Operation Infinite Dugong

So, Wednesday was London. Stanmore. The thing I was terrified of and didn’t want to go to.


And it was all really good.


Other than the first passenger assistance at the local station, who basically treated me like a sack of turnips and resolutely ignored things like “Stop here” or “I want to go there”, to the point of pushing me high-speed the full length of the station in the wrong direction as I protested loudly, nearly missing my train, everyone was really nice and helpful. Upon arriving in London I was greeted by another passenger assistance bod, who wheeled me down to the Metropolitan line gates, where I was helped down the steps to the platform by a Tube employee (Including the secret knowledge that you can just pay for tickets at the ticket gates, with a contactless card, as if it was a Suica), and then at the other end, in Stanmore itself, I was met by patient transport and ran up to the hospital in a taxi. And everyone was really nice.


The Tube journey itself I really enjoyed – The first train was one of the new S-stock (Very like a Tokyo Metro train, a single tube running from end-to-end) and the others were 1996 stock (Tiny, round trains) and it was a pleasant tour of London’s leafy suburbs. Finchley Road station, where I changed, isn’t quite as lovely as Baker Street, but it’s close.


Anyway, upon arriving at Stanmore I was nervous again, but it turned out to be really useful. Dr DH was much like Dr A (Of UCLH) in that he was non-judgmental, understood that I would be basically an expert in my own condition by now, and reconfirmed that what I was doing now was probably all the right stuff.

New things which he pointed out;

  • The muscle insertions in my shoulders were probably quite unusual (he didn’t say “deformed”, but…) from years of swimming, and that probably had some kind of effect on my shoulders’ luxations, though whether good or bad, he didn’t know.
  • The stabbing chest pains were probably from when the muscles supporting my shoulders got exhausted, and thus tried to co-opt my chest muscles into holding their, not-inconsiderable, dead weight. So, not dangerous, but unpleasant, and my approach to them (“Lie down, arms and neck symmetrical, rest, sleep.”) was exactly right, and powering through them would just hurt more.
  • Swimming was still doing me a lot of good. Incomparable good. Even if I needed to build up my tensor fasciae latae and my adductors separately, because the motion of swimming wasn’t building quite the right muscles for good work on-land, it was a good starting point and meant that there’d need to be less remedial work.
  • He also suggested that the reason I wasn’t great at weightbearing might have something to do with shallow acetabula, as well as unbalanced muscle development in the legs.
  • Decided that what I needed wasn’t the standard Stanmore inpatient course, since a lot of that was to do with psychological management of EDS and basic how-to-get-by-day-to-day workarounds, which I had already worked out, and he admitted that group therapies would probably bore me to tears and that I would probably just “tune out” many of the sessions, because they were either therapy for a problem I didn’t have, or would be teaching something that I already knew.
  • So, he’s proposed some hard-core, full-time, intensive-course physio, hydrotherapy, exercise, and biomechanics. He agrees that what I need is probably closer to a personal trainer, someone who will just walk beside me on the poolside and correct my form, then set me appropriate exercise in the gym, and generally both encourage me to stay fit but prevent me from overtraining and knackering myself. This will either be in London, or will be provided by the local services (Knowing our local services, I’d much rather that it was in London). As much as I know that asking for this was asking for the moon in a bucket, he looked really really enthusiastic about it as well, and is going to get Prof HC to discuss it and sign off on it once she gets back from the EDNF conference.

I came out of the appointment not just a bit cheered up, but downright excited. This is the fruition of what Dr A said at UCLH; Stay fit, and we can make you even fitter. Even if I never get to the point where I can casually walk to the shops or type as much as I really need to, I can get to the point where sudden bursts of hard exercise aren’t beyond me. It was only last year that the first half of my hundred-metre split got close to 25 seconds again. I can do this. Maybe think about getting involved in the naturist swimming galas, for something external to aim for.

After the appointment, I went for a quick tea with an internet friend, and was probably completely incomprehensible since my head was absolutely spinning from the appointment and the long journey; I really enjoyed it though, it’s nice to finally put a third dimension on someone I’ve known for years.

