Desmond Strikes, part the second

So, when we last saw our intrepid hero, he was lying in bed, trying to sleep off the effects of a fairly minor-in-the-grand-scheme-of-things crash, and worrying about a smashed indicator and a parking ticket.


By about 7pm, he’d been persuaded to call 111, just to get checked out. The story continues;


“Is that a male name, or a female name?” “It’s just my name”


The dispatcher really needed to know. This was the most deadly important thing. Having found my records by my address, my full name, and my date of birth, they had to know. This was the thing that would determine if I was the right person, or some kind of imposter.


“Yes, but is it a name name, or a female name.”


I bit my tongue against saying “It’s the name I lowsided my bike in.” and answered. She seemed relieved. Now she knew whether to send the Cindy’s Dream Ambulance, or the Thomas the Tankambulance.


But the short version was that I needed the ambulance.


The paramedics arrived within half an hour, and were basically the traditional Good Cop, Bad Cop. One sympathised about how bad EDS was, the other demanded to know why I didn’t have a job. One commisserated about the bike and talked about his friends who were bikers, and the other told me that I couldn’t take my morphine or my stick into hospital, since I “didn’t need them”, and actively tookt he morphine out of my hand and put it out of reach. I didn’t have the strength to point out that this was immediately contrary to the hospital’s guidelines on medication, which say that you should always bring your medication with you.


The tone from both of them was pretty much “And you rode home, got changed, made yourself some tea, went upstairs, got into bed, and waited five hours before deciding that it was worth calling an ambulance? After crashing your bike and turning your foot through a hundred and eighty degrees? You’re an idiot.” but from one of them it was affectionate and understanding, and from the other it had a ring of disbelief about it.


Thankfully, the more pleasant one was the one who sat with me in the back of the ambulance, after they’d slid me down the stairs in an evac chair (Hell on the  lower back, by the way, avoid if you can), and passed me the nozzle of the entonox. He said that if he’d not just taken my pulse (135) he wouldn’t have believed how much pain I was in, because I was keeping it together rather well. I thanked him, disclosed that as soon as I took the entonox the mask would crack and I’d just be like a normal person in pain, then took it anyway. It took two lungfuls for me to start crying uncontrollably and screaming in pain, then about three more before I wasn’t in pain anymore, and was just really upset.


On the drive up, we were overtaken by a delivery boy on a scooter, who was being flung aorund in the gale-force winds as much as I had been. No amount of financial compensation should make it worthwhile to risk your arse on wet roads in the dark, in gale-force winds, on a bike that weighs next to nothing.


We got to the LGI, I got settled into a booth for a long wait, and was plied with morphine. Nurses came and went, took my blood pressure and pulse, and it wasn’t all that long before I met the first doctor, whom I’ll call Dr RZ. RZ was really helpful, and very much into the school of “You have to look at, and touch, your patients as well as asking them questions.” He felt around my ankles, knees, hips, ribs, hands, the worst of the shoulders, and listened when I said that the pain from the crash and pain from EDS weren’t all that different – Both came with a lot of stiffness and soreness, both hurt when lying still as well as moving, both made things weak and fail to hold weight. He decided on x-rays for the knee, the hip, the whole pelvis, since a hundred-and-fifty-kilo motorcycle had fallen on it at fairly high speed, and the ribs, since they looked cracked from the outside. He also knew to ask the important question; “Is the bike all right?”


Radiology was great, and prompt – Two impossibly young technicians, both eager to do their jobs right and to make sure that the patient was fine and in one piece, who took endless views of basically all of me, whilst making cheerful small-talk about radiology in general. And then I was wheeled back to my bay to wait.


I must have waited quite a while, since it was nearly midnight when I asked if I could have a cup of tea, and was refused, and by that point I’d done a lot of embroidery and read a lot more of the Reverse Of The Medal.


It was one in the morning by time I was visite by Dr RZ again, along with another doctor who must have been an orthopaedic that I’ll call VT, because he was the tallest person I’ve ever seen. Now it was VT’s turn to try mobilising my leg, which he managed, and then said “Yep, this and the x-rays… You’ve got a chipped fibula. Which takes 13% of your weight, so walking is going to hurt.”


Comisserations were passed around, I declined having a pot on it because I wanted to be upand about, and I was plied with more morphine and told that I could go home.


