TEETH.

So, after the migraine early last week, and the ongoing pain in my jaw, I ended up phoning 111 – When the dental pain is getting bad enough that you can’t close your mouth, and you can remember that the last time this happened it ended up with an infected abscess that stopped you eating for months, and resulted in the (incredibly expensive) loss of a tooth, you get nervy about dental pain.

The call handler was really helpful and sympathetic – I think this kind of “uncomplicated problem” is what 111 handles best. It’s a shame it’s advertised as being something much broader than it is (and we can get onto the rant of how it’s allowed to use NHS logos despite being a private firm later.)

Not much has happened, other than that I was sent to the emergency dentist at LxH on Monday (sixty quid I really can’t afford to spare, including the taxis there and back because no way was I riding in snow with reduced vision in one eye and my ears ringing with pain), where I was given penicillin (Four times a day, no eating for two hours before or one hour after a dose) which is making my guts feel like a nightmare, and have an appointment with my own dentist booked on Friday at 2.20.

At least the jaw pain is decreasing. Slowly. Current verdict is that it’s an acute presentation of a chronic abscess. Probably meaning that the tooth will have to go, or at least that the bone will need to be drilled. Fuck.

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Batman

Another major win – If I can manage a win per week, I will be happy – was discovering the local naturist swim.

I’d intended to go back in November, where instead I broke my leg, and then had somehow been busy every time the session was on since.

Signing up was a bit like joining the Masons, or something – Not meant to say exactly when it is, or where, and specifically not meant to say who was there. Arriving, I said “One to swim, please!” and got the guilty-sounding reply of “The normal swim, or…”

I quickly confirmed that I did mean the naturist swim, and suddenly everyone was all smiles and welcome – I was led through to the poolside, introduced to everyone with a broad arm gesture, then generally got to swimming.

As ever, I was the fastest person in the water, and one of the youngest (Though there was a handful who were definitely younger than me, or about the same age), and it was generally lovely to feel warm water, and steam, and to be around other people for a short and defined period of time, having light-hearted, basically meaningless conversation. Everyone was slightly over-keen to engage in conversation, but they avoided the usual topics (Crippledom, tattoos) and instead I discovered that a huge number of the local naturists are also bikers (I knew that there was a big naturist-biker overlap, but it’d hadn’t occurred to me what that would mean in practise). Which was a delightful realisation. My complete inability to remember names means that all the bikers are now stored in my memory by their scoots, and all the non-bikers are stored by vaguely where they live. I’m sure I’ll get people’s names eventually, and they seem like generally the type of people that would forgive me for forgetting. I ended up nicknamed within about ten minutes of meeting him by an old gent who looked like a second world war flying ace, and was generally accepted by everyone there basically immediately.

It is basically true that, absent social clues like clothes, we all start being much nicer to each other. Or possibly just that the kind of people who go to naturist events are more prone to be nice to each other in the first place. I was (slightly awkwardly) hugged by a woman who was probably about my age, and who swapped numbers with me and who immediately wanted to be friends. I must admit, I was about as gleeful – We’d both admitted to not seeing people very often, being not-far-off-housebound, and generally finding it difficult to get into conversations. It was refreshing to have this just be “another fact” rather than a point of shame.

The bath itself is one of the late Victorian ones, with the massive skylight, wrought-iron galleries, and plumes of warm steam in the air, making the swim itself look a bit like an odd re-enactment of Jean-Léon Gérôme’s Harem Bath painting, complete with people showering in the background, small groups sitting chatting with their feet in the water, and (sadly) one person limping around in the foreground, being held up by one of their fellows, in this case with a dislocated hip. It took about ten minutes in the steam room to heat it up and put it back together, but other than that it was just a lovely evening out.

Definitely going back next time. It’s a short, pleasant ride away from home, at a convenient time, and with nice people. Plus, it’s exercise – After three months of no-swimming after three years of swimming at least three nights a week, I am feeling floppy and useless. Hopefully this will make me more mobile and fitter again, as well as giving me a designated time to go out, forcing me to interact with other humans, and getting me some very simple regular bike time.

All good. Hopefully, it’ll stay good.

Migraine Week

So, on Sunday afternoon, I managed to seriously burn my mouth whilst eating (Having taken 10mg of diazepam and 20 of morphine to stop a very painful hip dislocation getting any worse, which basically meant that I couldn’t feel the inside of my mouth. Not even when I put a whole roast potato at 200 degrees into it, and bit, and chewed, and swallowed.)

