Wearing Silver

It’s overdose awareness day, so I thought I’d blog.

Overdose is one of those words that is freighted with an awful number of connotations, and those connotations are basically all awful.

“Benny died of an overdose.”

And the wheels start turning in the minds of the ignorant:

What did he overdose on?

Well, if it was prescribed by a doctor, he was either too ignorant to take it correctly, or he was suicidal. If it was something he’d been taking for years, he must have taken too much because a “normal dose” wasn’t giving him the right effect, and he was turning into an addict. If it was an accidental overdose, the doctor shouldn’t have prescribed him something so dangerous. If it was a deliberate overdose, someone (anyone!) should have been watching him more closely. Drugs like that shouldn’t be prescribed, ever.

Well, if it was over-the-counter, it shouldn’t have been available in the first place. What kind of world do we live in where things that can kill people are available without a prescription?

Well, if it was an illegal drug, he was either a terrible criminal or a poor fool who was preyed on by a terrible criminal. If he was an addict, this was always coming and it was his own fault. If he had just taken it for the first time at a party, his friends are all evil and irresponsible and should be pilloried forever, with no acknowledgment that they’re in mourning too.

Was it a deliberate overdose?

If it was accidental, the stuff – whatever it is -shouldn’t be available anywhere in the world ever, and posession of it should be the worst sort of crime, punishable by life imprisonment.

If it was deliberate, then the usual tropes about suicide come out. Selfish, or melodramatic, or uncaring.

And the question that everyone seems to want to ask, in the worst part of their psyches;

What did it look like? How did it feel?

Because enough of us have heard of Nembutal, or or just quietly turning up the IV morphine, or rock stars being found with the needle still in their arm, or horror stories about paracetamol or cocaine, that people have a prurient interest in these things.

No. there is only one kind of question that you ask;

“Are you all right? Is the family all right?”

I don’t have much to say on the emotive front. I’ve lost more than one person to overdose – One good friend, as a teenager, who was taken by a fatal episode of mental illness. One older relative, who knew that there was no light at the end of the pain tunnel, and made an exit soon after saying her goodbyes. I’ve attempted it myself, and learnt the indignity of stomach pumping, short-term dialysis, liver function tests, and not quite being able to look your friends in the eye.

So here’s the practical front;

What to do in the event of suspecting an overdose

Call 999 – An ambulance should arrive within 30 minutes, as an overdose is one of the highest categories of urgency.

Start CPR if the person isn’t breathing, continue until ambulance arrives.

If they are breathing, place in the recovery position.

Do NOT induce vomiting, but if they do vomit, encourage it (Sit them upright, lean them forwards, let them gargle with water in between heaves, without swallowing).

Do not let them eat or drink.

Gather up the packages of whatever you suspect that someone has overdosed on. If there are remaining samples of the drug, give them to the paramedics as well.

Try to ascertain if the person has taken any other drugs, including prescription medication, or alcohol, or food or drink.

Talk to the person and try to keep them calm.

A key thing to remember, if you suspect that someone has overdosed, is that the first stages of a drug overdose often look nothing like the media portrayal of such – The person won’t simply fall to the ground, sweating, shaking and vomiting up brightly-coloured capsules by the dozen. Every chemical has its own syndrome, broadly speaking, and each syndrome will present differently depending on how the drug was administered (IV looks very different to something which has been swallowed or smoked). “A Small Dose Of Toxicology” (Steven G Gilbert) has any number of case studies, so I won’t write them all down, but here’s what a morphine (or a lot of other opiates or opioids) can look like in overdose;

What a morphine overdose looks like

-Extreme tiredness and faintness


-Drooping eyelids

-Pinprick pupils, and light sensitivity

-Itching skin (usually)

-Slow pulse

-Shallow, slow breathing

-Nausea and probably vomiting


-Flushed skin

-Feelings of overheating


…And all of those can signify anything from “Has taken a bit above the required dose, will feel a bit grim tomorrow” up to “Get to the hospital, now”, depending on the person involved.

As for “Why on earth are these dangerous drugs even prescribed?” I’ll leave you with a bit of Paracelsus;

“Alle Dinge sind Gift und nichts ist ohne Gift; allein die Dosis macht, dass ein Ding kein Gift ist.”

All things are poison, and nothing is free of being poison; It is only by regulating the dose that we can prevent a poison from acting.

Paracetamol is toxic. Alcohol is toxic. Peppermint is toxic.

As long as we try to artificially teach people that there are some drugs which will kill them instantly, and other drugs which are one hundred percent safe all the time, we will fail people. We will fail the people who are in pain, but avoid opiates because “Opiates will kill them” and we fail the people who end up with their livers destroyed by having one too many paracetamol for their bad head.