And then, well, back home. The east-coast mainline at night is a frankly meditative thing, whooshing through darkened fields, lit only with the odd glow of a level crossing (Often a level crossing with a pub, or a house, in the old signalman’s cottage), with only the sound of the locomotive up ahead and the odd announcement that was basically lost on the empty train. Eventually, the fields gave way to hills, the hills to sodium-lit goods yards, then finally to the glow of the city. Our railway station always smells so strongly of lilac and greenery in spring, especially at night, and once again the empty architecture was just fabulously calming.


And then there was my medication review on Friday, which I went into much less calm. This was with Dr P, whom I’d last spoken to on the phone a month or so ago, and who in retrospect I’d also been given more capsaicin by during my last migraine (Unrelated events).

And, somehow, that went well as well. Staying on everything that I’m on, adding an extra 100ml per month of morphine, and coming back in a couple of months to talk about Stanmore, once the letter is in. He also said that I was probably “More of an expert on EDS now than most doctors” so just deferred to me on… Basically everything. So, I have a plan – When I go in next, I want to ask about getting my NHS personal health budget, and using it to fund private physiotherapy or hydrotherapy, or both.


Things are looking like they’re going to go well, for once.


Also – On the personal-stuff-level front; I’m now starting my dissertation in-earnest (Due on the 2nd of June), my Mod 1 training (Starts on the 25th of May, exam on the 31st) and obviously I’m still writing the EDS Alphabet for EDS Awareness Month. So, yeah, I’ve got a few plates spinning at the moment, but hopefully it’ll all be fine.

The joy of duplicates

Somehow, last week managed to be a great week. An MOT pass for my bike, a theory test pass for me, a stunning red kite sighting at the swim (through that amazing glass roof, that floods the pool with daylight) and a bit of light work done in the garden – meaning that there are now pots of seedlings on every window sill.

And yet, this week, reality has reasserted itself. Having probably my worst episode of suicidal ideation since 2014, when I was sectioned. The physical pain isn’t helping.

I’m trying to spend a bit of everyday in the front garden with my next door neighbour, since that forces me to be out in the sunshine and be supervised. And, if nothing else, the dog likes it.

I also have my second last University deadline in week. The work is inane and I’m struggling to fill the word count but it’s distracting me from the bad thing.

In terms of my earlier scale, this is somewhere between a type III and a type IV on a background of very distressing and insistent type II.

I may have to codify a type IIb, which is “I am keenly, physically, aware of my pulse and where all of my arteries are, for some reason especially the ones in the top of my feet, my femoral, and my radials.” Since I’m getting that too.

I’m safe, just miserable and not sleeping properly. Haven’t got to sleep until gone five for the past few days, and still getting up at about ten. Not good for me, and feels like I have no control over my sleep cycle, which is distressing in its own right, especially since waking up means spending two to three hours lying completely still, semi-conscious and confused and in a lot of pain, before getting the mobility to take my morning medication.

And the pharmacy have been late with my medication again this month. Supposed to be due yesterday, they swear that they sent it off this morning, so I’ll have it by Friday. It’s fine, it’s not like I need my medication to function at all and have anything approaching a quality of life, right?

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.



Desmond Strikes

Today was all kinds of shit.


I set off with good intentions – Bike into my tutorial, study, coffee in the city, ride over to the garage to pick up some heated handwarmers, then home, then back out again to the 5pm swim at B.


I parked in the University, walked down, put my bags in the tutorial room, and after a couple of minutes, the tutor mentioned that parking in the University was expensive if you didn’t have a permit. I didn’t have a permit so, not wanting to be fined, left my bag and my norgie on my desk and went out to “just move the bike” – Intending to quickly run it around from the University to my usual spot next to the art gallery.


Instead I got stuck for literally an hour and a quarter in the one-way system, looping repeatedly around the city centre and the surrounding industrial wastelands, being led up endless streets that suddenly turned into “No cars or bikes between 2am and 8pm, unless it’s the weekend after a full moon but not when sunrise is between 7.15 and 7.38am.” and trying to find somewhere, anywhere to ditch.


