I’m watching Fry’s Planet Word, and the topic of swearing is the issue of the day; Basically, how people can endure unpleasant stressors for longer if they’re allowed to swear loudly whilst doing so (Cue wonderful scenes of Brian Blessed with his hand in a makeshift cold pressor as featured in Inky’s recent post saying “Wooden”, then saying “BOLLOCKS! and being able to endure the cold for longer when swearing). The idea is that you shock yourself, by swearing, and thus you’re distracted from the pain. Inveterate swearers get less benefit, due to being less shocked, but it’s a much-observed phenomenon.

It’s true, across many kinds of pains. If allowed to flail, swear, scream, shift around, complain heartily and kick things, I can put up with most injuries. If forced to keep within the bounds of good taste, I find myself usually much more distressed by whatever is hurting.


I am currently in the kind of pain where I have to keep within the bounds of good taste. Over the past three months, I’ve been getting increasingly painful cramps and (what looked like) menstrual bleeding. This is not normal for me – I’d not menstruated since 2009, and now this was a constant, painful, ill-coloured bleed. I spoke to my GP, and got examined, a painful, stressful process in its own right. The results were that my Mirena coil had started to expel itself, out through the cervix, and about a quarter of it was visible.

Two days after that, I found the strings, less than three inches inside; The coil had evidently completely exited, and was just sitting outside the uterus, being a massive infection risk. It took an hour to remove, with patience and pain and care and a lot of shaky exhaustion. I curled up afterwards, diazepam doing its good work, and had to let myself be looked after, once again finding myself grateful for the quality of my friends.


So I have an appointment, again. 23rd of February, with the same good gynaecologist as last year (MrGb). It’s only a clinic, not a theatre, so I probably won’t be able to get a full general anaesthetic, but I might be able to have nitrous or similar. I’m scared, but I need my coil back as soon as possible. Being fertile terrifies me. It gives me more anxiety than I can possibly describe. I have never wanted children; Being a parent always looked like a pointless, painful slog, I’ve never got on well enough with other people to be able to risk having a child that I’m likely to just not get on with. I’m rampantly bipolar – I couldn’t care for a child, I can barely care for myself. EDS is genetic, and seems to be closer to dominant than recessive (multiple genes, lies to children version) and I don’t want to damn another human being to the life I have. And, well, my life plans have never involved children. Never, even in an idle fantasy, have I thought about the archetypal house with a garden and a partner and our children.


But, due to my age (barely sub-thirty), even though I’ve been telling doctors ever since I was sixteen that I want to be sterilised at the soonest possible opportunity, I’ve got to go through the humiliation and pain of having a new coil every five years (or less, apparently!) instead of one simple, cheap operation that would save us all the bother.


And I am fucking sick of it. I am in pain, I am bleeding, I can’t get off the settee because my hip has subluxed and swollen so badly that the leg won’t move, and I just want to cry. Bollocks.



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!

Hooves on the ground: Peripheral Manipulation, G.D. Maitland

So, I’m going to start reviewing books that I’ve bought to attempt to manage my hypermobility better.

The first notable thing about the edition of Peripheral Manipulation that I have are the two prefaces; One to the first (1970) and one to the second (1977) edition.

The preface to the first edition begins with “Treatment of painful peripheral joints by passive manipulation has become almost a forgotten art amongst physiotherapists” and goes on to talk about how generally, exercise is a more popular prescription. The preface to the second begins with “Manipulation is now accepted fairly generally as a routine part of medicine.” and talks about a massive sea-change in the practice of physiotherapy. Amusingly, at my first set of physio sessions in 2007 I was treated to a lot of hands-on manipulation, most notably having my pelvis realigned by a lot of stretching and twisting. It hurt, but it stuck. In 2013, on my second set of physio sessions for the same condition, I was set exercises with plenty of touching and correcting and holding parts of me in place. In 2015, my physio set me exercises, but was reluctant to touch me or even look at me.

In short, physiotherapy has fashions, and this book caters to one of them admirably. From my perspective as a patient, both exercises (for strength and conditioning) and manipulation (for relaxation and education of what the correct ranges of motion for each joint are) are really valuable, and although exercises are easy enough to find or deduce, manipulations are much less intuitive.

“Part 1, Theory” is the most important for knowing what and how to do, and for explaining how to assess exactly what a problem is and to put it into clinical terms; It contains a few flowcharts on how to take a patient history and assess the type of pain or stiffness, and explains how to apply a technique at the appropriate level of vigour. It’s a good read, both for working out how to apply the manipulations safely and appropriately to yourself or to another person, and also to understand the kind of guidelines that are appropriate for a physiotherapist to work within.

