient, but a hell of a lot of knowledgeable people have said it to me, so it makes me feel a lot happier and more encouraged than otherwise.

I actually felt encouraged enough that I went for a swim. I’m continuing my strategy of taking neither crutches nor morphine to the pool, so that I can’t overwork myself in the opiate hubris zone and end up collapsing on the way home. 500m in about 15 minutes, with the limiting factor not being myself, but the fact that the pool was bedlam – Seven to a lane, one of the ropes completely slack, Medium lane full of slow people, Fast lane a combination of pissbreathers (Those people who swim in such close formation that they must be right in eachother’s stream if someone suddenly feels the urge), people doing deadly serious drills (whom I didn’t want to interrupt), one incredibly elderly water-polo player (who was covered in what looked like WW2-era forces tattoos with whom I had a lovely chat about both water polo and the history of the local pool) and me (he of the incredibly erratic split time, even more erratic accel/decel out of turns, and tendency to stop in the middle of the lane every few dozen lengths to reassemble).

Deciding that I was better off taking the small prize rather than knackering myself in a suboptimal pool, I called the 500 a win, and went home.

Then the GP, which went really well – Dr L, someone I’d not met before. Nice, genuinely approachable, said to give her a week to do her reading, then come back and get a referral. Next appointment on the 20th.

Upon returning home from the GP, I found that Dog had eaten a full bar of Bournville. I’d been gone for literally twenty minutes, at most. Panic stations immediately manned, I dragged him off to the vet to get an injection of abomorphine (a REALLY potent emetic), then sat stroking his back and making generally reassuring noises as he vociferously chundered all over the vets’ car park. Whole bar accounted for – Seriously, it looked and smelled like a patissier with a grudge had iced the whole yard in cheap chocolate fondant – We went back home and sat in the kitchen, him looking terribly sorry for himself and me terrified that he was going to have some theobromide still in his system and have a heart attack. He’s a very old man, in greyhound years (He’ll be ten on the 4th of July) so this wasn’t a stupid fear.

Did not sleep well that night – Every whuffle and twitch from Dog woke me up in a panic.

Next day was the General Election – Tasks do do; Get to the vet to sign my insurance paperwork (To keep that bar of Bournville from being the most expensive that I’d ever purchased), and go and do some democracy. The local polling station is at the end of the road, so I thought I’d do one round-trip; Up to the vet, then back down to the church hall, then home. After the previous day, and the night earlier in the week where I’d been awake for something like 40-odd hours having a bit of a manic episode, I was anxious as fuck for a number of reasons. So, I took along Dog in his semi-official capacity as my assistance beast. Not a joke – It’s all there in my psych notes that due to fairly nasty PTSD I sometimes need to have Dog with me in order to function like a normal human being, and most people are fine with this (He’s lazy unto the point of appearing well-behaved, quiet, doesn’t shed too much, and doesn’t leave my side. The lead is basically for show – I’ve led him through a field of lambs with the only tether being a piece of wool from my wrist to his collar, and it didn’t even go taut once.)

I knew in advance that anyone is legally allowed to take their dog into a polling station (There’s no chance of my dog being a paid shill, swaying my hand to vote for his candidate instead of mine) so I walked in through the newly-opened disabled entrance with him at heel. Only to have his lead taken out of my hands (No asking, just taken) with the explanation of “The other attendant is scared of dogs”. I started to panic, and as I do when on the verge of having a massive PTSD meltdown I saw the path diverge – One path said “Deck the shitheel that’s taken your dog”, the other said “Become compliant and get your dog back”. Thankfully, since I have no choice in which road I go down, my proverbial BIOS sent me to the DOS of total basic obedience, rather than the obscure Linux distro of uncontrollable violence. I’m pretty sure that at this point I went to the bench, took my papers, marked them both appropriately, then got Dog back, since the next thing I remember particularly clearly is sitting outside the polling station with my face in Dog’s shoulder, shaking like the proverbial shitting greyhound.

I made a mental note to go back and correct the attendant (You don’t just *take* a man’s dog, you ask if you *may* take it. Not all service dogs wear the big yellow harnesses. Not everyone’s dog is comfortable being handled by strangers, so you could well get bitten. I can only assume that if a blind person came in avec-chien, then the dog-hating attendant would have to leave the bench. Assume that as the priority one solution next time) but didn’t have the strength to do it. Instead, I just went home and tried not to think about the election much. I failed – Slept from about 2am to 4am, woke up to a world of nightmare.