The street next to the art gallery was closed for a Christmas market, shutting off about a quarter of the roads. Another set of streets were shut due to the high winds. Eventually, I got into a car park next to the venue, which was Pay and Display, and since I wasn’t confident on Displaying without having someone steal my ticket, I instead parked in a coulcin-operated disabled bay instead, outside of the car park.


I at least made it to the last forty minutes of my tutorial.


And upon getting out, my bike had been ticketed, for parking in a disabled bay.


I made a mental note to contest is, then decided that since the weather was getting insane, I was just going to go straight to the garage, then bunker down there for a bit and warm up.


Upon getting about halfway to the garage, I decided that I’d rather not be out in the dark, so turned around and headed home instead. The wind, by this point, was brutal gusting up to 80mph, it was like being physically slammed by a big, fast vehicle.


I managed to hold it, on the wet roads, with rainbow oil slicks every few hundred metres, with the wind cutting me across to the point that I could barely hold my lane, until I got to the last hill at the last crossroads, less than two hundred yards from my house.


And then I lowsided. The front wheel hit an oily grating at exactly the same moment as I passed a side-street, which the wind was howling straight down. The bike went down, somehow turning my foot around a hundred and eighty degrees in the process, leaving me lying on my side with my right leg pinned unde the bike, my leg twisted around backwards and pinned under the crsh bar, so that my right foot was facing in exactly the opposite direction to the rest of me.


It took four people to lift me clear of the bike, getting the bike upright as well, and dragged over to the steps of the estate agent. I was doing fine, more worried about my bike than myself, until there was a cup of tea in my hand and I’d started her engine to make sure it wasn’t flooded. And then I realised that my right leg wasn’t just sore, it was wrecked. No way I could put any weight on it.


I got back into the estate agents, aided by M, the first aider and first on the scene – Not a biker, but friends with enough bikers, including a disabled triker, to know that this was normal – who let me curl up on the floor, then helped me out of my boots and out of my leathers, so I was sitting there in my baselayer. Upon getting the trousers about half way down my hip, I heard a high-pitched scream, right on the edge of hearing. It took a second for me to realise it was me.


“That’s what I was worried about” said M. “That hip is all wrong.”


I looked at it, Sure enough, it was dislocated. D, the estate agent, took my feet and got my armour down off that leg, so that I could roll my baselayer up. My calf was bruised already, and my tibia was in front of my patella.


I directed M into my rucksack, to get the morphine, and I drained the bottle.


What followed was a lengthy, incredibly painful, reassembly, with much debate over whether I needed hospital, or how to get home, or whether to ride home, or whether to get Dearest to pick me up, or one of any number of other half-remembered options. Eventually it was decided that M would take me home, me riding the bike at walking pace, him walking alongside, hazards on and being careful.


My leg back in one-ish piece, I was helped onto the bike (Unable to move my own right leg, M had to lift it over for me) and we made a sad procession back to my house. At my door, I wanted to offer M a bottle of whiskey, or chocolates, or something, but after a second’s hug and an exhortion to ride safe, he was gone, a hi-vis clad figure vanishing back into the storm.


And now I’m back home, sincerely wishing that I’d not left the house this morning. Storm Desmond has closed most of the UK, Cumbria is underwater, the valleys are flooding, trees are being blown over, and I’m not going back out in it.


So, today I got an email informing me that tomorrow’s tutorial was on the second floor of a building that had no lifts and that I know from experience has heavy doors all over it. It’s also about a quarter of a mile away from the registration point for the tutorial, uphill, and across a busy road.

The email include the flippant line;

” We are very busy tomorrow and you have no students with mobility issues (assuming I haven’t missed anyone!) which is why you are across the road from the [Main Venue]  You will have to get there now via the [Very Far Away] building – this is because the side entrance facing the [Building Where You Register] is having a refurb, reopening in January 2016.”

