So, a few days ago I posted this deliberately-upsetting video to YouTube;



Which quickly got found by a big Dr Blog, cranquis.tumblr.com, ran by an American medic called Dr Cranquis (It’s very good, he’s very funny and obviously a very good doctor too).


And this in his response made me jump out of my weird, stretchy skin;


“When EDS is taught, the emphasis usually is about the plasticity of the patient’s connective tissue, the genetic transmission, the “double-jointedness”, and the risk for blood vessel ruptures. There’s always at least one old-timey picture of a “circus Plastic Man” stretching his neck skin way out, for some reason. But while the “easy joint dislocations” are mentioned, I don’t recall anyone emphasizing the (obvious, in hindsight) risk this would create for excruciating pain.”


Because this exactly reflects the complaint that I keep making; Medical teaching programmes and textbooks, when they go into EDS at all, always emphasise the visually-dramatic. They go for the most obvious even-my-dog-could-tell-you-that’s-luxated luxations, the stretchiest stretchy skin, the most pronounced micrognathia, enlarged orbits, and visible veins and the most extreme weirdly-proportioned habitus. And they take the photographs in such a way that they show up the criteria as much as is possible, foreshortening and back-lighting and putting in perfect profile, whilst twisting the limbs and fingers around into the most extreme examples of the Beighton warp.


So doctors learn by seeing the most blatant, and not the most common, cases. They don’t see the tall girl with long fingers who’s always clutching her back in pain but insists that it’s just overtraining. They don’t see the boy with huge blue eyes, whose hips click a bit when he walks but in ten years’ time he’ll be in a wheelchair. They don’t see the rugby player that keeps “popping” their shoulders whenever they stand up from the scrum, that lives in a constant cloud of Deep Heat and freeze-spray. They definitely don’t see the forty-year-old with visceroptosis and a uterine prolapse, but otherwise no symptoms other than sore hands that they put down to old age. They see the depressed teenager who can’t eat, who claims to feel full after two bites of a pasty, and has a drawerful of laxatives, and they insist that it’s an eating disorder even when he cries over how thin he’s getting. They see the toddler with fist-sized bruises, and they call social services, and refuse to believe that they really do just keep falling over and that the parents are just as worried as the doctor. They see the pain episodes, like the one above, and say that it’s drug-seeking, psychosomatic or exaggerated, because EDS is just that thing that makes you a circus freak, isn’t it?


We need some kind of campaign that says that the reason that a lot of people don’t see zebras is because we look and sound basically like stripey horses.


Just got my letter confirming a rheumatology appointment, really soon – 9.30, 1st of February, at StJ… And not with Dr D. With a Prof McG, whom I don’t know.

Part of me is immediately terrified. Even though I’ve never met a bad rheumatologist (And I’ve known plenty – Dr D, Dr W, Prof A at UCLH, a few dozen locums (loci?) it’s always scary meeting a new doctor, especially one that I expect to have a long relationship with. I’ve seen Dr D four times a year pretty much since diagnosis, and he really understands me as a person, and follows my condition. He’s gone above-and-beyond more than once for me. He isn’t just “good”, he’s brilliant. I’d put him up there with Mr Gb, Dr DM, Carmilla, and a tiny handful of others for “Medics whose judgment I trust entirely, and that I immediately feel safe around.”

But here’s hoping that someone who’s in the same department as produced Dr D and Dr W is going to be just as good and caring.

On the bookings front – It would have been nice, though to have been asked when I was free, not just thrown an appointment early in the morning, next week, with no hope of getting someone booked up to take me. I don’t think I want to go to my first appointment with a new rheumatologist, and arrive in bike leathers and sweaty, having driven through rush hour in awful weather. it gives the wrong impression.

No Ball Games

I have a flaming migraine, again. Third one this month.


My right shoulder once again feels like there’s a hot petanque ball stuffed under the scapula. My right hip has exploded.


And about a week ago, I woke up feeling as if I’d slept on an electrical plug, pointy-side-up, right at the base of my spine. At first, I thought I really had – Under the pile of sheepskins and cushions and cashmere throws on my bed, there’s an electric blanket, and the blanket has a big square lump where the wiring is attached. Sometimes it moves around the bed and ends up under some part of me, and I end up with a minor cramp wherever it dug in. This hurt a lot more than usual.