By very late on Sunday evening, the whole roof of my mouth, the back of my throat, and all of my gums were one big blister, bad enough that all of the teeth in the hard palate were loose.

On Monday morning, I woke up with my jaw dislocated, which slowly got worse and worse, and I was reduced to eating nothing but oat milk.

On Tuesday morning, it was the same – Sore teeth, tempromandibular joint in pieces, unable to eat, and, worst of all, starting to get a migraine.

At about 19.45, I took a zomig and got in the shower to try to clear my head. By 20.00, I’d fallen out of the shower into a completely dark room, had tied a cashmere shawl over my eyes with a full bag of frozen coriander jammed into the worst of the eye-sockets and was screaming. I couldn’t lift my head off the pillow, or turn my neck, or move my jaw at all. I later described the sensation as “Like having a metal spike stuck in through the brow bone just above the left eye, exiting through the roof of the mouth, then lodging into the TMJ. Whilst fellating a lit blowtorch.”

And it stayed like that for several hours. Getting worse.

I called up Dearest, who switched on the low, green “migraine safe” lights (still too bright, through the edges of the blindfold), checked that I wasn’t actually having a stroke, and phoned 111.

111 were, predictably, useless.
– The nurse was angry that he couldn’t tell whether I “couldn’t” look at bright lights or “just didn’t want to”. The answer of “It hurts so much that they can’t” wasn’t good enough.
– The nurse was angry that he, and then I, couldn’t state whether I was “in pain” or “feeling very unwell” since the answer was both.
– The nurse was *incredibly* angry that we were certain that this was a very bad migraine, rather than meningitis (Occam’s razor does suggest that a migraine-like pain in a migraineur, who describes the pain as “exactly like my normal migraine, just worse” will be a migraine)
– The nurse was apoplectic with rage that we wanted advice on whether to take a second Zomig, or to take morphine. We were treating them like a medical advice line!
– The nurse insisted that she knew EXACTLY, and much better than I did, how a hospital trip (to somewhere full of flashing lights and loud noises) would affect me, and that it wouldn’t be as bad as I thought. Despite our repeatedly explaining that I had EDS (Which she repeatedly told us she “Didn’t know what that was, so didn’t think it would matter”) which would make it impossible to travel.
-The nurse finally assented to send out some paramedics, who would do a better job at looking after me.

That converssation took something more than an hour. How Dearest didn’t just fling the phone across the room, I will not know.

The paramedics arrived, and were genuinely brilliant. Clocked my pulse and blood pressure (146bpm, 130/100ish) checked my pupil response (Pupils not responding at all, patient hissing in pain, eyes watering, flinching away from light) and sat with me as I took literally as much morphine as I could safely take (There wasn’t likely to be any interaction, but it was helpful to have trained people on-hand in case my heart stopped).

The pain started subsiding, down to about a six. Blood pressure, again – 120/80. 80bpm. The paramedics started to relent on the insistence that I had to go to hospital, and transmuted into “You should go to the GP tomorrow.”

Eventually, they left. I passed out.

Phoned the GP at 13.30 the next day, as the pain got bad enough to wake me up, and was resoundingly told off by the receptionist that I hadn’t phoned at 8am. All appointments, even emergency appointments, went at 8am, there was no other way of getting them. Even having been told by the paramedics that it was medically necessary. They were all gone. Gone gone gone. And I was a bad person for not being able to wake up in the middle of morphine-induced migraine-sleep.

I pointed out that it would be on her head if I ended up back in A+E that night. She gave me an appointment at 17.40. That appointment must have been available anyway, so I have no idea why she tried to make me not take it in the first place. Maybe she just enjoyed hurting people.

By the time I got to the appointment, my head felt like it was being trampled on, again, and I could barely lift my head. Not to mention the intense photophobia. The doctor – One I’d not met before, Dr A – was sympathetic, and took my heart rate again whilst reading the paramedics’ notes. 112bpm. Still worryingly high, but also very much proving my point that I was really in pain, not just complaining. He advised doubling my zomig dose (Taking a second one two hours after the first, if there was no improvement) and just calling the rest of the week a write-off.

It was pretty much Friday night before the pain even started subsiding, and it’s still ongoing as we speak. So looks like this is going to be another incredibly long migraine.

A Skulk of Foxes

Last Sunday was an unconditional win.

Got up early, to find bright blue skies, dry roads, and a lovely chill in the air. This is the kind of riding weather that makes me feel frankly privileged to be out on the roads, and today’s roads were perfect – Not too full of traffic, and mostly mildly-twisty old Yorkshire town roads, up and down hills to the woods which were surprisingly easy to find.