And that was when I descended into hell.


I’d come out with no money, in my pyjamas, with only the bag that I’d taken out with me in the morning, which contained a towel, a notebook, a novel, some embroidery and, as I later realised, an empty bottle of morphine. So I went to the nurses station to ask if they could book me patient transport. Nope, they didn’t do that sort of thing, I should have thought about that before I left the house. They could give me a number for a minicab firm though. I tried six minicab firms, under their watchful eye, none of which were picking up, because it was a Saturday night at half past one.


The matron told me to walk down the corridor to the hospital account phone, since then the biggeest local minicab firm would have to pick up. Lo, they did not, even though I’d walked all the way through the department to get to the phone.


I came back to the nurses’ station. I was told that I’d just have to go out and try to hail a taxi from outside.


The nearest cab rank was at the railway station. So out I went, into a hundred-year-storm, freshly dosed with far too much morphine so I felt sick, in a pair of flannel pyjama bottoms, a t-shirt, one thick sock and one thin sock, trainers with the laces untied, a walking stick and a broken leg. At about half past one in the morning.


I was halfway to the station before a passer-by, a South African exchange student, stopped to help me. She gave me her scarf, sat me down in the lee of a building, phoned another dozen minicab companies for me, phoned two of her friends who had cars, all the while coming back to check on me between calls, to make sure that I hadn’t frozen or died, until eventually she managed to flag down a taxi for me. Grateful in extremis, I gave back her scarf and wished her well, and was still mumbling my incoherent thanks long after the taxi was speeding along the ring-road back to my house.


I got home, told Dearest and a few others that I had indeed ridden home on a broken leg, in a storm that had closed half of the country, and passed out in a heap on my bed.


I did end up in hosptial yesterday, in the end.

I phoned 111 at about four, and there was an ambulance at my house by half past, with two cheerful paramedics who helped me into some real clothes, fed the dog and sent him to Downhill Neighbour’s house, shared a plate of cinnamon rolls with me, and joined me in my despair when the doctor they called for was completely unhelpful (He decided that the appropriate response to “I’ve taken as much morphine as is safe, and am still in pain” was “Take more morphine then.”)

So, the only solution was to load me into an ambulance at take me to St J. On the way in I was given gas and air, so by the time I was at the hospital I was both no longer in pain, and feeling kind of strange. So when the second of the two paramedics said “Oh, you’ve been playing noughts and crosses on your arm, eesh, you shouldn’t do that” I had no too-much-information filter and replied with “Given the choice between taking enough morphine to competely shoot my liver, and having chequerboard arms, I will always pick the latter” and she winced and looked utterly scandalised, then refused to talk to me for the rest of the transfer. In retrospect – Anyone who pokes the privacy ulcer should expect it to perforate and spray them with unpleasant truth.

I got into the A+E waiting area, was tagged in, then told that there was no cubicle available, so I’d have to wait on the metal chairs. I picked up a book (Harry Potter and the Order of the Phoenix, a good-sized brick to last me through since I’d forgotten to bring a book of my own) and settled in across five empy seats to try to sleep.

It took three hours, of intermittent sleep, reading, and losing the ability to move independently, including some of the most frightening back pain I’ve ever felt, before I was helped into a cubicle where I could lie in a more normal position and take yet more morphine.

More hours passed. I managed to completely panic a nurse by getting her to help me reset a spontaneous shoulder dislocation. I took more morphine, and dreamt about trains.

I was eventually woken up at about 11 by a doctor who, I swear to god, looked like Stuart Broad. Not just “Vaguely tall and blond” but “Looked exactly like the noted England bowling all-rounder.” I immediately developed a speech impediment and tried to look less like a complete mess that was only wearing pyjamas.

He introduced himself, apologised profusely for the wait and the pain, then said;

“Aw no, you’re not going to be wearing underwear are you?”

I went a terrible, pomegranate colour. He offered me a gown.

“You may as well just tie it on like a skirt, to protect your modesty a bit, but I’m going to have to examine your legs and your anal sphincter, that’s done by-”

My sensation of wishing for a less attractive doctor got about a thousand times worse.

“I know. Knees up, glove on.”