Oh, thank you, admin person. Thank you for saying “Unless I’ve missed anyone!” at the last minute, instead of asking at the start of the week, in an email that I recieved right at the close of office hours, when it was just slightly too late to kick up a fuss about it. And, indeed, where tomorrow I’ll have to set off so early that I won’t be able to phone ahead to get the room changed, because the university won’t be open.

I mean, it’s not like you could have asked the disabled students’ office to check with me if I had any mobility issues, or even just to take a wild guess that a disabled student with multiple named conditions might have mobility trouble.

Pretty sure that this actually falls foul of the Equalities Act. Also fairly certain that I don’t have the stamina to protest it.

There’s only four tutorials per year, and now I’m going to miss the first one. No way whatsoever that I might have found it useful, anyway, what with my executive function issues and my complete lack of confidence in this course, and my needing a fairly close rapport with tutors in order to get work done.

So, that’s my academic year off to a blinding start. Not to mention that I’ve been in a horrible state for much of the week, have self harmed more than I’m comfortable with, and am probably going to miss next week’s Sisters Of Mercy gig because I’m too panicky.

A dugong in a badly-fitting human suit.

It’s a joke, but a pertinent one; That I am actually a dugong in an unconvincing, badly-fitting human suit, who gets closer and closer to discovery every day. Basically, my life goals revolve around swimming and eating a lot of seaweed. When asked to do things other than swim or eat a lot of seaweed, I get panicky and short-tempered and quickly fail.

Right now, I’m on the cusp of failing my degree, for about the fifth time. (Second year resits, second year part-time and quit, second year part-time with work, third year part-time resit and made redundant). That was all biology, or biomed, or animal physiology, or genetics. Life sciences, basically.

After getting my CELTA and living abroad for a year, I decided to go to the Open Uni and finish up my degree. So all I needed to do was a couple of second-year credits, and then my whole third year. I decided to do German, since I spoke German fairly well, and that went well; I got either Firsts or high 2.1s in every module, all the way up to 60 credits into third year, where I ran out of German to study.

This felt ridiculous.

And suddenly, I had to start another discipline, at 3rd-year level, without any of the prerequisites. I couldn’t do biology, since I wasn’t up-to-date enough (Five years away from the coal-face, and I could barely do my own molarity calculations, never mind telling someone how they related to determining the viability of bull semen) and I couldn’t do german, since there was not enough third-year credits available in german with the university (It was expected that anyone studying modern languages would study two, so the final year would be 60 credits of german and 60 of french, or similar). So I was stuck between a rock and a hard place.

I chose an English language module – I’d earnt my CELTA (Certificate in the English Language Teaching of Adults), after all, which was all about language handling, and it was the closest thing to degree-level knowledge of english that I had, other than a good A-level in english language and a lifetime of thinking really hard about my word choices.

So I started on it, and by Christmas I was lagging behind horrendously because of EDS, and the attendant fatigue, and having gone mental, again. I got deadlines extended, reassurance that I was going to be fine, plenty of hand-holding… And still, I’m behind.

Last week, I phoned the OU and said that I was going to drop out, and asked if I could just claim the non-honours, unclassified version of the degree.

Today, I got an email from the OU saying that they could offer to let me take the replacement module for the English course next year for free, and that I might want to do that, since a degree in no subjects, with no honours and no classification is basically no degree.

So, I’m back where I started – Part of me wants to just cash-in my credits and be done with it. I can’t get a degree-level job anyway, not with a five-year-long career gap and a collection of illnesses that make me a terminally shit employee, but part of me still views that as giving up, and that I should try again at least one more time. I don’t rally have the option of stopping now and starting up again in the future, since (thanks to the new tuition fees) I can’t afford it.

And I’m going to be fined by the Revenue for failing to fill out a tax return, even though I did fill it out, it was just their stupid website that didn’t acept it.

And I’ve lost £30 to a website which ripped me off on a Windows access code, and am having to talk to the fraud people about it.