I was going to a whittling workshop, ran by C, (met on Twitter, where he’s @brightaire) in one of the many bits of pleasant local woodland. I arrived to find half a dozen people camped near the model railway, with a good-sized campfire, a pile of freshly-sawn greenwood (ash), a selection of hatchets, billhooks, and whittling knives, and lots of tea.

After a quick talk about tool safety (Including the awful words “blood bubble” far too many times, and strict instructions to think about where your femoral artery is if you’re sitting and whittling over your lap) we were quickly taught the basics of whittling – How it was important to always split a log through the pith, the centre of the growth rings, since that was the weak point, then how to saw inwards to make stop-cuts, then to whittle in towards them, either away from yourself, or towards (as if peeling a turnip). This was all that we needed to get started on the project for the day – The aforementioned skulk of foxes.

Mine… I won’t say that mine turned out well (I managed to make one of six) but the action of actually carving made me really happy, and really enthusiastic about the idea of doing more whittling in future (Basically as soon as I’ve bought a small pull-saw and a curved scoop). There’s something very meditative about slowly revealing the shape that you want out of a solid piece of media – I’ve never done subtractive sculpting before; My medium has always been clay, where any over-deep carve can be corrected in a second by sticking a bit more on the top, but also which works a lot faster in-general, so you can’t just slowly decide what you’re doing as you cut down towards it. It was a very refreshing change, and a lovely change of pace. Plus, with this being a new activity, I didn’t feel like I was under so much pressure – I wasn’t comparing myself to my own pre-degeneration work, or the master sculptors that I’ve admired for years, I was just sitting in the forest, with a collection of nice people, and a few blocks of wood that I could turn into something pretty, with no particular pressure to be good at it. Exactly what I needed.

Definitely going to the next workshop, which will be pewter casting, at the start of March. Thoroughly reccommend it to anyone that’s even vaguely Local.

The best of intentions.

Today was overall a win. I went out to the charity shops, which I now plan to do once a week as a leg-stretch and an attempt to do some weight-bearing exercise.

An armful of purchases:

– One big lump of hammer-broken red-brown-orange-purple cullet glass, that’s about the shape and size of a lung, which reminds me of a similar lump of glass which my great-aunt used to keep for luck at the bingo. Hers was green, and we have no idea where it is now, other than that I hope it’s still in the family. I’ll photograph the one that I have, and ask my Mam if she remembers it.
– One silver candlestick, to add to the slightly Victorian feel of my living room and also because candlelight is incredibly relaxing when in pain.
-One crystal ship’s decanter, to add to the collection (or I may yet give it away as a present).
– One massive industrial weaving shuttle, for keeping my medication in – Sadly I couldn’t afford to buy the second one, which had artificial flowers glued into it and was a proper bit of Yorkshire folk art.
– One cheap denim jacket, on which to sew my NABD patches and assorted others.
– One turned brass goblet, which looks like it fits into the category of “Things that someone made whilst working in manufacturing, when they should have been making something else” which is my favourite category of things (Probably because much of my grandparents’ house when I was little was furnished with woodwork and metalwork that my grandfather and great-grandfather had made when they worked in the shipyards)
– One walking stick, with ice crampon.

All for less than about £15 total, and all of which will get good use.

But there was also a disaster – There is always a disaster.

At the hospice shop, just as I was about to leave – And after a lovely twenty-minute conversation about Northern glassworking and history and stuff – one of the staff cornered me.
“Have you had an operation?”
I wasn’t immediately uncomfortable about the question, but her body-language bothered me. She’d cornered me into the shop, between two aisles, so I couldn’t get out or away, or even turn aside.
“Ha,” I said “No, just unlucky.”
99.8 percent of the time, people understand that this means that I don’t want to talk about it.
“Oh, so are you weak then?”
I didn’t answer, I just sort of shrugged noncomittally and tried to step backwards. She stepped forwards, and asked again, a bit louder;
“Are you weak? Is it weakness? Or is it pain? Or do you get tired like?”

I realise now that I should have just said “I don’t want to talk about it”, but it’s very hard to say that when you’re trying to stay polite, and when your mental conversational options are either “The truth, the whole truth and nothing but the truth” or “Fuck you and the goat you rode in on”.

“Dislocations.” I replied, then as her arm came out to pat me on the back, I added “I’m really fragile, I basically can’t be touched.”