So, yesterday, the day after a Tory government of only borderline legitimacy took power (That’s a tiny minority, and that’s even with the constituency boundaries largely favouring them), I woke up feeling like shit.

At first, I took the pain in my abdomen to be just the continued saga of this fucking coil. By about 13.00, I was concerned enough that I told Dearest and Best Friend that I might be going to hospital. And then the gastric distress started, and I shelved that idea. Somewhat like a bloke with lymphatic filariasis localised to his cock, first I was pleased, then a bit concerned, then incredibly concerned, then I wished I would just die. For context – First I thought that I was just reasonably disimpacting after what had been a horrible week, then I thought that I had a spot of diarrhoea, probably from the severely dodgy out-of-date popcorn and absinthe I’d had for tea the day before, then I thought that I might be having an adverse reaction to the doxycyclin… By 3am, when I was literally passing nothing but bile, stomach acid and water, every ten minutes, uncontrollably, with so little warning that I couldn’t leave the bathroom, I didn’t care what it was, I just wished I was dead. It hurt (Hydrochloric acid failing to neutralise as it passes through the digestive tract will do that), I was getting cramps from the rapidly-changing pressure and bloodflow in my already-tortured abdomen, I was trying to vomit but nothing was coming up, I was utterly knackered and dehydrated.

Oh, and did I mention that this is on top of terrifying chest pain and heart palpitations after trying to ward off a weather-induced migraine with an ill-advised Sumatriptan at 17.00? I was so ill with that (unable to move, curled up in bed, sweating, shaking, struggling to breathe, vision going blue and grey from lack of air) that Dearest ended up cancelling his night out to look after me. I’ve had bad reactions to Suma/Imigran before, but never this bad. Suffice to say, since I genuinely thought I was going to die, I am not taking it again.

So, yes, by 3am I wasn’t sure if it was going to be the heart attack or the dehydration that would kill me first. Drowning myself in the bath was a close third.

I must have got to sleep with the aid of a lot of morphine (Good for both the pain and for stopping the bowel from moving) and diazepam (good for slowing the heart rate and relaxing the intercostals, letting me do a few breathing exercises) because according to Dearest I was singing the Russian national anthem very loudly at about 4am, but he thought it would be unethical to wake me up since it’d taken so much effort for me to get to sleep in the first place.

I woke up at about five, had a brief conversation with Dearest (Reassuring him that I was all right, and not actually about to drive a military parade of rockets on floats down Briggate), and have returned to my nest on the chaise longue.

Today has infinite chances of being better than yesterday. In a bit, I’m going to see if I can drink anything without feeling as if my heart is being stepped on, have another shower, ring NHS Direct to see if I should be worried (And to ask whether I can just stop taking the doxycyclin, since another week of this would literally kill me since I can’t eat or drink), and bizarrely hope for a migraine (The surefire sign that I’ve metabolised the Imigran out of my system and that the chest pains will stop).

So, yeah, my awesome Saturday plans are “Have a migraine” and “Try to drink some ginger beer.”

Then, Sunday is the cricket, Earnshaw willing.

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.

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.

Strange fortune

I’d gone to Rheumatology at StJ yesterday, to see Dr D, which was productive;

-He’s going to send me for a hip and shoulder MRI

-He’s going to point me towards a constulation with a hip surgeon* and a shoulder surgeon

-He’s going to chase Stanmore for me (Hooray!)

-He’s going to get my GP to put my Diazepam on repeat

-He’s going to look into different brands of pain-relief patch, just in case

-He’s going to ask C1, the head physio, to give me a list of textbooks and things so that I can be my own physio from now on

-He’s going to give Physio G a bollocking for being an inattentive, ignorant shite (even the Student Nurse that was in with Dr D gasped at the utter twattishness of saying to a hypermobile patient “Oh, no, there’s no such thing as a hip sublux. A Student!)

-He’s writing me an Official Letter to say “PLEASE for the love of all that’s good in the world stop trying to give him lidocaine!”

-He’s going to send me to another psychology service, to see if they’re more appropriate in helping me deal with my combined mental (The mixture between my EDS-linked stress, depression and anxiety, and my suicidal thoughts and bipolarity).