I don’t know. My human suit doesn’t fit very well today.

A day of little victories.

Today’s tiny victories;

-Got a 2.1 (77/73) in my third year German module, so I’m now halfway through my final year of undergraduate.

-Made a 20 minute mixed kilometre (Freestyle and breastroke) for the first time in ages, and got home safely.

-About to play a game of chess, probably with delicious roast potatoes as well.

Bugger this “Land mammal” lark, I want to be a mermaid in the Werra.

Rheumatology reprise

Well, today was Professor D at rheumatology at SJ’s – Which was a surprise, since up until yesterday afternoon I’d been expecting Dr W at CA. So that wasn’t a bad thing, just a surprising thing, to be going to a new hospital.

Anyway, he was extremely helpful on most fronts;

-Referring me to a hip specialist, to think about surgery on the bad hip, since that specialist would also be the one who would want the MRI.

-Reminding the pain team that I exist and getting me shoved forwards in the waiting list for CBT for pain.

-Getting me back into physio. Yay.

He also reccommended topical NSAIDs for the right hand, which might work but will be expensive since they’re not on prescription.

And then on the way out, the porter managed to clang my recently-dislocated hip in a door. I screamed loudly enough to bring in the entire ward. He was very apologetic though. And then the taxi driver was incredibly invasive and pushy and unpleasant to the point that it felt like assault, so I ended up geting out of the taxi in standing traffic and fleeing into Emmaus. Wherein I bought a Big Book of Birds (With gorgeous illustrations by Arthur Singer) for two pounds, a new leather jacket (one of the nice double-breasted ones) for ten pounds, which fits me perfectly and feels like the kind of jacket that I will never want to take off, a black and white striped shirt – to go with all of my other black and white striped shirts – for fifty pence, and a collection of paisley silk ties for twenty pence each. Happy days.

I’m now back at home and dealing with the University, who seem to have dropped the ball a little bit, Everyone is still very much on my side, but oh dear.

Onwards and upwards.

Yesterday I had my first significant migraine in ages. Full on aphasia, dry-mouth, visual disturbances, sudden exhaustion, and in the end I just passed out for three hours on the settee. Mid-evening, the heavens opened, and with the sudden massive rainstorm (And enough morphine to floor a bongo) my head cleared.


So, today is a pretty good day.

After a long talk with a faraway friend, I managed to get into work today and make a few quid – Not enough to live on, but enough to mean that I’m going to postpone starving for another day or two. Going to work is always a huge achievement for me, especially after long breaks, so I feel like I’ve done really well, even though I didn’t do brilliantly in actual monetary terms.

I’m also now up-to-date on my German too.

So, two of the huge things hanging over my head are now, notably, smaller. The anxiety that I had been having over the upcoming week has been winnowed down to just one, which is to say “Will I get to this appointment, and what should I expect?”

I’ve also now got all but one of my first- and second- degree relatives’ Brighton numbers, with my direct maternal line turning in 6/6/7 (I’m the seven), my m-uncle and m-grandfather at 0 and my m-cousin at 3. So it’s pretty obvious where the bendy comes from. The lack of data for my paternal side feels much less relevant now that I know that there’s almost definitely bendy on the maternal side (Oh, and three cousins have needed to have their hips pinned or otherwise corrected as children). Effectively, I’m now no longer worried about having to go and have an awkward conversation with my half-sisters, whom I’ve never met.


Three days until I travel for London.


I had a rather lovely dream last night about having finished the doll I’m sculpting, and having cast her in concrete instead of resin. Meaning that she was a lovely cool-pack for when I had migraines and overheated. It might be a good idea, really.

Today, relatedly, was a migraine day, though I did get to finish my German homework (Or at least, finish the written draft of it). Tomorrow, I’ll record it, and that can be the end of it.

Four days to go until London, and I am cacking myself. On the other hand, more of my family have been handing in their Brighton scores, and they’re REALLY interesting. If I can get everyone’s permission, I’ll post them (anonymised) on here – It’s a really interesting tree.