Wagahai Wa Shimauma De Aru

Today has picked up a bit, but it started at a low – When you’re at the bottom of the Norwegian Trench, swimming a hundred metres up won’t get you to oxygen, so I’m still not doing great. This morning was absolute hell – Flashbacks to some horrible things, to the point that I lost track of what year it was, then lost anything approaching control and smashed a load of crockery and glassware.

This precipitated me cleaning until I’d badly injured myself (Two dislocated hips, hands bloody, right shoulder wrecked, left knee similarly wrecked)

I debated phoning the GP. Over the years, I’ve tried every family of antidepressants going – Some did nothing, some made me numb and forgetful, some sent me into uncontrollable mania, a couple made me more suicidal. I thought about talking therapies that could be offered – I’ve been CBTed enough, and it’s done wonders, but I hate talking to therapists and I always worry that I sound like I’m patronising them and that I think I’m superior. I also despise the whole setup of people looking at me and doing the sad eyes and asking leading questions. And, well, the last time I went to a mental health service (Other than CBT For Pain, which was decent) I was threatened with a BPD diagnosis for being uncooperative (I didn’t want to take Venlafaxine, which had made me feel horrific in the past, and didn’t want to take Quetiapine, since it had such a bad reputation and had stolen a year of my sister’s life) – And I do mean “threatened”, as in “If you don’t cooperate and take the Venlafaxine, we’ll give you a diagnosis of BPD, and then it’ll be reviewed whether you actually have EDS or not, or if it’s just somatoform illness. Which means that your pain medication will be stopped, whilst the specialists work that one out, either way.” in almost exactly those words.

I decided against phoning the GP, and spent half an hour instead bending my fingers backwards.

Eventually, at some point, I started feeling more like myself. I downloaded Sketchup, and started working out how to make buildings (My goal – Design a city with interlinked Metro and light rail, where everyone lives within 200m of a railway station, 20m of a public lawn, 1km or 10 minutes by rail of a school and within 30 minutes of the university, airport, CBD, and hospitals.) My city is currently a load of multicoloured origami papers, stuck to the wall above my chaise with plasticine. Transit hubs are cranes, educational establisments are cicadas, hospitals and surgeries are yakkos. Fields are just flat pieces of paper, because they’re fields. It’s a start, and when I start really playing with it in Sketchup, I can make everything architecturally pretty as well. I can see towerblocks and offices-above-shops being a big part of the model, meaning that there’ll have to be tall buildings, and because this is me designing it, there’ll be rooftop parks and terraces in the CBD.

Maybe my project for this year can be building a little utopia.


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 http://www.psychologytools.org – 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!

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.

Normal service resumed

And finally this morning a letter arrived in the post from the Community Pain Team, talking about their waiting list for psychotherapy/CBT for pain (Yes, that waiting list that I’ve been on since before this blog started).

No, it’s not a letter saying “You are now definitely getting an appointment, here’s the date!” it’s a letter saying “Please ring us and tell us if you still want to be on this waiting list.”

Yes, I do still want to be on this waiting list. I am currently on a LOT of ambiguously long waiting lists;

CBT for pain

Specialist surgeon, hips

Physiotherapy, hands

Physiotherapy, general

Getting a pre-A+E checklist


And that’s just the ones I can remember.

Some sort of psychotherapy will definitely do me good. This week has been lost in a blur of nothingness and self-harm and feeling guilty about needing to be cared for. Disturbingly, non-suicidal self harm seems to temporarily numb the pain I’m experiencing in my joints. I don’t want it to be my coping mechanism. I need to work on it. My seasonal issues are in full-swing right now (The clocks go back tonight, so this isn’t a shock. It’s still sad.) Very difficult reminding myself that I want to be alive right now.

In other news – My disability bus pass has arrived, and thus I’ve got my council card to get cheap swimming (£2.20 per session now, to spend forty-five minutes to an hour in the local pool, which never has more than about seven people in it, and is never less than a pleasant 30 degrees (written as 86 Fahrenheit on its ancient pool thermometer). For two nights a week, I swim lengths in the open sessions, and as the lanes begin to empty near the end of the hours, I begin to walk instead of swimming, slowing down and working harder, the water taking most of my weight and making falls an inconvenience rather than a nightmare, reminding my back how to carry my weight and my knees how to progress without buckling. After that, when I get out, I shake for hours and need morphine to get as far as wrapping myself in a towel. On a Sunday afternoon, I either spend forty five minutes being privately coached in technique on the four main strokes, or share the pool with at most three other people. On a Friday night, the lane ropes are taken out, and I have the chance to float gently or turn cartwheels in four-metre-deep water. I’ve been going regularly since Spring, and I can feel myself getting better. I still can’t walk on land, and I’m getting no closer to that, but my hundred metre freestyle is creeping down below the 1-minute mark, and I’m looking fitter again. I may be horribly underweight and never more than ten feet from enough morphine to kill myself, but my shoulders and thighs are looking fuller, and my stomach and back radiate clean heat when I curl up in bed after a long swim.

And the final bit of news, I suppose, is that my disability benefits have arrived. I was awarded higher rate for both mobility and home living, meaning that in the eyes of the government I am a very, very ill pigeon. And I can use that to pay for the things that I need most to make my life worthwhile – First, better bedding and better lighting (An electric blanket and a SAD light of my own), then a cleaner and possibly a carer, cheap and edible food, and, absolutely definitely, taxi fares to go places. To meet my friends. To go to the pub. To get to the fifty-metre international pool outside the city and absolutely cane it.

And an old friend from Before has got in touch, which is bizarrely reminding me that I am still me, despite feeling like an empty shell nowadays.