On the way into his appointment, my back and left shoulder went into spasm, and I ended up taking a lot of morphine (20mg) on the way in. Setting himself apart as a REALLY good doctor, he took the time to let me get settled (Perched on the balls of my feet on top of a chair, shoulders hanging forward like a chimp, as is my wont when I’ve fucked up my back and collar) and went immediately for both reassuring back-pat (At the prescribed 0.03m/s, circular, centred on the point of pain) and for genuine investigation of the worst of the shoulders – Feeling around the acromiclavicular and sternoclavicular junctions, measuring left against right, sticking a finger (carefully!) into the glenoid process and investigating under the scapula and around the bits of the spine (as usual, just between the lumbar and thorassic vertebrae, where I’m now sure there’s a problem) that hurt. He let the morphine do its work before trying to have any sort of sensible conversation, and he promised to send a letter covering the appointment, since he knew that it was both important to me, and that it was likely to be something I’d forget due to all the pain. He also pointed out that, even if I wasn’t actively noticing it, all the muscles around my shoulder and my back were in spasm, and that that was probably a bad sign.

On the way out, my back started getting worse. I had to drop to a squat three or four times in the corridor down to the main entrance (I may or may not have mentioned this before, but one of the great joys of StJ is that the main entrance hall looks like the departure lounge of an airport, and I’m really fond of it. Plenty of warm, accessible places to sit, a coffee shop and vending machines, and accessible toilets. Also always supervised.) and can vaguely remember wobbling down the central staircase since the lifts were still broken.

The next thing I’m really clear on is feeling a bit of spite towards the obviously-healthy paramedic who nipped into the disabled toilets ahead of me, then curling up on the bench outside the toilet, in pain, then handing off my medic alert bracelet and EDS card to someone who worked for the ambulance service, then being in a transport chair, then being almost flung out of the transport chair when it went over a bump, then a lot of screaming as my back arched to the point that my ribs at the back slipped under my pelvis, then a lot more screaming, then being in a cubicle on a bed in A+E, hearing someone say “He’s stopped screaming, but he’s biting his wrist really hard and I think I can see blood” then “We’re going to give you some morphine…” and having a syringe stuck between my teeth. (A further 10mg). I later found out that between the howling and sobbing, I was muttering “I just want to go home, please, let me go home” which apparently influenced my treatment.

At some point, I managed to re-open my eyes for more than a couple of seconds, and found myself talking to a rather sweet young doctor T, with blond eyelashes, who batted away my apologies, fitted a cannula to my right hand¬† (And he was right, he WAS the bloke to go to when the patient had odd veins – He listened to which one I told him was the good vein, used a very tiny needle, and investigated with the needle tip under the skin before going for the venipuncture, to ensure that the vein had run out of escape-room and that he wouldn’t just tear it open, like so many people did) with two ports – One for more morphine, one for dexamethasone.

It was probably about half an hour later that the nurses came and flushed it – cold up to the elbow, perfect – then admitted the morphine (Stopped at 4mg, due to a local skin reaction) then more water, then dexamethasone (No idea how much), then found me a cold flannel for my arm to stop the itching, since my veins in that arm were now black and raised up tight against the blotchy red skin with inflammation.

More time passed. I slept, I think, and the pain started to subside from “screaming whenever I stopped sobbing and biting myself” to “unthinkable” to eventually a dull ache through my whole body. The doctor came back, and volunteered that my best chance of saving the day without needing any worse intervention was to hurry home and take as much morphine as I could hold once I got there, and maybe a diazepam or five, then sleep it off.

One of the nurses removed my cannula, and I apologised for having been snitty and short-tempered, which she accepted with an “In that position, I would probably have been just as snappy” and I was allowed to go home. I shuffled out through the front doors, poured myself into a taxi, and broke down onto the settee in the living room. For the next five hours I drifted between sleep and dreaming, half-watching TV and feeling my left eye start to tic violently.

The tic continued, and by evening it had been joined by a horrendous ache in my sartorius in both thighs – that was an ache I would have expected in the morning, perhaps, after the previous night’s long swim (A performance in which my lanemate was a little dismayed that the Go-Faster-Juice I was liberally swigging as I churned through a 200×4 IM and 2km freestyle was morphine sulphate, not some kind of strong stimulant) but now it was happening and it really, really hurt.