He checked the sensation in the legs first, apologising profusely every time he had to set off a twitch in the right leg since it made me fly across the bench and make sad dugong noises, and reported them as “Basically fine”, as well as the usual doctor-that-is-paying-attention response of being fascinated with how zebra legs work (“Your knees go backwards. If I press here, will your leg just keep moving upwards? They rotate a lot further than you’d expect”) Then it was the turn for the spine (“Nice tattoo, what the hell happened to your back muscles, I am so sorry that looks so painful”) He then went and got gloves and a chaperone, got me to assume the position, and tried the DRE. First attempt, I flinched (just through cold and surprise), and the chaperone, instead of being an impartial observer, decided that it was appropriate to grab both of my knees and try to hoick them up further to my chest whilst telling me off for flinching. This resulted in an actual scream of pain, further flinching, and a stream of four-letter abuse towards the cack-handed twat that saw a patient presenting with severe pain and lack of mobility in the hips, and tried to drag their legs around with no medical rationale and no asking for consent.

The second attempt got a “Yep, your sphincter is fine, but your lower back is a mess, which I suspect isn’t news to you.” and he sent the chaperone away to get me a porter to take me for x-rays on my pelvis and hip joint, and also to bring up my last spinal MRI for him to have a look at.

The second after she had gone, he said, in a very calm, measured tone “I’d have kicked her. you could have kicked her, and I wouldn’t have said a word. You don’t touch a patient like that.”

I thanked him, and continued trying to squeeze some life back into my now-dead leg, and he went on his way.

Not long later, I was portered through to x-ray, where the incredibly youthful radiologist immediately struck up conversation, asking how things were going and once again apologising for the long wait.

“It’s not been that bad, but a couple of minutes ago a complete stranger did put his finger up my bottom, so it’s been a bit surprising.”

And without missing a beat she replied with;

“Oh no – the really good looking one? God, I can barely talk to him, never mind… Oh god. You poor thing, it wouldn’t be so bad if he wasn’t just so nice as well…” and then started collapsing with the giggles. I had to join in the giggling, mostly due to be being glad that someone else also saw the ridiculous depth of embarrassment at the situation.

She got the images neded – with the obligatory “Do you have a piercing? It looks like a little planet with rings! And it’s right in the way of the pubic arch…” then retreated to the prep room to apparently die of a giggling fit (It ECHOED) before coming back and taking me back to the waiting bay, where a porter took me back to the main ward.

Not long after, Dr. Broad returned, with good news and bad news – The good news being that it was definitely sciatica, the bad news being that A+E can’t prescribe painkillers for neuropathic pain, and that it has to go back to the GP. He mentioned amytriptalin and pregabalin, and I gave the obligatory groan; Mention neuropathic pain once, and a GP will assume that all of your pain is neuropathic, even if you present with a broken finger.

I told him this, and he agreed, and confided that he’d had sciatica once, which took a while and gabapentin to heal, and then every other injury he ever picked up, doctors had assumed was neuropathic. He promised not to use the word “neuropathic” in the letter, and to also point out that he’d seen me reset a stubborn dislocated shoulder without even thinking about it whilst we were talking.

Once again, the takeaway was basically that I needed to get back to rheumatology, sharpish. And, thankfully, that I wasn’t going to suddenly lose function in the leg and cause havoc on my CBT, as long as I could deal with the pain during it (And, adding the CBT to the four-times-a-week swims, getting a bit of a laugh and a “You really aren’t letting it slow you down”)

Then he offered to admit me into hospital, since it didn’t look likely that I could cope safely at home, with how much pain I was in and how badly I was moving. Admittance would have got me into rheumatology more quickly, would have got me fitted for a better mobility device (probably a walking frame or a wheelchair) and would have, obviously, relieved me from the pressure of having to prepare my own food or do my own paperwork for a few days.

I had to weigh it up really, really carefully. From where I was, there was no downside to it. Apart from the obvious – Having to do more paperwork with the DWP, and possibly having my benefits cut whilst in-hospital. So I didn’t take it. But the offer is, apparently, there. I suspect that when someone turns up in this much pain and with this much loss of function, but still alone, there’s probably cause for concern.