As long as we try to teach people that simply touching a drug like heroin or meth is enough to taint them forever, we will fail the people who end up overdosing because they feel that their life will never be anything but their addiction. We will fail the people who do overdose, then refuse treatment and end up further harmed because they don’t want the stigma of their doctors or friends knowing what they took.

As long as we teach that dying of an overdose is something that only happens to the careless, the criminal and the inherently tragic, we do a disservice to all of the people who have been touched by overdose – Whether deliberate or accidental, fatal or survived, as the person who took the overdose or as someeone who loves someone who has overdosed.

We need to put our house in order about drugs, and start teaching based in evidence.

Look forwards, go forwards, look down, fall down.

I am home. I am home and back in my bed.

There is something dark in going on holiday to somewhere that looks exactly like your hometown. I can only describe it as being like running into your ex, your abusive ex, at a sit-down dinner with a lot of complete strangers.

This was a place that looked exactly like the place that fucked me up. Plastic signs on redbrick terraces, every shop either a takeaway or a bookie’s or a secondhand furniture place. Old pubs with neon signs, vertical drinking in places that could have ben so nice with half as many people, at a quarter of the volume. Cranes and half-gutted container ships looming over everything, little cobles stuck in sandbars that the owners would claim were daily runners but that probably hadn’t been out of the river-mouth in years. Caravan parks like shiny tumours, never quite spilling prosperity out onto the rest of the town. Dusty farmland in tiny patches, clinging on despite the pollution, crisscrossed with tracks from youth on scramble bikes and the police chasing them. Dead factories and scrubby patches of vacant ground, where corrugated tin sheds had been pulled down and left bare as “development opportunities”. And through it all the smell of mud and oil and seawater.

But worse – This looked to me as my old hometown looked to other people. Everyone I’d taken home, had seen… That. In me. Had seen me as part of it, shaped by it, with the stink of it on me. Horrible ugly place that I’d barely survived, and where every last interaction had left a scar, and it was on me.

I felt sick. I wanted to die. I wanted to curl up, put my arms over my head, and never come out.

All else this weekend – The midnight walk out to Haile Fort, losing my shoe in the Humber mud the day after, buying the motorbike, seeing the swallows flocking over the fields before their migration – is lost in that feeling of being back in hell.

But I am home, and back in my bed.

Do you believe in valkyries?

So, today was Bike Trip One – Going to see Bike One, in Orrell, 50 miles, three trains, a bus, and a short, muddy hike away. Thankfully, I was spared most of the short muddy hike by the bike’s current keeper driving down to the railway station to collect me. Whilst out, I also dropped off the change bucket that I’ve been storing up since 2007 at the bank, and found myself £106 richer than I thought.

It’s a good looking bike – 2005 Suzuki Marauder (In a colour I can only describe as “Utter twattock red”, and thus perfect), 30,000 miles on the clock (owch), Cat Ced more than five years ago for “something cosmetic” which has since been repaired (The painted parts of the bodywork are pristine), lost most of its chrome (mope), but it’s like riding a Shetland pony – Short and fat and heavy, not particularly quick, but comfortable, comfortable. It’s got saddlebags and a sissy bar, so at some point it was evidently someone’s two-person long-distance ride, even if recently it’s been a to-university-and-back vehicle for a lone student. It’s promising, and it’s a few hundred quid below market value, due to it taking up too much space in the owners’ garage.

There’s basically a slack handful of companies that I’m looking at (Suzuki, Honda, Yamaha and Kawasaki), either a custom-cruiser or a commuter bike, but since at 125-size the difference is negligible I basically mean “Any unfaired or minimally-faired bike, with a comfy, upright-ish riding position, room to carry stuff, and preferably a teardrop fuel tank and wire-spoke wheels because I am a complete fool for pretties”, and with a budget under about a grand, since that leaves me with money enough to pay my tax and insurance, get my theory certificate, and some Big Bike (Direct Access) lessons before taking my test.

My travel radius to find said bike is, apparently, about fifty miles – That covers my city, all the other cities and towns in its conurbation, and the nearest big cities to the north, south, and west. This of course leaves the problem that I might have to do my first solo ride, on a new bike, on unfamiliar roads and up to a distance of fifty miles, after a rail journey of, apparently, up to about three hours once I’ve allowed for the bus to my railway station, changing trains in little towns and taking branch lines into adorable villages where there’s only one train an hour.

