Nurse Karnstein has been doing this job for a very long time.

Today went really well.

Got up to the phlebotomy suite at LGI at about twenty to eleven, and was immediately in the chair since there was no queue. The first phlebotomist looked me over a few times, noted all the bruises, and picked out two or three veins that she thought might work. First, the deep vein on the left arm (“It’s so tiny, but it’s there!”) then the deep vein on the radial side of the right arm (Which was so deep that I didn’t even know it existed), and possibly one of the “So pretty!” surface veins. Phlebotomists always coo over the glowy blue veins in my arms and chest. They are literally so bright that I was once told off by a supply teacher at school for having scribbled on myself in blue highlighter (Never mind the already heinous sin of having rolled up my sleeves on a warm autumn afternoon), and are completely useless for blood draw, since they’re collapsy and soft. She even had a look at the collapsed veins down the centre of my right elbow, which just have no blood in them at all and are thus dark purple, more for her own edification than for any chance of getting blood from them.

So she called in her superior, without even touching a needle to me, and had a good old complain about whatever cackhanded twat had tried to use 21g needles, when a 23 would be more than big enough. She also got a look of horror when I said that the last time I’d been to the LGI to get blood taken, I’d ended up with needles in my femoral artery. She reassured me that “Only the doctors are allowed to go that far off-piste, we’ll just try the arms then give up”.

Her superior arrived, and the blood draw took about three seconds. She picked one of the surface veins in my right elbow, then gently threaded the needle in, narrating “Just under the skin, you’ll probably only feel a single pop, rather than two…” as she went, and then the blood flowed out neatly in one long tap, filling all three vials. She got the needle back out, taped a piece of cotton wool over the puncture, and was done. No fuss, no faffing, no half-arsing about with the wrong kind of needle.

I was free to go, with the results being sent back to my GP.

I may as well mention now that I really like the phlebotomy suite – It’s in one of the older parts of the hospital, built in 1940, and it looks the part. It’s like a set from Carry On Phlebotomy, with tiny wards and sash windows and endlass narrow corridors. It’s also, apparently, due to be sold off, which makes me incredibly sad, along with the original LGI building (1863) and chunks of SC (1904, former contagious disease centre, Where the pain clinic is). I’m not surprised, since getting the old buildings up to modern standards would cost a fortune, and the part of me that cares about accessibility and ease of maintaining hygiene really likes wide corridors, short transfer pathways and double-glazing. I’m just a little wistful, since the hospital is kind of my second home, and a little worried, since moving services from buildings in the city centre, to either share facilities with other services or to take them out to a cheaper plot that’s further away from the transport hub could cause its own problems. I may start taking photographs of the buildings and wards as I go, to have a record of what healthcare actually looks like right now, as well as what the experience is like.

Though living in a flat in the top of that gorgeous Art-Deco inner ear suite would be bliss.

Bread basket

Today was supposed to be a pelvic, transvaginal and urethral ultrasound. I was, understandably, bricking it.

Two minutes before needing to leave the house, I phoned Best Friend in a panic, feeling like I weighed half a tonne and was welded to the bed. By some miracle, he got me convinced to put on real trousers, pack a bag full of sensible medications and literature, go downstairs, and let Dearest shovel me into the car.

I arived at StJ, with Dearest, and got along to the near-empty ultrasound suite. They have refurbished huge chunks of the hospital, and this one was one of the departments they’d not quite reached yet, so it was nice seeing confirmation that the contrast between the “old” bits and the “new” bits really was as big as I thought. Not just newly-colour-coded walls, but also better signage, brighter, more diffuse and warmer lighting, more comfortable and flexible seating and more of what I’d call “passive entertainment” – Paintings on the walls, well-stocked fish tanks, facts about local history and wildlife. This particular waiting room had a couple of plastic chairs, a very sturdy vinyl sofa, and a notice saying “There were many educational posters in this ward which patients found distressing and frightening. The posters have now been moved to a staff-only area.”

Which was a shame, since I like the terrifying educational posters of all the worst things that can happen to a body. I especially like the skin ones, showing the full-thickness diagrams of different kinds of spots, insect bites and rashes, I don’t know why.

Anyway, we weren’t waiting for long, and I went into the usual semi-dark ultrasound room, and quickly necked a couple of diazepam to keep myself from going into messy spasms. I could see the transvaginal probe on the bench, and it didn’t look reassuring (Though in fairness to itself, it did look nicer than a speculum).

The technician got me to lie down on the bench, unzip my fly and roll up my shirt .

She asked if we were looking for a hormonal or a copper coil; The copper coil shows up much more brightly, since it’s got metal parts, so is easier to find. Sadly, we were looking for a hormonal coil, so this could have been a slightly longer process.