Leery about taking more morphine (With the morning’s slow release and the fill-up when I got home, I was pushing 100mg) I fell asleep at about 2am, and slept like the proverbial brick.

Today, I’m sore, and my eye is ticking, but I feel remarkably good considering the previous day. Here’s to the dexamethasone doing me some good, and once again, hurrah for compassionate doctors who know that sometimes their job is just to alleviate suffering.

Also today, my letter arrived telling me that I have an MRI booked for the 1st of March (Yes, the Sunday) at 1.20pm, at CA X-ray department. With instructions to take out all my jewellery and bring a CD – I’ll probably go for Reise Reise or Rosenrot. Or both. This of course reminds me that I have no idea where any of my CDs are.

Next post is going to be a little pictographic coda to this one, about a single encounter with a nurse which was the only bad encounter all day, and it wasn’t really her fault so much as Society’s fault.

*”Who’s the coolest person in the hospital? The hip surgeon! What about when they’re on holiday? Then it’s the hip replacement!”

Pain upon pain

I’ve mentioned a couple of times that I sometimes self-harm, largely as instant pain relief (This is why I want to get some faster-acting painkillers, so that I don’t end up resorting to the scalpel), and yesterday’s complete shoulder-girdle pop (Acromiclavicular, sternoclavicular, glenohumeral, scapulothoracic… argh) was enough to induce an episode. Unfortunately, it was enough to induce an episode even after filling up on morphine. The result being a lot of very deep cuts that I didn’t really feel very much of, and needing to limp over to the pharmacy (On wrecked hips, making matters worse) with my cane in my off-hand (due to my left shoulder being in a million pieces, and my left forearm leaving a trail of blood almost all the way from my door to the shop) to get bandages and antiseptic.

Arriving at the pharmacy, though, I obviously couldn’t just get the bandages and leave, because I was bleeding all over their floor and obviously shaken up and with one hand almost completely grey and an immobile shoulder. I was sat down in the consulting room, wiped off with alcohol, asked politely if I was on any psychiatric medications, then allowed to bandage myself up and go home.

The irony being that by the time I’d wrapped up, the painkilling effect of the damage had worn off, and I was just as knackered and sore as I would have been otherwise – In addition to the pain of having to go out and buy all the sodding antiseptic.

Ah well, rheumatology tomorrow. In preparation for that, I rang Stanmore today to see if they had my referral, from either UCLH or from my GP, and they’ve not got me at all. So it’s honestly starting to look like all the London stuff was a waste of time and effort on my part, sine nothing has been done about it. And I still have to fight tomorrow to get imaging on my shoulders and hip. That’s the imaging that I was first told that I needed in July and November, respectively.

The wheels of bureaucracy do grind slow.

Seeing the future, seeing the guts.

In Thursday, in attempting to not get sent back to hospital with horrible muscle spasms, I phoned my GP. After a quick chat to the receptionist, I got through to Dr C, who sounded panicky and sad, and prescribed me some emergency diazepam, which a friend picked up from the pharmacy for me, thne told me to go in for an appointment the next day with Dr R.

Dr R is great – He’s always a bit harrassed-looking, but he wants to get things sorted and he likes me, and he’s not superstitious about giving me medication. He swapped my naproxen for diclofenac earlier this year, and now he’s increased my morphine back up to pre-new-practice levels (ie – 400ml a month instead of 300ml, which should put me back to being in a sensible equilibrium). He’s also told me that he’s phoned Stanmore abot my referral, and that I should be hearing back from them, and that he’s now booked me in for a spinal MRI in case my discs have prolapsed, since that could be where the pain is coming from.

He’s also cleared up that it is definitely Rheumatology’s job to get me MRI or ultrasound on the hip and shoulder, so I can argue with them about that on Wenesday. I’m also going to use Wenesday to push to be given a repeat prescription of diazepam, since constantly getting emergency benzos is more stress than I need.

Next week is the contraceptive clinic. I am not looking forward to it. I may need to arrange transport, since I intend not to be very concious for most of it.

New Year, New Meds.

So, yesterday was my first GP appointment of the new year, with Dr R. I’d seen Dr R on the 23rd, and he’d told me to basically take more morphine and look after myself, which was very reasonable, so seeing him again yesterday was actually a relief – He’s not superstitious about muscle relaxants, for starters.

First step was to put me back on the irregular diazepam.