Overall, a bit of a mixed bag. I’m back home, still in as much pain as when I started, but I know what the problem is, and that it’s not going to get noticeably worse. I’ve slept most of today (It’s taken me about eleven hours to write this) and I’ve missed both yesterday’s and today’s swim. This is probably about par, really. One good paramedic, one bad paramedic, one good nurse, one bad nurse, one good doctor, one giddy radiologist. Letter sent to GP yesterday, phone message left with rheumatology today.

I’ll be fine, I always am.


So, yesterday turned into a complete clusterfuck.

After having woken up at 04.30, and dismissed the pain in my abdomen as “period cramps”, things kind of deteriorated.

By 3.30, I was in so much pain that I could barely keep my composure on the phone as I rang the GP to ask for an emergency appointment. I was actually in so much pain that I took a taxi to travel the less-than-a-hundred-yards to the surgery. I was piled into a transport chair at the surgery, and seen immediately by a Dr W, whom I’d never met before, who quickly palpated my stomach, rang an emergency ambulance (“here in ten minutes”) and told them to take me to gynaecology at StJ.

The ambulance arrived, I was shovelled into it, and handed the nozzle of entonox. The pain lessened, and I started being able to explain the problem, doing the standard in-ambulance checks (Blood pressure, heart rate, preexisting conditions), and phoning Best Friend and Dearest to tell them where I’d gone. Then the canister ran out, and I was back in acute abdomen hell. I fully expected the paramedic (A nice Australian who got a good balance between being genuinely worried for me, professionalism, and keeping me calm) to say that an empty canister meant that I’d had enough, but instead he just got up, installed a new can mid-transit, and handed the mask back to me with a cheeerful “Fire in the hole!”

At this point, I inhaled enough that I bascially only regained consciousness upon arriving in Ward 26, who immediately sent me along to Medical Assessment, where I was put in a chair in a waiting room with several other patients and the snooker on the TV. Every now and then the pain broke through to “Uncontrollable” levels, and I curled up and howled for a bit. An incredibly sympathetic nurse (Nurse H) came and took my blood pressure, then eventually took me off to a private consultation room to get my bloods (Checking for systemic infection) and generally confirm what the problem was. She had literally no idea what hypermobility was (“Oh, I just thought it was shorthand for having mobility problems”) so I proceeded to fascinate and horrify her by dropping a shoulder out of the socket and letting her put it back, and we generally had a really nice conversation about basically everything – She’d trained where I used to be a technician, we used to frequent the same bars, she asked the traditional leading question “So, do you live with your girlfriend?”, and was generally very, very friendly. After about three hours in total in Assessment, where I’d had a single dose of morphine for pain relief and nothing more, we said our fond farewells and I was transferred off to Gynaecology, where I should have apparently been in the first place.

I was put in another transport chair, and portered over to Gynaecology, which had moved, so which took a few more detours than I’d expected. At this point, I was texting Dearest as to where I’d gone, and had to update him about five times.

Gynae was a very modern, labyrinthine series of private treatment rooms, one of which I was immediately installed in, my stats taken again by another nurse, and I was left alone. After having read the contents of the instrument drawers a dozen times, and thus gone thoroughly out of my mind with terror and taken a single diazepam to clear my head and loose the  tension from my whole body (Now frankly tortured by the four hours in uncomfortable chairs), lay down on the examination bench, and continued reading (The flight to the Walpurgisnacht ball, Margarita’s remarkably affectionate scene with Woland and his retinue as they prepare for the guests).

(Relatedly, at some point I have to do a cripple’s-eye-view analysis of Woland. His accepting of guests and still being a commanding presence whilst sitting in a mess of old bedlinen, wearing only a badly-darned nightshirt and slippers, and having his rheumatism-slash-witch-related-injury attended to by Hella, is increasingly an inspiration on how to conduct business. It was actually only in that scene where I noticed that he’s always portrayed as sedentary, as leaving everything early, and as not only walking with a stick but actually being lame)

It took a further five hours to see a doctor. I was periodically checked up on by a nurse, who very much fell into the category of “Absolute solidarity with anyone else stuck in this godforsaken buildding so late at night” and was periodically told “You’re next on the list, won’t be long now.” She gave me a dose of morphine, which was no help (I later found out that I’d been prescribed 2.5 mililitres of Oramorphy, or 5mg of actual morphine. Considering that my starting dose is 14, this explains why for much of the rest of the night I alternated between screaming and sobbing, pacing like a caged polar bear, trying to distract myself with my book, and creating gynaecology-specific lyrics to Chris Cafferey’s “Pisses Me Off”.)