“Part 2, Joint Techniques and Management” is the bulk of the book, being a collection of ways to move each joint passively, laid out by joint, top to bottom.

The pages for each joint are slightly confusing at first, being laid out acros the double-page spread, rather than left hand page (top to bottom) then right hand page (top to bottom), but that’s more of a minor quibble with how I prefer my iinformation to be set out, and it does mean that paragraphs can be folded up small enough to fit in larger diagrams and their annotations.

Each one starts with a table of examinations, both active and passive, to work out where the pain or stiffness is, and what brings it on. These use a fair bit of technical terminology, which are all abbreviated (the abbreviations are keyed in one of the Appendices) but for a reader who isn’t confident on fairly subject-specific terms for the body plan or movements, it’d be worthwhile to look up the terms online and then annotate; It is a book intended for physiotherapists and students, rather than laypeople, but it’s set out so accessibly that with just a bit of annotation, it’d be very readable to anyone with more than a passing interest in their condition.

What makes it extremely readable is the diagrams – They’re set out extremely simply, with a number of different passive motions per joint, which can be applied as indicated. Each movement is described in detail, around the illustration, with explanations of the method and desired outcomes below it. I found it best to bookmark the ones that I needed most often, and then try them when the joint was not stiff or painful before trying them “in action”.

Of course, this book does not purport to treat subluxations or dislocations – One can’t do any of these movements straight onto a subluxed joint (or if one can, they don’t do what they’re intended to do, and might cause damage) – but I’ve found them to be good for relaxing and settling and generally making comfortable anything that’s stiff or in spasm or just generally sore and unpleasant. Many of the techniques focus on the passivity of the patient, so have detailed instructions to the person performing the technique to allow them to isolate the joints needed and take the weight of the limb without the patient needing to use their own strength.

The final section of the book is “Part 3, Application” which is largely about recording and tracking progress over a course of treatment, and explaining points made earlier in the book in greater detail. This is useful for all sorts of reasons – Not least just to have some objective measures of progress over time, either for personal use, or to show to future physios.

In short: It’s a useful book, either as an educated layman trying to work out things which will make the pain stop, or for working out what a physiotherapist was trying to get at in session. I can’t say that it’s definitely useful for everyone, and I wouldn’t tell people to try to use it as a substitute for proper care from a physiotherapist, but as a tool for educating oneself as a patient, it’s a good place to start.

Exact details of my copy: Peripheral Manipulation, 2nd Edition, G.D. Maitland, Butterworths, 1977. £2.50, second hand.

Disclaimer: Nothing said above is intended as a substitute for qualified medical advice, or to supersede the advice of a qualified physician. This is my personal review of my experiences with a book, as a layman. I am not a medical professional, of any kind, and any health issues should be discussed with a doctor or other appropriate professional.

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.

I hear the roar of the big machine.

Wheels are turning – CBT for Pain on Tuesday at StJ, which I’m both looking forward to and deeply not looking forward to.

And I plan to get to the baths on Monday dinnertime, to take advantage of the free swim. My new regime is going to be Monday daytime, Tuesday evening and Thursday evening at the pool, then (once I’m feeling better) one day a week at the gym proper.

I’ve been fit before, the kind of fit that makes a rodeo bull look like a baconweight barrow, and everyone seems to think I have the potential to be fit again. I just need to believe them.


Long story short, physio was completely ignorant and gave me the boilerplate “End Of Physio Course” speech that I’d already had from C3, and seen my best friend get given twice from C1; “So, that’s a big improvement – If we discount [all the things that have worsened] and focus instead on [single episode of something which wasn’t literally torture] then this has been a big success!” whilst giving themselves a nice big pat on the back and talking over the patient.

In this case, he asked how often I’d been swimming since last I saw him. “Once or twice” I said. And he responded “See, that’s really good, more than you’ve done in the last six months!”

I took a long look. I twitched.

“I’ve been swimming. Three times a week. Since March. You based everything you’ve said to me in our last two sessions around this fact.”

“Ohh.” he said “I forgot.”

“And the Positive Care Programme – That was all pseudoscience.”

“Well, it was just a suggestion!”

“And the health trainer thing – Didn’t operate in my area”

“Oh well. But you went swimming! So one out of three isn’t bad!”

And he smiled the smile of someone who was incredibly happy to take the credit for someone else’s progress, when what he’d actually done was destroy their self-esteem and ruin their enthusiasm for keeping in shape.

Anyway, that was my last physio session. I’ve handed a copy of my London letter, and my Rheumatology letter to my GP, and I’m going to focus on getting in shape for Stanmore. And continuing my rampant autodidactism on all things physiotherapy.