Two steps forward, one step back

Also, right now I am very, very worried that I don’t have EDS at all, I’m just suffering from a case of one-man mass hysteria and I’ve got nothing wrong with me that a good slap and being told to pull myself together wouldn’t cure.

Possibly precipitated by having had a couple of good days, made some trousers, done my own laundry, and had sufficient morphine to not be in too much pain, and for the remaining (still unpleasant, but more uncomfortable than crippling) pain to be fairly hard to localise.


I promised I’d write about the osteopath visit.

In truth, there’s not much to say – He seems like a nice boy who wants to help, and also he seems really well-informed.

I said that I had hypermobility syndrome, and he outright asked “EDS-type or Marfan-type?” and then knew what he was being told when I said “EDS-type” – He asked if I got the bruising and fragile skin, and if I got just subluxations or also full dislocations.

He was, crucially, sympathetic. He told me of having known someone else who had been treating a Zebra, and how they’d basically just played merry-go-rounds with symptoms. The key thing, he reckoned (before I even mentioned it) would be chasing down whatever was over-tense and in spasm, and loosening it out. Nothing directly on my joints, not faffing with my spine.

He was straight-up honest; “You won’t get any improvement. You might get relief, week by week, but what we’ll be doing is chasing symptoms and picking a bit at a time, and trying to help you through the damage from whatever’s happened in the week before.”

I said that I’d seen a chiropractor before, and that I’d been badly injured by them, and he agreed that trying to do any manipulations (apparently meaning something specific in osteop terms) would be irresponsible and do more harm than good. He asked if physiotherapists had ever used massage or physical manipulation to try to treat me, and I told him truthfully that, other than C who did a lot of touching to correct my posture and A who had seen me long before my diagnosis, so was just treating the back pain, largely by trying to remove my legs one at a time, physios tended to be frightened to touch me in case pieces came off. He looked sad at that. My response was just to shrug, accidentally dislocating a shoulder.

But then he forgot that he wasn’t a doctor – He definitely wanted to push for osteopathy, rather than sports massage, since the sports massage “was too generalist”, and he really believed that osteopathy was the way to help me.

In truth all I need is a bit of a massage, of greater technical competence and frankly force than can be managed by someone totally untrained, but if I wanted something as specialist as what he was claiming to be able to offer, I’d be looking for a physiotherapist.

I can definitely see how someone who didn’t know that osteopathy had a very shaky evidence base would sign up – I’m undecided on whether or not to, since I do love the placebo effect, and I could just about afford this once a month or so – and having someone offer to help, and appear to genuinely care on a professional level, was rare and honestly felt nice.

I’m having to remind myself that the last time I got a massage here – After a nasty crash at roller derby – I walked away with a dislocated shoulder that didn’t sit right for a month. Not the same practitioner, but the same establishment.

But still, tempting.

I’ve talked about placebos before, how using them when you know that all you need to do is to safely switch the nociceceptors to “off” for a while isn’t actually the worst thing you can do (Getting to sleep by counting my beads is much more pleasant than getting to sleep by taking downers, and the former is good enough in about 25% of cases) and I’ve gone on at length about how a self-directed placebo can make things more bearable. I’ve also ranted about how putting the power to deliver that placebo into another person’s hands – Especially the hands of someone who wants to take your money – is a terrible idea.

But I can see why people might want to.

Oh, unrelatedly, my eye test showed that I was very slightly shortsighted:¬† -0.25 sphere in the left eye, and -0.25 sphere, -0.25 cylinder and 100 axis in the right eye. So basically negligibly wrong, but I’m definitely not wrong to think that things are now blurrier than they were. I’m tempted to get very cheap glasses anyway, to see if I’ll actually wear them and if they actually help.

Oh, and tomorrow I’m going to see my family for the first time in nearly a year. Wish me luck.

Escape from Beltane

0.00 – Midnight, 26th of March. Happy Not-actually-an-equinox-but-close-enough, me!

00.21 – Off to bed with a sore back and 20mg of morphine.

01.35 – Wake up with left shoulder subluxed. Repair.

3.11 – Woken by back pain, left shoulder subluxed again.