At eleven, I went for a leg-stretch around the corridors and saw a sobbing, frightened-looking woman in a hospital bed being wheeled through the department. A few minutes later I was told that the doctor had gone into theatre, and would be a little bit longer. I was mostly just glad that I wasn’t the woman in the bed.

By 12.30, when I was lurking near the break room in the hopes of scavenging a cup of tea, more morphine, or a biscuit (Hadn’t eaten for over twenty-four hours, since having about half a Chinese takeaway on Thursday evening) I saw the same woman being wheeled back, unconscious.

At one, I met the doctor – Impossibly young, impossibly cheerful for someone who had just done abdominal surgery in the middle of the night, and I immediately wished we were friends. She checked over my abdomen again, working out that the pain was all basically in a quadrant between my navel, the top of my left iliac fossa, and the centre-line of my pubic bone. She, again, asked if I was generally fit and well, and I told her about the hypermobility syndrome, to which, instead of getting a blank look, she said “Oh, join the club”, and soon after launched into an anecdote about a shoulder sublux whilst performing a caesarian section, which she cracked back into place without even needing to rescrub, or the patient suffering at all. I was moved to describe this as “badass”, which she agreed with wholeheartedly, and immediately started taking the piss out of rugby players with their “Oh, I dislocated a shoulder on-pitch and my coach just punched it back in and sent me back onto the field” stories. So, of course, I had to tell her about the time I’d been manually examining a cow’s cervix and ended up getting my forearm back, but not my hand.

It was decided that she’d have a look at my cervix, to see if the coil was still in place, take swabs for pelvic inflammatory disease, gonhorrea and chlamydia, treat for them all anyway, and then see what happened next. As such, I stripped below the waist, was handed a speculum (Both her and the attending nurse were surprised, impressed, and thoroughly supportive of me having control of what was going on, since as she put it “It wasn’t in anyone’s best interests to traumatise me so much that I never came back”) and played the feindishly-difficult joystick game of “Where the fuck is Percy’s cervix?”

Cervix eventually found, I got some good news – Nope, there was no plastic sticking through it, so the coil hadn’t slipped down. The bad news was that there were no visible threads anyway, so it could have gone up, and be basically anywhere in my abdomen.

…So, at some point within the next two to six weeks I’ll be having an ultrasound to find out where my coil has gone. If it’s not the thing hiding in my left iliac fossa and causing all the pain, I’ll be amazed.

At 2am, with a letter for my GP, a couple of boxes of antibiotics, and a promise of an ultrasound coming up, I went home. I’d been in the hospital for ten hours, and most of that was the nine-hour wait to see a doctor. That’s pretty amazing, considering that the GP who originally phoned me in said that I needed to be seen immediately.

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.

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!”


So, once again, on a Tuesday after CBT (Discharged, and told I was doing really rather well actually) I found myself in accident and emergency – This time at StJ’s, and for myself, and with a serious rectal bleed.

No conclusions as yet, other than that it’s not an infection, and I don’t have gallstones. On the other hand, I was there and in pain until four in the morning, watching the snow build up outside.

Back at CBT, I was told that I was right – this was therapy for a problem that I don’t have. Which is good – I’m definitely dealing emotionally with the pain as well as can be expected. On the other hand – I’m definitely dealing as well as can be expected. Losing a few days to pain is just going to be normal. Self-harming to distract from worse pain elsewhere is “at least less damaging than what you could be doing”.

We’re now under a lot of snow, and unreasonably cold. I kind of want to give up.

Rats in the ceiling for that well-toasted feeling.

Long story, I suppose. Settle in with a chocolate liqueuer.

A few days ago, I had one of my periodic wobbles where I decide that everyone is pointless and interacting is nothing but a massive chore that injures me (And really, what DO we get from talking to each other?) I had a massive scrap on one of my forums- A forum that I’d semi-left a few months ago after a LOT of transphobia from a Good Feminist anyway -with someone who just wanted to attack some friends of mine for no good reason. I then had a further scrap on Twitter with someone who was being rampantly disablist, and insisting that she couldn’t be being a reactionary self-centred shitheel because she had EDS; Something which I, obviously, would never understand. Realising that there was no point in talking to anyone if I had to lead with my gender, sexuality and diagnosis to be listened to, since I prefer my arguments to be well-crafted and listened to on their merits, rather than istened to because I’m suitably oppressed, and gave up on Twitter as well – So I’ve basically cut contact with four years’ worth of good friends, this week, because they were too tightly wrapped up with the kind of selfrighteous point-scoring arseholes that I don’t want to have to deal with anymore.