This time, I reached around to feel for the plug, and instead of finding it I found the usual three-inch-thick pad of fleece, and my own coccyx, which was sticking out at 45 degees and so much as touching it felt like the evil version of slamming your elbow into a doorframe. I flipped onto my side, lifted up my knees, keeping my back board-straight since I couldn’t move it without intense pain, and started howling.


The howling brought Dearest out of the shower, who quickly poured the remains of a bottle of morphine down my throat, fed me 4mg of diazepam, 75mg of diclofenac, and managed to get at least one of my legs straightened out and the other supported on a cushion, so that I could relax in place. Half an hour later, I was relaxed far enough to reduce the luxation at least partially, and then half an hour later I reduced it a little bit further, then again, and again, each time the inflammation pushing it a little way back towards a luxation, and each time my work putting it back a little bit closer to “correct”. Two steps forward, one step back. Pain. Pain. More pain. That afternoon, I phoned rheumatology and was told “They’d get back to me in 48 hours”.


A couple of days later, still trapped in bed, Best Friend and Best Friend’s Mum came over for the afternoon to look after me, with Best Friend holding my hand, occassionally massaging the worst of the cramp out of my spine, and generally trying to keep my mind on the cricket and the thought of going on holiday, and off the burning pain in my back. By this point, my shoulder pain had reached the point where I was having to breathe in between shots of pain, which was understandably making me tense and twitchy. Meanwhile, Best Friend’s Mum made me hot water bottles, found cushions to stack my limbs up with, fed me, and washed the dishes so that I’d have something to eat off later.


A couple of days after that, still in bed but starting to shuffle around a bit now, Dearest spent several hours and a lot of diazepam working the spasms and cramps out of my back and shoulders, almost managing to get the right shoulderblade (the one with the white-hot petanque ball under it) to lie flat for a couple of seconds. My tail, by this point, lay almost completely flat to where it belonged.


And now it’s today, and I’ve finally got through to Rheumatology, who aren’t even at StJ anymore, they’re at CA. Dr D will see me at some point in the next month, for my regular appointment, but moved forwards as far as he can because this is fairly serious stuff. He’s had his hours cut, and thus also his number of patients cut, but as far as anyone can tell I’m still one of his.


I’m just about hobbling about the house now – Not well, or with any grace, and still only by taking literally as much morphine as I can tolerate (Having had the last of the diazepam earlier in the week, because obviously I am better off having violent, painful spasms than taking a naughty drug that some people might sometimes enjoy taking for fun) and doing as little as possible Tomorrow, the glazier is coming over to fix one of the window handles, then in the evening I’m taking Dog to the vet’s to get his ten-day checkup for his teeth (He had sixteen teeth removed last Monday. It was a terrifying day for both of us). After that, I’ve got broadly nothing to do until Saturday morning, when I in theory have a univerity tutorial.


Judging by the stabbing pains in my shoulder that’re continuing without respite and making it hard to breathe, I’ll probably not be going anywhere. Oh, and somehow during this hellish week, I’ve managed to finish my own essay for my second TMA and write one about “My EDS experience with reference to using the Internet for support” to be a piece of primary material for someone else’s PhD, which is rather fun. And she’s in the North too, so it’s nice to have met another northern zeb.



How Is Gender Like A Motorcycle?

Well, the big difference is that a motorcycle is generally sited between your legs, so let’s get on to the similarities;


  1. Everyone who has one can’t understand how people get on without them.
  2. Everyone thinks that their own is the best and most comfortable, even if it would feel totally wrong to other people.
  3. Everyone is far more fascinated by their own than by anyone else’s.
  4. They’re lovely if you have one, but most people that don’t have one don’t see the appeal, and definitely don’t need one forced upon them by a third party.
  5. It’s possible to have one that is just a utility thing, and it’s possible to have one that’s your whole lifestyle, or somewhere in between and both is fine.
  6. On some people, you think they really suit them, on others they’re quite incongruous, but it’s still theirs and it’s not your place to give your opinion.
  7. Having one makes a lot of stuff easier, but can paradoxically make some things harder too.
  8. Some people wear special clothes related to theirs, but others don’t bother.
  9. Sometimes passers-by will get quite aggressive with you about them, even though it’s really not their business.
  10. Anyone saying “I don’t care about it, I don’t see it or think about it, I just see YOU” is at best missing a crucial bit of information and at worst lying.