First shot was transabdominal, so she quickly lubed up my belly from navel to pubes (very courteously tucking a bit of blue paper into my boxers so as not to completely soak them in ultrasound goo) and started ultrasounding. One or two passes, very firmly, over the bottom third of my abdomen – Asking if I was all right, and keeping me well informed of what she was doing all the way (Including the amazing statement of “Oh, there’s a loop of bowel in the way, I’m just going to nudge it to one side for a minute…”), then pressing down quite hard onto the top of my pubic bone, to see behind it. Each time the machine took a “photo” I felt a fairly strong vibration, like from an amplifier, but that was all.

“Aha!” she said, turning the screen so that I could see it (She’d earlier had to point out to me that if I tensed up my abdominals to lean up and see the screen, I was pushing the wand away from what it needed to scan and defeating the object) “There’s your coil – And right where it’s meant to be as well.” She pointed out a pair of parallel lines on the screen, surprisingly fuzzier than I’d expected, and I was immediately, deliriously happy.

“I don’t need to do a transvaginal, it’s all where it’s supposed to be. I’ll send a letter to your doctor – It must have just been a bacterial infection from having it installed in the first place.”

I have never been so happy to waste a benzo. I dried off, thanked her profusely, and went to the toilets to change into some less-jellied underpants. All in all, the whole effort took less than fifteen minutes, wasn’t painful, was technically interesting to watch, the practitioner was pleasant and professional, and the news was good.

Why can’t all procedures be like that?

Next week is a doctor-heavy week (Medication review on the 3rd, then appointment with Dr L on the 5th) but before that I have my motorcyle CBT on Saturday, then the New Zealand v England test in Headingley on Sunday, and hopefully a night at Best Friend’s house some time around then too. So all is coming up roses at the moment.

Oh, and on the 13th I’m going up to the homelands to look at bikes with an old friend. Now, let me explain this friend; We met when I was working underage in a nightclub when I was 17 (He was 21, but I still IDed him, ironically), and us and our collection of dubious metallers and goths drank heavily every week together from then until I went to university. Upon my going to university, we met up every couple of months (with the key date being New Year, wherein we would all pile back to his best friend’s ground-floor flat overlooking the quayside and sleep in a pile in the living room, leaving one-by-one through the front window after sunrise then walking back across the river to go home) and then once a year, and then eventually (when I moved to japan) not at all. Our last communique had been not long after the earthquake – He’d been intending to visit me in Tokyo, but Japan running a skeleton service made it less immediately practical. So that was the last we heard of each other.

A couple of weeks ago, I got a text out of the blue asking if I wanted a night out in the homeland. It had been sent on Saturday night, and I picked it up on Sunday morning, so I just laughed it off and replied with “Yeah, if I’d had more notice.” A couple of texts passed back and forth until he asked “Hang on – Which [Old Nickname] is this?” My response was “The [Old Nick] who lives in Leeds and you’ve not seen in half a dozen years.” Seconds after the I put down the phone, it rang, and i was greeted with a delighted “HOLY SHIT I thought I’d lost your number years ago – How’ve you been!”

We caught up, reminisced, and lo, we’re going for a night out on the lash in a few weeks. Despite all of our old haunts being long-gone, there’s the rumour of a new metal night starting up and one of our old pubs reopening. And then on Sunday, probably exhausted and carrying him through a hangover, we’re going bike shopping.

Predictably, probably, I’ve glossed over the EDS. I suspect he will assume that a life of hard work, hard drinking, hard knocks and hard luck has just caught up with me. But that’s a bridge to cross when I get to it.


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.

Tiny glasses

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

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

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

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

“How far is it?”

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

“Yes, but how lng is the corridor?”

“Not long, just around the corner.”

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

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

Do not be evasive when talking about distances, really.

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

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

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

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

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

We were back home by about four.

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

Getting out the tape measures

A post of two halves, really.

First, I have just got back from a swim in which I clocked in a <6m 400m and a ~15m kilometre. Ended up sharing a lane with a bloke who just outclassed me, like a xebec outclasses a sloop, and trying to keep pace. I failed, obviously (He had youth, strength, and a complete lack of ehlers-danlos on his side) but I felt so much better for at least not completely embarrassing myself out there.

The second part is that today was my spinal MRI at CA.

Wandering through the usually-busy hospital, and finding it completely empty but for two radiologists in one tiny department in one tiny corner of the building was frankly eerie. Even on quiet times during the week there’s reception staff at the desks, or porters and cleaners going about their errands, but today, being a Sunday, there was just the dull hum of the lights to break the silence. Main reception was closed, the automatic admission terminals were switched off. We navigated down through the halls into the tiny annexe containing radiology, Dearest being far less perturbed by the empty hospital than I was.