Then Tuesday was CBT for pain – That thing I’ve been waiting for for more than a year. And it was, well, a bit useless. or at least, it looks like it’s going to be a bit useless. The problem is, it’s well set up for people who are scared of pain, and limited unreasonably by it, and not set up well for people who have mentally reclassified pain-that-doesn’t-damage-much as “Not pain” for the purposes of getting things done. I think I’m going to end up spending a few weeks reassuring the therapist that my coping strategies whilst in pain (Other than using self-harm as a painkiller; Explaining “Sometimes I dislocate a finger as a distraction from the pain in my hips” wasn’t fun) are basically fine. I’d forgotten how little I like talking therapies – I’d, naively, hoped that my “I don’t want to talk to people” instinct wasn’t going to carry over to talking to doctors. So, after an hour of talking about pain and trying to teach that there was a difference between “I can’t do this, it hurts” and “I can’t do this, it’s unsafe” (I think she’s going to try to counsel me towards going out more, regardless of the consequences. I know that that means spending a lot more time healing up big injuries than I really want to. This will be a fun conversation.) I got in a taxi and went to my best friend’s house for dinner and drinking.

By about 2am, my “I don’t want to be here and don’t want to talk to anyone” sense had expanded to include him, but being stuck there by the lack of transport and the snow, I decided to ignore it. All I wanted to do was go home to Dearest and sleep in silence. This is probably a good thing, since by 6am we’d had to ring 111 for the friend, then by 8 we were in an ambulance on our way to the LGI.

The hospital trip is basically his story, not mine, so other than that at around noon, after not having slept for 30 hours, I started to see rats skittering around the corridors, I shan’t say much more. Oh, I aso didn’t eat or drink anything other than a very small cup of tea with sugar in it for the whole day. And my “I hate everyone” meter has basically topped out. Other than writing on here, I’m not dealing with people other than Dearest.

We got home and slept for 19 hours. It was much needed.

Today, I’m wrecked – A day of following the trolley around, pretending to be ablebodied, and doing general packhorse work, has left me with a right hip that can’t take my weight, infrequent hallucinations that are really bothering me, the overpowering urge to self-harm and, unrelatedly, an overpowering urge to kill myself. I’m keeping them all in check by sniping people on musical instruments on Ebay.

Hopefully, tomorrow will be better. Tomorrow had better be better. In a couple of days, I might email/text/PM everyone that I’m bothered about, tell them what’s up, and see what happens. I know that I should want to talk to people. It’s just really, really hard.

Stupidity interlude.

So, I was debating whether to include this or not, since it’s not disability related, but yesterday I got literally the best A+E care I have ever recieved in my life.

And it was over stupidity. Or rather, it was over using a product *exactly* as the manufacturer intended, and then my own weird biology causing problems.

The problem was, as you might have guessed, a kegel ball.

I love kegel exercisors. I find them extremely soothing and stress-relieving, as well as occassionally arousing and generally good practise for sets of muscles that don’t get much use otherwise. I have several sets of them – A silver plastic “jiggle” pair that I never use, due to them being so badly constructed (Really, a woven cord on an insertable toy? Breeding ground for infections. Use once, then relegate to being a cat toy), a weighted silicone and ABS pair which looked too much like a dead mouse for me to use, and this pair – Two glass eggs in a silicone harness, sold with the instruction that they could also be used without the harness. And, in fact, kegel exercisors where all you get is two spheres/eggs, and nothing more are pretty common. So trying them out for the first time without a harness wasn’t exactly a silly idea. And using them without the harness was, I found, a lot more comfortable and pleasant than using them with a harness. I could move around without worrying about the semi-rigid connector between them pushing them into the wrong place, or the external strap catching my external bits.  And basically, I could suck on them like they were boiled sweeties. This was good.