Suddenly, it’s all the more obvious why I want a bike, and it’s not just about the fun of actually riding it – I want to be able to leave the city without having to take a whole day just to get to and from my destination. Today I spent seven hours travelling, for a half-hour of looking at a bike. This, in my world, is about normal. I used to travel two and a half hours each way to spend two hours a week volunteering at the Greyhound Trust. Likewise, I used to happily travel two or more hours each way to go to naginata or iaido practise, in three different cities. When I did roller derby, that was an hour’s commute, on two trains and a bus, three times a week. I can’t afford that much time now, but I bet that if I was a bit more independently mobile, thus with shorter journey times and less pressure (The difference between “ten minutes late” on the train, when missing a connection by a minute can make an hour’s difference at the other end, and “ten minutes late” in private transport, where that ten minutes is the same ten minutes at the end of the journey), I would get back into doing that sort of thing. Hence, bike.

And, after the ridiculously long day (Which started with me waking up at half past five to deal with the dog vomiting everywhere – He was fine, in the end, but it was terrifying for all of us) I decided to go for a swim. Well, it turns out that “Three bottles of Lucozade and a flapjack on the train” isn’t exactly the breakfast of champions, so tonight’s swim was slow and disheartening. On the other hand, I’m now sleepy and warm, and have license to go to sleep. Tomorrow, all I have to do is phone a couple of bike sellers (Two more GZ125s, one of them closer to home) and maybe think about ringing around for double glazing, since the house is starting to leak.

And the day after that, I might be going to Cleethorpes on holiday. Three holidays on the beach within the year – Look at me being decadent!

The Illustrated, The Wicked

Today was my regular-irregular meeting with the rheumatologist, Dr D. D is lovely – He remembers what I’ve been up to (Or at least keeps very thorough notes), and fiercly advocates that my GPs are generally idiots, that I need to get into Stanmore as soon as possible, and that I’m right in just being my own physio now.

On the “GPs are ignorant” front – He thinks it’s ridiculous that I get 16mg of diazepam a month, especially since it’s so much better for me than taking lots of morphine for the spasms. He’s sent them a letter to complain and tell them to stop being so ridiculous and hidebound.

On the Stanmore front – He says that I’ve held up my end of the bargain, and got into improbably good shape (He was a bit cautious about asking if I’d put on weight but, when I said gleefully that I had, he enthused about how much healthier and stronger I looked now) so that the NHS should hold up their end of the bargain and get me into inpatient treatment. He was impressed with the amount of swimming I was doing, and said that he wasn’t sure if he, or most other abled people, would do the same, even if they likewise didn’t have day jobs. He’s promised to bother Stanmore for me, so I don’t have to keep doing it myself.

He’s also promised to follow up with the gastroenterologist and the hip surgeon – We both agree that I really want to avoid surgery, but that having someone look it over and give an expert opinion is a good idea.

And then, as seems to be increasingly traditional for me – I came out of hospital and went straight to the bike garage. I’d not been intending to buy anything, but they had in the exact helmet that I’d been looking at previously, reduced to half price, so I bought it. And then I got home, rang someone that was selling a Suzuki Marauder on the other side of the country, and am heading over there tomorrow to have a look at it. Not to buy it – Not even to promise to buy it – but to get plenty of photographs and have a better look at it.

Not sure if this is hubris, or things just all going well for a change.

Tomorrow night is swimming – Definitely looking forward to it, haven’t been since Friday. Six days is far too much of a gap. Admittedly mitigated by spending three days with Best Friend in the gap, but still.

Full Chrome Awesome

I finally passed my CBT, thanks to an incredibly patient and understanding instructor. A six-am reveille, the nervy panic of getting back on a bike, finding myself glued to my leathers by gallons of sweat from sitting astride an engine in twenty-seven degree weather and seemingly endless physically and mentally exhausting manoevres on the practise pad were all worth it for two hours of glorious driving down twisty country roads in a boiling thunderstorm. There’s nothing like lightning flashes and towering blue clouds over a road lost in heat-haze to add a bit of drama to an otherwise fairly gentle and responsible ride. Also there were chickens in the road, and highland cows, and at least two llamas. And many, many tractors, most of them dragging hay-wagons, one of which was about twenty yards away from turning me into the Late Laminated. The most common instruction in my headset was “Is there not a little green light flashing on the panel?” since my only notable problem, by the end, was forgetting to turn the indicator off after a turn.

I was nervous – Really nervous, nervous enough to keep stalling and not make progress beyond about twenty miles per hour – for about the first ten minutes, then gradually my confidence picked up and I started managing the speed limit (or, in the case of national limit roads, managing about what was sensible on them) most of the time, and had my slow-speed control in the innumerable traffic-calming zones down to a tee (Right down to driving around the speed bumps and potholes) by the end of the session.