Second step was to get me genuine, adult-sized suppositories – The Nice Scottish Pharmacist did have a bit of a giggle about my having aged terribly over the last couple of weeks.

Third step was to replace the 500mg of naproxen twice a day, which I’ve been on for two years, with 75mg of diclofenac, twice a day. I used to take diclofenac many years ago for back pain, and I really liked it then, and I hope that I’ll like it again now. If nothing else, I always get an amazing night’s sleep after taking it.

And the final step was that Dr R has taken over responsibility for shouting at Stanmore for me. So I can just get back to looking after myself. All I have to do is bring him in a photocopy of the London letter on Monday, and he’ll do the rest. Magic.

So, 2015 looks hopeful so far.

Swings and Roundabouts in the Rat Park

Yesterday night was a long, long night. Got to sleep around 4am, woke up at 5.30 after a nightmare that was violent enough that I fully dislocated my shoulder in it, leaving me basically trapped in bed, then dozed on and off unti leaving the house at 7.30 to get to my 8am GP appointment with Dr Hpm. I had five questions, and these are they, as I asked them, with the answers;

1) Can I get half of my Laxido swapped for glycerin suppositories?

a) Yes, of course. Here, have a non-repeat prescription for twelve infant-sized 1g glycerin suppositories, which the pharmacist advises “Oh, just take five at once”.

2) Can I have my NSAID changed to a stronger one?

a) Yes, of course, have some diclofenac. I somehow manage to leave without a diclofenac prescription though.

3) I’ve not slept normally since March, it’s making me exhausted and feel like shit, and I’ve been taking far more diphenydramine than I really want to. Can I have some help?

a) No, because you might end up addicted to sleeping pills. Have you tried a hot milky drink? (Literally. He actually invoked the legendary ‘hot milky drink’. He may as well have said ‘How about turning off all the screens and sitting quietly for an hour before bedtime?’ This ignores the fact that I no longer have a ‘bedtime’, and that I wake up screaming at least twice a night. He said that sleeping pills were only very rarely given out, nowadays, and that they were worse than heroin and stopped working after a week (All verifiably false, by the way, I know plenty of people who take zopiclone regularly and have done for years, and it still work.)

4) Can I have more diazepam, the stuff that everyone has been happily prescribing me on an as-needed basis for most of this year, and that has been the only thing to reliably stop the muscle spasms?

a) No, because it’s addictive. We don’t want you to end up with an addiction problem on top of your existing problem.

4b) Can I have a non-addictive antispasmodic then? I do need something to stop the painful spasms which can cut through heavy doses of morphine and turn my hands blue.

a) No, have you tried putting a heat pack on them? Or an ice pack? Two pounds of frozen peas, that’s the best thing.

5) Physio told me that my GP was the one who needed to sort out the investigations into my hip and give me the steroid injections. Will you?

a) No, ask Rheumatology.

In fact “Phone them up and ask yourself” was the answer to all my questions about other departments and trusts – Rheumatology, Stanmore (With the addition of “Say you’ll take a cancellation, that you’ll get down there at a minute’s notice”), CBT for Pain. Everything.

He was also very, very concerned about the fact that I used morphine as a painkiller. Worried that I was addicted. And lo, has kept me on half rations for a second month, meaning that I’m going to spend another month in pain. If you give me 60 tablets to last 30 days, and tell me to take 1-2 every 12 hours, I’m going to run out by about week three. Or I’m going to go back to rationing out my medications, and spending most of my time in a medium amount of pain. And sleep less.

But now, really, I want to talk about addiction.

The title of this post for once actually has meaning, rather than just being a random thought that’s popped into my head whilst loading the page. The Rat Park experiments were a series of experiments (no shock there) done on rats (surprise!) by Bruce K. Alexander that involved altering various features of their environments and seeing how willing they were to take morphine in various situations. The (simple) version of the outcome of the experiments was that there’s very little basis to assume that a drug-induced adiction theory is correct.

So, what’s drug-induced addiction?

Basically, there’s two ideas about how people become addicted to substances; Drug-induced addiction is that the very nature of the drug makes people addicted to it (This giving rise to myths like “If you take crack cocaine once, you’ll always need more, because you’ll be addicted”) and the other is that it’s the social factors around drug-taking that make addiction possible in the first place (Alexander’s words were “Severely distressed animals, like severely distressed people, will relieve their distress pharmacologically, if they can”). Effectively, if (as a human) your association with morphine is that it’s the thing that you take for fun and to get high, you’re likely to get addicted. If your association with morphine is that you take it to relieve pain, even though you’ll incidentally get high, you’ll possibly end up with a dependency, but you won’t end up addicted.