Upon getting to the MRI suite there was a card on the front desk saying “Please use the phone provided to ring extension 35XXX when you arrive, and fill in one of the questionnaires on the clip boards. All the staff are busy right now.”

I was delighted by this. This was efficiency as I enjoy it – All the staff present being MRI technicians, and no disclosures to non-essential staff. I phoned the number and got a rather sweet “Great, see you soon, you’re up next!” then filled out the questionnaire which confirmed whether or not I was a cyborg and about to break their magnets.

For future reference; Titanium body jewellery is perfectly safe to wear during an MRI. I took out anything that I couldn’t guarantee the provenance of, replaced a few things with plain titanium BCRs from my piercer.

Anyway, I was taken through to a cubicle, where I took off anything that had metal in it (Jeans, shoes, hoodie) and put all of my clothes and things into a plastic shopping basket, which one of the two technicians took through to the MRI anteroom for me. I put on a gown and padded along after her in my bare feet, clutching a copy of Reise Reise and a bottle of morphine.

I’d decided to pre-dose myself with plenty of morphine and a diazepam before getting into the tube, to allow myself to stay still for longer more easily. As is the case with EDS, lying still – and especially lying still in a position that I didn’t get to choose for myself – was going to be a problem, though exactly what kind of problem I wasn’t certain of (there’s so many to delightful possibilities!)

I was given a pair of headphones, a squeezy panic button, a pillow for my head, and a support for my knees, then slid into the tube. The machine itself was a delightfully-modern-looking Siemens one, open at both ends to lessen the claustrophobia, with pleasant sea-green glass on the frontispiece; A quick image search reveals that it’s a Magnetom Avanto, known for being both quiet and fast, and operating at a magnetic field strength of 1.5T. I wish I knew more about the physics behind the MRI itself, other than the slightly obvious “There’s a huge electromagnet, which excites the hydrogen atoms in any water-carrying structure in the body, which causes them to emit radio waves. The switching on and off of the coils of the electromagnet allows different types of tissue (with different densities, different positions in the body, and different water contents) to return to a non-excited state at different speeds, making their radio waves look different, which are then picked up by the radio receiver in the machine and translated into an image”.

Most usefully, from the point of view of most people, the Avanto comes with a pair of metal-free headphones, so that you can listen to music whilst in the tube, as well as being able to hear from the technicians without anyone needing to shout. I’d picked Reise Reise as my MRI album, since it’s good and loud, very familiar, and has a lot of thunky mechanical-sounding passages in it, which go nicely with the clicks and whirrs of the MRI.

After about five minutes in the tube (Literally, a few seconds into Mein Teil) my left hip started to scream at me. Not just a dull ache, but an outright burning, screaming, unsettling agony. I wanted to lift a hand to it, crush it, stretch the knee upwards, shift around a bit on my arse… but of course, I was in an MRI machine. I grit my teeth, and bore it. This lasted for about two minutes, until I was squeezing the panic button in a complete mess and begging for morphine.

I was let out of the tube, clutching my leg and making pained noises, and was fully prepared to be called a hypochondriac and a timewaster and an idiot. And I wasn’t! The two technicians were incredibly understanding, helped me stretch out and stand up, get my morphine and my diazepam and offered me a quick break to stretch my legs and let the drugs to their work. I took a minute or two, returning to the table, and this time had them strap my legs so that I didn’t need to keep hold of them on my own. Back into the tube I went, to find my CD was now halfway through Dalai Lama.

There were three sets of images taken, and after every one the tech paused the CD and told me that she’d finished another one, keeping me updated on the progress and giving me good estimates on how long each image would take.

I’m increasingly feeling that MRI technicians have really taken the “Patient experience is important” part of healthcare provision incredibly seriously. I can’t think of a time where I’ve been treated by anyone in the healthcare services as if I was on a very good airline, rather than being treated a bit like I was either a fascinating geological specimen, a much-loved but still stupid Herefordshire bull, or a drug-seeking twattock. Effectively, this was like taking a train journey in first class, or an intercontinental flight; The two techs were nice to me, professional, efficient, and put both comfort and precision on a high priority.

By the time the CD was halfway through Los, the scan was all finished. I asked if I could look at the images, and was shown them with some interest; Of course, they couldn’t interpret them, but I was allowed to have a look anyway. I was fascinated by how asymmetrical my back muscles are (and by how little fat there is between them) and by how the vertebrae were so big and chunky – I have very short, very fat vertebrae. And a very curved spine. And a very thick spinal cord, which might have had a syrinx, but I can’t really tell since I’m not an expert. If I can get a copy of my MRIs for the blog, I will definitely do it, because they look awesome.