…I’m rather pleased that I made it to ten.


Feel free to add more in the comments if you think of any.

A Day In The Life: Late as ever

I’ve been such a mess of anxiety this winter that I’ve managed to miss the equinox, Christmas, and New Year as days for DitL, so I’ll do it on the day we’re closest to the sun instead (2nd of January).


00.00 – Happy Not-an-equinox-but-the-day-that-the-earth-is-closest-to-the-sun!

01.45 – Right hip luxates momentarily, starts hurting more than everything else.

3.08 – Take herbal sedative, evening morphine, diazepam, dicofenac.

3.13 – Right hip pain increases.

4.00 – Fall asleep.

09.30 -Woken by post. Go downstairs to collect parcel, find that it’s only letters. Luxate hip in process.

09.40 –  Return to bed, suddenly both fatigued and full of pain-based adrenaline. Fail to get back to sleep, but must fall asleep at some point.

11.50 – Woken by post again, this time it’s the parcel. Limp downstairs in already terrible pain, again.

12.00 – Broken fibula starts twinging badly whenever I move. Establishes that, despite everything, it’s still broken.

14.01 – Go for a shower. Collapse onto shower seat, both shoulders luxate. Attempt and fail to reduce both.

14.05ish – Attempt to wash hair, fail.

14.28 – Get out of shower with much difficulty, get into bed. Hips, back and shoulders absolutely burn.

14.30 – Intense back pain overrides everything.

14.42 – Right wrist luxates. Immediate reset.

15.04 – Right shoulder luxation. Scauplua wings suddenly. Feels like clavicle is climbing up throat. Lie down flat on back.

15.08 – Left wrist luxates. Partially reset, lie back down. Switch on electric blanket.

16.00 – Wake up, must have fallen asleep. Right hip absolutely screaming. Take morphine.

16.40 – Apply TENS machine to lower back. Read instructions for homework.

17.14 – Right shoulder still winging. Dislocate right wrist trying to reduce it.

17.15 – Attempt to reduce right wrist, fail.

17.26 – Right knee goes off like a bottle rocket.

17.34 – Right elbow interacts with power pack of electric blanket whilst typing, luxating the lateral head of the clavicle on that side. Pain shoots down through the whole chest.

17.35 – Realise that half of the rib are subluxed on the right hand side, from the spasms. Despair.

17.44 – propped up on one elbow. Right shoulder completely collapses in on itself.

17.53 – Back pain turns over again so that everything feels like radio static on a cold night.Debate taking more morphine.

17.56 – Left wrist luxates, whilst typing. Doing homework.

18.49 – Achieved nothing, right wrist luxates painfully again.

19.04 – Went downstairs to feed dog. Pain across both shoulders, fatigue and racing heart. Exhausted upon getting back upstairs.Luxated right wrist whilst washing dishes.

19.21 – Whole right leg goes into spasm. Consider morphine again.

19.39 – Head starts to hurt, teeth feel too sharp. Definitey need morphine, but also very sleepy and don’t want to take it. Feel a bit useless due to having done no homework, and just watched Netflix all day.

20.09 – Right wrist needs reducing again.

20.13 – Right glenohumeral spontaneously reduces itself. Had not noticed it was wrong, due to all the clavicle and scapula pains.

20.14 – Stabbing pain through from base of scapula, making it difficult to breathe.

20.48 – Reduce a load of finger luxations. Shoulder pain continues, breating still a challenge. Takes the morphine.

21.21 – Left wrist luxates whilst making curry. Hip pain also gets terrible.

21.25 – Shoulder pain returns when I sit down.

22.03 – Luxate jaw whilst eating curry. Eating curry with a spoon, as hands not “together” enough for chopsticks.

22.57 – Reattach jaw.

23.13 – Right wrist luxates again and won’t reduce. Back, hip and knee pain too much to keep awake, plan to go to bed and lie down with an audiobook.