04.49 – Woken by left shoulder sublux, realise right wrist is subluxed whilst repairing it.

06.30 – Woken by alarm. Inventory – Left shoulder totally disassembled (ended up sleeping on it), right clavicle subluxed at both ends, right wrist dislocated and immobile, hand cold. Repair wrist and shoulder, sling right clavicle, back to sleep.

07.24 – Woken by back pain, both in slipped discs and pelvis, which feels like it my have an internal sublux. 10mg morphine, morning medication.

09.12 – Must have fallen back to sleep, woken by left shoulder dislocating. Pain in right hip starts up with a vengeance.

10.01 – Right wrist subluxes whilst typing.

10.40 – Right wrist dislocates whilst cooking breakfast.

10.42 – Right hip subluxes, causing fall and dizziness/confusion, whilst cooking breakfast.

11.21 – Right wrist subluxes and goes into spasm whilst eating breakfast. Back pain becomes noticeably bad again.

11.35 Right wrist subluxes again, corrected by snapping it back under its own power. Back pain bad enough to consider morphine, in order to get through errands.

11.57 – Right shoulder “drops” whilst sitting up from chaise longue – Glenohumeral separation, trapezius goes into spasm. Take morphine, consider diazepam.

12.00 – Right wrist sublux whilst opening morphine bottle.

12.30 – Right hip sublux in shower.

13.01 – Back pain intense enough to cause crying. More morphine, prepare to leave the house.

13.09 – Right glenohumeral joint. Shrugged back into place.

13.24 – Back spasms whilst at osteopath.

13.31 – Full clavicle dislocation on left hand side whilst at osteopath; manipulated back into place.

13.56 – Full left shoulder dislocation, due to wearing a heavy jacket. Left it dislocated for remainder of trip out.

14.22 – Wrist sublux, right, whilst waiting to see optician.

15.06 – Back pain necessitates brief break in getting eyes tested.

16.15 – Pelvis and hip sublux, with spasms, on the way home. Reset via good muscle control. Lots of pain.

16.34 – Nearly vomit from back pain.

16.35 – Distracts self from back pain by manipulating dislocated right wrist and dislocated left shoulder. Neither actually reduce the dislocations. Hurts more.

16.59 – Right thumb joins the party, due to holding a spoon.

17.24 – Left hip has evidently been wrong for some time, whole left leg is numb and can’t move. Time for more morphine.

17.39 – Left hip still fucked to smithereens. Right shoulder has fallen out and joined it.

17.53 – Right hip has also subluxed, whilst seated. Attempting to rearrange legs to make the pain less bad has been a bit fruitless.

18.14 – Jaw subluxes, spontaneous.

19.01 – Wrist sublux, again, right wrist. Resets easily. Left hip is still out of socket, an intense stretching pain. Back pain getting worse despite the morphine.

19.26 – Episode of back pain, wrist sublux whilst reading. Resets with some difficulty. Numb feet.

19.30 – Left shoulder apparently still wrong. Ow.

19.35 – Right wrist sublux due to typing.

19.39 – Left shoulder becomes worse. Medial head of clavicle crawling up throat, adding to vague all-over nausea.

20.11 – Right glenohumeral dislocation, needed manhandling back into place. Left still disassembled.

20.33 – Subluxations inside cubit of right hand whilst typing. Much pain. Hot water bottle needed to even think about attempting reduction.

20.50 – Slid down chaise longue, subluxed coccyx. Not currently able to reset it; will need assistance later.

21.09 – Right wrist fully dislocated, making problems in cubit worse. Back pain horrific.

22.15 – Right wrist dislocation, various subluxes in the same cubit.

22.47 – Hip dislocation when standing up. Promptly sat back down.

22.48 – Mysterious grinding and cracking of the neck. Intense pain, sudden silver and red stars, dizziness.

22.52 – Second neck crackle, intense shooting pain all the way down back, suddenly feel better.

22.56 – Left wrist had apparently been dislocated for a while. Fixed with a snap. Sudden shock and pain.

22.57 – Overwhelmed with back, hip, wrist and shoulder pain. Going to bed.