I got dressed, and was told to book a GP appointment around the end of the week to have a proper look at the results of the images, and their official interpretation.

I’m now really, really curious.


Today was… Surprisingly not that bad.

Made it on-time to my appointment, only to have the reception staff tell Dr G that I’d gone for a coffee and delay my appointment by an hour – I was sitting reading my book the whole time, in the corner of the waiting room. He was incredibly apologetic when I got to the consultatiion, despite it not being his fault.

We talked for a while about my options, and elected to try fitting it there-and-then, no anaesthetic, no sedative, no waiting. He was irritated that my GP had suggested he could have me sedated there, but was happy to defer to me on the non-use of lidocaine (As was his repeated refrain; “It’s your body, you’re the expert, I just have to listen because you’ll tell me what the right course of action is.”) and was also happy to sign off on a general anaesthetic if I couldn’t get it fitted there and then.

He left the room, I stripped below the waist as-instructed, was handed a stress-ball shaped like an ambulance by the nurse, sat down on the table and promptly burst into tears. The nurse, talking me out of crying and gingerly patting me on the foot suggested that I might be better off with the general anaesthetic, and also probably a large cup of tea.

I promptly made things worse by assenting, standing up to get my clothes back on, and dislocating a hip, flinging myself face-first onto the floor and smashing my nose on the corner of the desk in the process. By the time I was back in my trousers my head had stopped spinning and there was a cup of black tea in my hand, so something must have gone right.

Dr G returned, booked me in for a general anaesthetic at some point “As soon as possible”, whilst also brushing away my apologies with more “No, really, I wouldn’t want to risk hurting you, we did the general anaesthetic last time and it all went really well so we can do that again.” and then sent me over to pre-operative assessment. Pre-op had a slot at 13.20, so I spent the next two hours reading and drinking coffee in one of the big airporty-looking lobbies that StJ is so good at, then went back up at 13.00 and was seen by 14.00. I’d have a letter within ten days, and would hopefully be re-coiled by the end of March.

And then on the way home the bus driver threw me down the stairs, then got snappy about it and insisted that there was no complaints procedure. So I’m going to have to have another fucking fight with the bus company.

Weigh-ins and how hard society fucks us up.

Before going into rheumatology, I had the usual blood-pressure check (124/90, high because I was in so much pain by this point already) heart rate (85bmp, again, pain) and weigh-in.

I spluttered when the nurse told me my weight, and she immediately tried to console me; “Oh, that’s not that heavy, I mean, you are very tall!”.

I did the maths in my head. “That’s just under nine stone!”

She loked at me blankly, then smiled.

“See? Not bad.”

I twitched. “I’m five foot nine. I’m supposed to be about ten stone. I’ve lost a stone, without noticing it. And that was my weight in  a leather jacket and assault boots.

“Ooh well lucky you then, even lighter! You can knock off a couple of pounds for them as well!”

On reflection, this may have been when my uncontrollable eye-twitching started. How have we reached a point wherein everyone is supposed to want to lose weight, even if they’re waking up ravenous in a haze of ketones every morning, and haven’t had a full meal in days? How is it that, even though if the nurse had really looked at me, it’s obvious that I’m underweight and suffering because of it, her automatic thought was that I must think I’m too fat and to try to console me that I can always be thinner?

Below the cut is a, probably fairly disturbing actually, photograph of me as I’ve been all morning – Naked but for my boxers, basically immobile. [spoilered for people who just wanted the commentary, and not my self-indulgent whine].

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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.

Please rate the truth of each statement as it applies to you.

I left CBT for Pain last week with two pieces of homework. One was the familiar HAD depression/anxiety sheet (Do you feel this always, often, sometimes, or never?) and the other was something I’d not seen before called CPAQ, which was (According to its own footnote) from – I can’t find it on there though.

It’s twenty statements, which you rate with a number from 0-6, where 0 is “Never true” and 6 is “Always true”, and there begins the problem – There’s not very much that I’d describe as being always applicable with EDS, other than perhaps “I have to keep explaining what it is”.

The first statement sets the tone of how misjudged the whole sheet is, for someone in my position;

“I am getting on with the business of living, no matter what my level of pain is”.

Hmm. That could be a 5; I almost never factor pain into my calculations about whether or not I want to do something. Or it could be a 0; I’m really not getting on with the business of living very well, I barely go to work and I’m too exhausted to maintain more than the most minimalist of social relationships. I could call it a 3, to represent that it’s more complicated than that, but that would suggest that I vacillated about whether to get on with life or not, and thus that maybe all I needed was to be pushed towards embracing life a bit more. The second statement; “My life is going well, even though I have chronic pain” falls into the same trap. My life is pretty terrible, actually, but the pain is only a small part of that problem.