So she took this as an invitation to hug me around the shoulders, as tightly as she could.

Both shoulders, one of which was already pretty stressed from holding me upright on the stick, and the other which was already under stress from having a heavy bag dangled off it, concertinaed inwards.

I let out a little scream, and crumpled towards the floor. She tried to pull me up by the arm, as I protested “No, no, please let go of me, I just need to get down to the floor. I’m a bit faint. I’ve got two dislocated shoulders.”

After a long few seconds, I was kneeling on the floor, clutching my useless arms and trying to remember how to inhale, and she was standing over me and apologising profusely.

“You’ve gone all red. I’m really sorry!”

And she really was really, really sorry. She obviously cared, and was worried that she’d hurt me, and was having to come to terms quite fast with the fact that she’d crippled someone who was barely upright in the first place.

I shrugged out of my leather jacket, and started popping my shoulders back into their processes. – Both clavicles were out of place, both glehohumerals were out of place. Nothing too complicated, just painful and taking a while to reset.

“Would you like a cup of tea? Or a hot chocolate? Or water?”

I wanted out, as fast as fucking possible, but I still had things to pay for and still had to get back in one piece.

“A glass of water, actually, that’d be good” I said, to get myself some space.

She went off to get one, and I continued re-setting my shoulders. The other assistant came over, bringing a stool for me to perch on, and said;

“Oh you know, we’re really sorry, she’ll not sleep tonight I bet. She didn’t mean any harm. I mean. She couldn’t have known. Can I help at all?”

I thought for a second, mulling over how she definitely could have known, if she’d listened for a second, and pragmatism overcame pride;

“Can you put a hand on the flat of my back here, and push as hard as you can?”

“Ooh, not too hard…” she said, obviously still knowing my condition better than I do, and gave a feeble press onto my scapula. I pushed back, raised my arm, and cracked my shoulder into place. She flinched a bit, then said “I’ve seen people faint with pain from a dislocation before. You must be very brave.”

I shrugged. I wanted to give my speech about how it’s not brave – How every time you say “You’re so brave!” to someone just for living with a disability, you’re basically saying “How aren’t you in an institution?” or “How aren’t you dead?” She started patting me on the shoulder. Repeated taps with a little circley-rub in the middle, basically the worst possible thing to do to a freshly-dislocated shoulder.

“Please, don’t. Be careful.” I said. She stood up and backed away;

“Ooooh, sorry. You know, it’s just instinct. Hard to not.”

Reallyy? Really person-who-met-me-two-seconds-ago, it’s hard for you to not keep bloody touching me?

The first assistant, the one that had started the whole debacle, came back, just as I said;

“Even my closest friends can’t just touch me without warning. We shake hands, carefully.”

Honestly, I didn’t think that it would have ever been something that I’d need to explain to strangers. I and my friends tend to hug in an extremely gentle, basically-rest-your-head-on-the-other’s-chest-or-shoulder-and-put-a-hand-on-their-waist kind of way, which is both tremendously rare (Why hug someone when it’s probably going to hurt?) and tremendously intimate (Again, if it’s that rare, of course it has emotional value).

She sat down opposite me, as the second assistant went back to the till, and said;

“So, have you been like this since you were a baby, then? It must be very hard.”

I shrugged.

“It’s not as bad as it sounds.”

“But have you always been like this? Since you were a baby?”

I think that the worst part is when people just repeat questions, when you don’t want to answer them. Where there is no reason for them to ask the question, and no reason for them to need to know the answer. Suddenly I wasn’t the interesting person that knew all about the local mills and the Sunderland glassmaking tradition, I was The Cripple. And people talk to The Cripple about Disability.

“It got worse when I was about twenty. But I’m doing fine. Cracking on.”

“So, can they do anything for you?”

That is the question that I wish could be stricken from the vocabulary of anyone. Sorry, you must reach at least Level Fifteen Friendship before you can force me to confront my prognosis of increasing pain and decreasing function until the bottom of the morphine bottle looks like a lovely destination for a really long one-way trip. Do not just casually ask a disabled person “if anything can be done”. The answer might well be “Well, surgery next year, and then I’ll be abled again,”, or it might be “Lots of medication and physio and hard work”, or “Actually I’m dying”.

Think about that one.

I answered, anyway;

“Painkillers, mostly.”

She looked sympathetic.

“It must be terrible.”

“It’s fine.” I insisted.

She patted me on the shoulder, giving it a good hard shake that re-dislocated it, and I doubled over in pain again. She started apologising, again. This time, evidently, it was at least a little bit amusing – After all, this ridiculous, completely unpredictable thing had happened twice now.