If you’re interested, look up Bruce K. Alexander’s papers on addiction, he obviously talks about it in much greater depth than I can here, and with much better clarity.

I am dependent on morphine. I sometimes take it at levels which could be dangerous for someone who is morphine-naive, and usually take it at levels which would make someone morphine-naive very lightheaded and drowsy. This is because I have a tolerance for it, which is another side effect of regular use. My need for morphine is because I have regular, acute, musculoskeletal pain, radiating from constant fresh injuries, for which I must take a strong painkiller. The strong painkiller which works best for me is morphine. Thus, I am dependent on morphine. If I was no longer in pain, I would no longer take it.

You probably know what addiction feels like – Most people have felt headachey and faint after missing their morning coffee, or short-tempered and generally terrible when craving a cigarette. And with that feeling of “urgh” comes a craving for more – More caffeine, more nicotine. If I go for a week without morphine, I don’t feel terrible, and more importantly I don’t crave more to take the withdrawal effects away. For the first day, I get a slight headache and feel stiff, bruised, sleepy and emotionally fragile, but my drug of choice to fix that isn’t “more morphine”, it’s a paracetamol, and lots of fruit juice, and maybe a nice heavy breakfast. If I was addicted, my first instinct on feeling that distinctive bruising around my eyelids wouldn’t be “Oh, time for a big cup of tea and a lazy day” it would be “Take the morphine.”

I’m dependent, I’m not addicted. And I know that having a life without hypermobility related pain isn’t possible, but that the best chance I have for getting somewhere close to that is a mixture of exercises and medication. And the medication makes it easier to do the exercise. Grim as it sounds, even if I was addicted – If I motivated myself to go out and do things with the promise of morphine when I got home – that would still be better than spending my entire life in pain and miserable, for the sake of not offending the puritan sensibilities of a doctor.

Ew, cripple sex.

Sorry. Just thought I’d get that thought out there before anyone else thinks it.

Right, yes.

I have a notoriously high sex drive. I love it. I have described it in the past as “That hobby that I can do when I’m too short on brains to do anything more complicated.” but it’s also a nice way of interacting with other people for the sake of interacting with them, or for having lots of nice physical feelings, or for feeling closer to the other person, or just to be nice to someone, or to find out a new sex-thing, or for all sorts of reasons.

And I am very, very aware of the importance of consent. Several years ago, the original shoelace-tier waited until I’d taken my evening medication, and raped me. That was a mess. Before that, an ex used to wait until I was so stressed and angry that I dissassociated, and then have sex with… Well, the other thing. I can barely remember. He stopped, when the other thing left him in a bloodied heap. Another used to semi wake me up in the morning, or at night, then pressure me into sex before I was fully awake.

And on a more personal level – I really hate the thought of having sex with someone who isn’t incredibly enthusiastic about sex at that time – Whether it be because they really want sex with someone now, or because they really want sex with me personally now, or because they want to try out a new thing, or give me a bit of a present, or try out a thing they’ve just heard of and thought I’d be good at, or whatever. I physically shrivel at the thought of hurting someone, or having someone be too polite or frightened to say “Actually, no, I’m really not interested”, or of continuing during sex with someone who has mentally checked out, but is acting the part so as not to offend me.

For the record, I know that sex with me isn’t always the easiest thing in the world.

I have Ehlers-Danlos Hypermobility. I can’t always support my own weight, or coordinate my movement. My joints dislocate easily, and at least my hips and shoulders, and usually my wrists, do as well during sex. Every time. Yes, I can put my feet behind my head. Yes, I can get my hands to places that you’d never normally expect to manage. But honestly, being alive and in this body all the time hurts, to the point that ninety eight percent of the time I’d rather just have a quiet wank in the company of nice people, and leave it at that.

I keep seeing a repeated meme in consent culture; “You can’t consent if you’re intoxicated. If you’re too high to sign a contract, you’re too high for sex”, and to a certain extent I agree that, if you’re beyond a certain degree of intoxication, you can’t consent. If you’re completely blackout-drunk, you can’t consent. There’s a big uncertain zone in the middle where you might really consent at the time, but where a sober-you wouldn’t consent. And then there’s where I exist, all the time.