After a full day of sitting in a darkened room and sewing on buttons like  cross between Sisyphus and a Norn, my new waistcoat is done.

One one hand – The shoulders are a bit lopsided. On the other, it’s good enough for casual, good enough for smart if I’ve got a jacket over it, and it solves the “Everyone is sick of seeing me in the same three waistcoats” problem (Purple corduroy double-breasted, blue velvet shawl-collar dress, and grey linen wash in summer).

And, best of all, my migraine appears to be gone. My back is screaming at me though.

Wheels within wheels

Migraine, day twelve.

Actually feeling a bit better, due to the vast quantities of morphine yesterday night – I slept for sixteen hours and woke up in no pain – so today I’ve been making plans.

Firstly – My buttons have arrived, so I can get on with sewing up my waistcoat. They’ve turned out to be ex-Merchant Navy, with the George crown, so they’re not current insignia so I feel fine about wearing them. Need to give them a good polish, pick out fifteen that match, and get on with the buttonholes. Sixty buttons for just under a fiver, so I’m pleased with that.

Secondly – Booked in for my first ever eye test at three tomorrow, so we’ll see how that goes.

Thirdly – Booked in for a free fifteen minute consultation at the painvultures’ at 13.30 tomorrow. I was deliberately vague on the phone; I said that I have all-over joint pain, including my back and neck, so they obviously immediately said that I needed an osteopath. The receptionist was, however, very careful about not suggesting that osteopathy would cure anything.

If the osteopath doesn’t take one look at me and say “No, this would be dangerous and irresponsible” I am going to be horrified. Obviously, I won’t let them touch me – I’m not actually insane, I know how much damage they can do – but this could be very telling about the integrity of their practice.

If it turns out that they are happy about snapping the necks of the hypermobile, they are going to have Problems.

So, tomorrow should be busy.

Also, having missed the actual Spring Equinox for my Day In The Life, I’m going to do it tomorrow instead, just to keep it close. It’s between the actual Equinox and the start of BST, so it’s close enough.

Between horror and hope

Migraine, day eleven. Getting desperate enough that I would consider drinking the blood of vanquished gladiators to cure it (Apparently good for migraine, epilepsy, stroke and bad headaches according to the Ancient Romans).

After finding and mostly constructing a waistcoat from a kit of parts that I cut a couple of years ago, I’ve been inspired to go digging to see how many other part-built pieces I have lying around, and to work on getting some of them made up. I’ve found a turquoise Regency-looking coat (Can’t tell if it’s a waistcoat, or the fronts of a bodycoat) in the most lovely velvet which I remember being frankly evil to work, a dove-grey woolen waistcoat, missing its back, but otherwise all there, a pair of navy blue wool trousers which I seem to remember had a spiralling problem (so they might get cut up into breeches) and a bundle of very soft tweed scraps which I’ve labelled “Single breasted, no collar” but for some reason is packed as a project and not as stuffs, despite having no structural fabrics with it. Still missing is the green gaberdine dress waistcoat, which I would have loved to find and finish up.

On the other hand, the scrappy tweed looks perfect for the christening next week – Smart, but not so smart that I’ll be devastated if it gets covered in baby sick, and also basically the colour of baby sick anyway – so I’m going to try to cut it a new back and see if I can get it done by Easter. A waistcoat, start to finish, used to be a one-day project (Cut in the morning, seams and collar if needed in the afternoon, pockets, topstitching and buttonholes straight after tea, then hand-sew on the buttons whilst sitting in bed listening to the radio) so I think that two days, to get back into the swing of things, should be about appropriate.

And I need to find my patterns. And my head feels like it’s full of boiling treacle. And I want flapjacks.

Third class coffin

Migraine, day ten, and going back into the visual disturbance/confusion/watery eyes/numbness stage. Can’t decide if this is the start of a new one, or the tail of the last one, or both.

Anyway, I have an appointment for physio at the local health centre on the 6th of May, so that’s something to look forward to. I will probably be the first bendy that they physio there has seen (Being a clinic physio rather than a hospital physio) so this could be really, really interesting.

I am going to continue to blame the migraine on the flashing security light opposite, which has been flashing now since the second week in February.