I popped the shoulder back into place, and took an enormous swig of morphine. First assistant tried to catch what was on the label.

“Well,” I insisted, standing up, “I’ve got to be off.”

She helped me into my jacket, and I let her, since that would probably give her some sense of absolution, and she held out a hand for me to very carefully shake.

I went on my way. Feeling like shit and in a lot of pain, and wondering why I was more worried that I’d traumatised two shop assistants than about the persistent, twitchy pain in my shoulders.

In better news – I got out on the bike yesterday, for the first time since the last time I went to the garage, and it was… To go to the garage and buy a mudguard. On the other hand, I now HAVE the mudguard, so I can hopefully ride up to the whittling workshop in the woods tomorrow (Delicious alliteration there). And the day before yesterday, Dearest joined the motorcycling fraternity, with his like being delivered next Wednesday. And he’s joined the NABD too. And our year bars for 2016 have arrived. It’s all very exciting. Might be going to my first rally in May as well, if I feel up to camping…

Bullshit and bumfluff

So, yesterday was rheumatology, with not really Prof McG, but a doctor under him, who I’ll call Dr Blue.

 

We’ll start with the way that by the time I got there I was so violently car-sick I passed out in the waiting room. Shaking, freezing skin, grey lips, grey to the roots of my nails, eyes shut to stop the spinning, clutching a sick-hat like it was a rosary, whilst the two waiting nurses fussed and patted my arm and looked genuinely concerned. And as the carsickness wore off, the pain in my shoulder faded in.

 

After about a quarter of an hour of waiting, one of the nurses put me in a consultation room, on a bench, with pillows, and I drifted off into quiet overwhelming-pain land for a little bit.

 

After a while, Dr Blue arrived, and she was worried for me. Step one was a really good sign – Asked what was wrong with the shoulder (though didn’t seem to understand that “main problem” didn’t mean that the rest of me was fine), got me to take my shirt off, then got me to move my arms through a series of symmetrical movements to view the difference between the two, then the arm on its own to check for the pain (Determining that the pain was “all the time, other than when I was lying completely flat”) and then asking about when the pain started, and if there’d been any examinations since then.

 

When I said, “No, not deliberately, but I did get x-rays when I’d crashed my bike two months ago” she immediately got me back into my shirt, and moved into the next room, where she could access my records and bring up my images. Nice, clean, non-cracked bones, no calcific tendonitis. Very good chance that it was just a lot of soft tissue damage from constantly dislocating and relocating.

 

She said that, once again, I was doing everything right – Keeping the muscles warm, trying to move as much as I could, getting anyone I could persuade to massage it to massage it – She approved of my having decided to train myself as a physio, she approved of my using Maitland for basic manipulations, she approved of my using topical irritants – acupuncture needles, chili oil, self-harm – and she generally just approved of my attitude. She said, even without needing prompting, that hypermobility syndrome tended to frustrate medics, purely because it was so difficult to treat, needed such a multi-disciplinary approach, and would just relapse all on its own, even if you were doing everything right, sometimes.

 

She sent another letter to the GP’s practise to ask them what on earth had happened to my Stanmore referral. I still don’t really expect to ever hear about that again.

 

Then she asked about what medications I was on, and when I got to “diazepam” she got the pinchy-frowny face that doctors only get when they’re about to say something either wildly ignorant or wildly offensive.

 

“How much of that do you take?”

“Sixteen miligrams, a month.” I said, “Which is why most of the time I just have painful spasms that make my nails go blue.”

“Oh” she said “That’s good, it means you won’t get addicted. Nasty stuff.”

 

I decided not to bother protesting. No point in getting labelled as a drug-seeker, when I’ve been coping, just barely, with a lot of pain. At least I’ve been coping. But then I had to protest, because she decided to add;

 

“Have you tried any complementary therapies? Like aromatherapy, maybe.”

 

I think my facial expression could only be described as anatomically improbable and upsetting to small children.

 

I didn’t have the strength to complain. I just suddenly, immediately, wrote her off as an ignorant fool. It was probably a good thing that it was right at the end of the consultation, because up to that point she’d been perfectly reasonable and had mostly been talking sense, even if she did partake in the unforgivable delusion that addiction was drug-dependent.

 

I left, taking the prescription for capsaicin down to the pharmacy, and booking for my next three-month appointment with Dr D again, which will hopefully this time actually be with Dr D.