I take morphine. A constant, low-level trickle from 20mg of slow-release a day, with more on top of that in the form of Oramorph – 10-30mg at a time. To be pain-free enough to even contemplate sex, I generally have to have taken about 20mg of Oramorph within the last half hour. At that point in time, I wouldn’t be able to sign a contract, drive a car, remember my seven times table or play chess. But it’s the only time I have in which to have really satisfying sex, that doesn’t hurt, that I enjoy, and that is practically possible.

Current thinking on consent means that, in order to toe the party line, I have to be celibate.

I don’t agree. I enjoy sex. I enjoy sex with other people, more than masturbation, and I want to be able to keep having it, even though I am usually “too intoxicated” by the “can you sign a contract?” metric. I have had a lot of sex whilst intoxicated which has been some of the most joyous of my life. I have experimented with new kinks and new partners. I don’t want all of that to be immediately grabbed by people with no idea of nuance who will scream “You’re in denial!” at me.

How’s it done? Talking. Endless talking. Discussion with anyone that I’m likely to have sex with which talks about what we both do and don’t like, and what consent and non-consent physically looks like whilst under the influence. Plans in advance of when it is all right and not all right to initiate sex. Discussions of the notable non-correlation of my physical response and my actual consent (Morphine can make you a little bit impotent, and conversely can give you inappropriate hard-ons at a slight breeze. I can be very up for it, but not quite up for it, if you see what I mean. Lots of lube and care needed). Slowly introducing any new sensation or position, and checking during the act whether we’re both fine with it. Gradually becoming more ambitious and fluid with repetition and familiarity and lots of non-verbal communication.

Not less morphine. Many, many years of painkiller avoidance has taught me that less morphine isn’t the answer.

So why does it annoy me so much, rather than just being another basically-good idea that gets lost in the nuance-free shouting of most internet discourse? “Nothing whilst intoxicated” is a good rule of thumb, isn’t it? Unless you’re really good at very honest communication, to a level of honesty that most people are scared by, just avoid the drugged sex and you’ll be fine. No big hardship.

But no. It’s not fine, because it’s just another thing which suggests that disabled people don’t have sex. It ignores that a fair number of us need drugs which affect our moods and judgement (Whether directly or indirectly) just to get through the day. We don’t need to feel lik, by having sex whilst continuing to take our medications, we’re doing something irresponsible or off-message. Our partners don’t need to feel like they’re probably raping us every time we have sex. If nothing else, it takes away our ability to define for ourselves that some interactions are consensual, and some are rape. The second person that I confided in, about having been non-violently raped whilst high on my own painkillers (Taken according to the packet instructions, thank you Tramadol), insisted to me that there was no difference between that and consensual sex with my partner. Repeatedly. Told me over and over that if I wanted to call ST a rapist and a bitch, I had to say the same thing about my partner. Until I was actually crying, and they were making sure that they’d won the argument with “I know it’s upsetting, but you have to accept that you’re being raped all the time!”

GPs, physios, and therapists over the years have been variously horrified, incredulous and disgusted that I was having sex at all. I’ve had one burst into giggles at my frustration at a medication which briefly destroyed my libido. I’ve had one actually say “Oh, but of course [loss of sexual function] won’t matter to you because…” and only stop when I gave her a stare that nearly made her combust. I’ve mostly just encountered dismissal and disbelief that my sex life could be a part of my life that I valued.

And this is because, in the public opinion, disabled people aren’t sexual creatures. We go to bed early, and drink cocoa, and have strange, beige appliances all over our houses, and wear ugly clothes, and socialise at carefully-shepherded daytime events. You’ve never known futility until you’ve tried to get a wheelchair taxi at 3am when you’re drunk. Our friends are angels and our partners are diligent carers, nun-like in their habits and acting as our chaste companions.

But yes, effectively – Until we get around the idea that someone can be on a lot of prescription medications that alter their mood or inhibition, but still be willing and able to consent to sex, we’re adding to the idea that disabled people aren’t sexual. And that adds to the infantilisation and othering of disabled people, and the isolation of their partners, and the dismissal of their relationships as somehow “not quite normal”. And that’s really, really damaging.

If you’ll exuse me, I’ll be in my bunk.