Like most talking therapy worksheets, a lot of the points are repeated and re-worded several times; 1 and 2 are effectively asking the same thing, and also share a central theme with 5, 6, 9, 10, 12, 15 and 19. They all roughly ask “Do you stil have a normal life, even though you’re in pain?”

3, 4, 7, 8, 11, 13, 14, 16, 17 and 20 all ask variants on “Do you put off doing things until you’re not in pain, or do you believe that if you could control your pain better you’d do more with your life?”

Leaving only 18 – “My worries and fears about what pain will do to me are true” as a unique question.

So, let’s answer all three, before going to see the therapist tomorrow;

“Do you stil have a normal life, even though you’re in pain?”

No. Christ, nowhere near. That’s not the fault of the pain, though. I have to be cautious with my exertions since I have joint hypermobility syndrome, a condition in which “But it’ll hurt!” is basically always the least of my worries. I curtail my activities sooner than I’d like to, and plan to do less than I’d like to, at the advice of the consultant at the hypermobility clinic, and at the reiterated advice of a specialist physiotherapist. Working up to the point that pain makes me want to stop usually means that I’ll have done long-term damage to my joints, and that I’ll have negated the beneficial effects of the exercise; If I swim for twenty minutes, I’ll feel like I’ve done nothing, but will have given my muscles an appropriate amount of exercise. If I swim for two hours, like I want to, I’ll feel tired out and good, but I’ll be so tired that my muscles will be unable to hold my joints together properly, and I’ll be at greater risk of injury until I recover – Or I’ll have injured myself whilst swimming anyway.

In a similar vein, when I go out for my own entertainment, I have to plan carefully in advance; I have limited mobility, not because of pain, but because of weakness and instability in my joints, and also because of the fatigue which comes as-standard with EDS. As such, I have to be very careful. If I don’t know how to get home from an event, I can end up stuck at the venue – I can’t run for a bus, or even get a bus much of the time, and being trapped somewhere, getting cold and fatigued and immobile and usually hungry, is a recipe for damage. If the problem was pain, I’d not end up stuck in coffee shops at the end of the day. The problem, in this case, is fatigue and muscle weakness.

“Do you put off doing things until you’re not in pain, or do you believe that if you could control your pain better you’d do more with your life?”

Yes, and no – I’ve been taught, by physiotherapists, rheumatologists, specialists, and just plain experience, that pain is often a fairly simple signal that I should be doing things more slowly. As such, I’ve been mostly persuaded that when I’m in a certain kind of pain, I should just lie down and wait for it to pass, perhaps whilst doing something to pass the time – Watching a film, writing a story, reading a book, maybe doing a little sculpting if I feel well enough. This is also fairly closely related to the mantra of “Take the morphine and count to three hundred”; Three hundred seconds is about how long it takes for the first effects of oral morphine to take effect, and reduce a pain from mind-numbing to bearable.

When I ignore this kind of pain, I usually end up being limited instead by the muscle weakness or joint destabilisation that it proxies for. This, of course, means that if I ignore this sort of pain, I’m often left dealing with the consequences in a less-than-optimal situation; Instead of paying attention to the first twinges and taking my painkillers when safe and warm in bed, I can end up having to try to go through the five minutes of horror as the morphine takes effect in a public place, resulting in either needing a lot of help from members of the public, or ending up needing several days of rest afterwards after brute-forcing my way to safety.

I believe that, in order to do more with my life, I would have to have more control over the problems which cause the pain. Ignoring pain, as I feel it, is irresponsible and not helpful.

“My worries and fears about what pain will do to me are true” – True or False?

True, generally. I usually don’t fear pain for its own sake, however I feel intense frustration with the loss of function which has come with it.

I fear that nociceptive pain left unchecked will result in muscle spasms – which it does – which can damage nerves and connective tissue, restrict blood flow, tear muscles, and in the absolute worst cases snap bones. I fear that untreated nociceptive pain will result in neuropathic pain or allodynia, which it can.

I have a terrible suspicion that I’ve done this wrong. That the whole point of the exercise was supposed to be to make the patient say “Oh, silly me, pain is all in my head!” but since that would be an undoing of everything that a team of a dozen professionals have worked towards for the past seven years (trying to get me to see that, often, pain is a reasonable response to something that is doing damage, and should be heeded as a warning) I’m not going to do it.

Onwards, to tomorrow!