So, time passed and I decided to remove them. One quick “Thloop” and I’d got the first one pushed out. Waited half a minute, then tried the same trick with the second one. No luck. Reached up to look for it – Can’t find it , even with a fingertip. Try squatting, pushing, jumping, stretching, jogging up and down the stairs and phoning friends in desperation to get it out.

No luck.

Further investigation eventually finds it, stuck up around a corner and three-quarters buried inside a muscle that won’t let it out. Attempts at getting it out with two fingers just results in two dislocated fingers and a dislocated wrist.

Partner gets home, by which point I have taken enough diazepam to turn an elephant in musth into a purring kitten, and with pelnty of lube and reassurance, he tries to get it as well. He manages to make it spin in place, but not to go anywhere. We have a bit of a giggle whilst doing this for the length of two episodes of Frasier (Including him picking me up and shaking me like an errant piggy-bank) and then finally give up. It’s now midnight, and I’m off to accident and emergency at St J’s, because I know they’ve got a really good gynaecology department if everything goees tits up.

I get settled in, (Everyone is remarkably nice to me and not mocking at all, desoite the fact that I feel like the adult version of the schoolboy that’s stuck a marble up his nose and now has to get help to get it back out) and by about 1am, I meet Dr Daisy (Not her real name, but since I’ve not met her before and probably won’t again, she’s not getting included in the usual initial-only naming scheme, since that’d confuse the issue). By this point I am in a LOT of pain. Cramp is starting to set in, and my hips are variously dislocating and spasming, along with everything else. I take a few more shots of morphine, and am offered a diazepam. And then, once it’s set in, over to the room with a proper door we go. Plastic speculum, warm bowl of lube.

And Dr Daisy doesn’t even bat an eyelid when I say “Can I do this myself?”

She just happily sits and directs, telling me when she can see the ball, telling me if I need to go left or right, or push in further, or rotate the speculum to get the blade underneath the ball, or angle it slightly differently, or open it further. Every few minutes, I get her to hold the speculum still, to allow me to relax my hands and fix them. After about half an hour or so, I feel a click. She tells me to try releasing the pressure on the speculum – It doesn’t close; It’s gripped the ball! Slowly, slowly, out it comes. She looks about as delighted as I feel. Freedom!

And that, my dears, is how you conduct a medical procedure. You trust the patient, you help them to solve the issue on their own, and you don’t dive in speculum-first and demanding things. This was a lot quicker, a lot easier, and a lot less traumatic than it could have been. And I got my ball back.


So yesterday turned into an accident and emergency day.


Right hip jammed and tore at about 11.00, phoned 111 at 13.00, had a paramedic standing over my bed and administering IV morphine by 14.00, picked up for transport to the LGI by 16.30, checked in by 16.45, saw a doctor by 19.30 and was home by 20.00.


Honestly, just being kept warm, on a soft bed, and under supervision was probably all I needed. Both the consultant and the first paramedic confirmed the dislocated hip, and have expedited my rheumatology referral. This was the kind of A+E visit which reminds me why I have faith in the NHS – Everyone was professional and understanding, and genuinely listened and respected that I knew as much about my condition as they did, and tried to find sensible solutions.


This does, however, mean that I have to make an appointment with the GP, a task which is basically impossible. And I need to get back to complaining about them to the Ombudsman.


There’s something very wrong with a world in which a disabled person;

-Is scared to go to their GP, becuase the receptionists will stop them from getting an appointment and verbally abuse them, and one in three GPs at the surgery is actively hateful

-Is scared to call an ambulance, because the paramedics in the past have told them off for not keeping their house clean and insinuated that they mistreat their dog

-Is scared of A+E, due to having been manhandled by rude and dismissive consultants to the point of injury

-Is scared of getting more physio, due to the remaining physiotherapists at the local service being distinctly unsympathetic to anyone with a long-term condition

-Is scared of phoning 111 at all, after the time that they were put through to a nurse who berated them for being depressed and told them that they weren’t ill enough to be sad.


It’s not exactly looking good for my local services, right now.


On the other hand, the NHS has the most comfy blankets I have ever encountered.

What on Earth are you doing, Percy?

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

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

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

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

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

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

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

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

I am in so much pain right now.


Current treatment status;

Physio: Discharged

Rheumatology: Discharged

Hypermobility Specialist: Referred

Occupational Therapy: Under care