It was all managed with two short breaks, more to let the engines cool down and check how I was feeling on the bike than to stop myself falling apart in pain. (Thanks to the one-way radio, I could hear M, but he couldn’t hear me. This is possibly useful, since he would have got a stream-of-consciousness ramble of “Fuck fuck fuck fuck AHAHAHAHAAA THIS IS AWESOME fuck THINGY! what the? COMBINE HARVESTER! ooh what a pretty NOOO I’m not ready for the national speed limit FUCK road full of apples OH MY GOD EVERYTHING IS AMAZING”)

My major problems seem to be stalling at junctions (Always recovered quickly enough that I’m not holding up traffic), not cancelling my indicators (probably an overlearn of “don’t look at the instrument panel”) and not quite having the confidence to pick up speed quickly. I also only had to overtake once, a cyclist, so I imagine that overtaking anything bigger or faster might prove interesting – I opted to stick behind a bus which was pulling away from its stop, since I wasn’t confident how big its blindspot was, and there was a yellow bollard island in the middle of the chevrons. Not a terrible choice, but a cautious one.

Next steps… Well, sensibly, the next step is to re-work out my budget, and buy the remaining gear (Gloves, helmet, boots), and buy, tax and insure a bike. This will, obviously, require a mixture of “Saving up basically forever” and “Taking out a loan”. I can square this with myself because, over time, having a bike will both save me money on bus, taxi and train fares, as well as giving me more flexibility on, well, everything. This is what I wanted it for, really – Freedom. Being trapped by a mixture of public transport timetables and the goodwill of my friends is starting to drive me up the wall.

Longer term – The next step is probably to aim to have my theory test done by Spring, so that I can make the most of the long days and drier weather to do my test in, after having ridden over Winter in much harder conditions. I’ll do the New-Bike-Familiarisation with the same school, pretty much as soon as I get the bike itself, then maybe give it a month before deciding what I want to do about extra lessons. I imagine I’ll want at least a few, if nothing else just to make sure I’m not picking up too many bad habits.

But, all practicalities aside; Being out on the bike gave me the same calm, focused feeling as swimming. That’s something that’s worth spending money and time on. Not sure how I can explain it to anyone who isn’t in constant pain, but having a state in which you can be aware of your whole body without being mostly aware of the pain, and – even better – being aware of how well it’s functioning at the thing that it’s doing, rather than being aware of its complete inactivity. I am not being hyperbolic to say that it’s the active version of the passive whole-body-flicker that a morphine high imparts when you’re lying perfectly still and doing nothing but letting your brain wander through the turquoise lights.

I need more of this. I much prefer the feeling of being energetic and productive than feeling like I’m melting into a pile of feathers.

Of course, now I’m suffering for my hubris. Nobody will be surprised that eight hours on a bike has, now that I’ve allowed myself the luxury of feeling it, taken a bit of a toll on my joints. My hips feel great, but my knees and ankles are stiff, the strength is gone from my wrists, my hands haven’t stopped shaking, and my right shoulder has the familiar “Someone has put a red hot steel ball under my scapula” feeling. So I’ll sleep for a week, and then I’ll go bike shopping.


So, my CBT is tomorrow.

I have to be at the meeting point by 7.45am. This means, factoring in transport and medication and stuff, getting up at 5.30. I’ve not, in general, been getting to sleep until about 3am.

I think over the past month or so I’ve really started to appreciate how bad the fatigue in EDS can get – I’ve not felt fully awake in about a fortnight, but I’ve also not been able to sleep either. I’ve tried Nytol to get more sleep, but that leaves me feeling knackered, and caffeine pills to need less sleep, but that doesn’t seem to work either. I’ve also, obviously, tried taking neither. I’ve gone the “Have as many naps as you need” route, and the “No sleeping except between the hours of 10pm and 7am” one. I’ve even tried my usually-successful tactic of “Fuck you, insomnia, I can stay awake for three days with no real ill effects” and the result was still… Well, no more tired, but no more likely to fall asleep either. It’s weird.

I’m just a sort of blurry mess that’s blundering through the days in a daze.

And tomorrow I’m being put in control of a motorbike. Hopefully I won’t feel as bad then as I do now (Today feels so bad that it could be a turning point) but if I feel this terrible in the morning, I’ll cancel and throw my money down the drain.

I’ve rang up to ask if it can be moved to slightly later in the day – Even just an hour later – but I’m not too hopeful.

Paradoxically, I’m also really looking forward to it. I feel like last time I really didn’t give myself the best chance of doing well, and I got too worried by the other riders and trying to compare my progress to theirs – Which was ridiculous, since one of them had ridden before, and the other had enough friends with bikes that, even though he claimed he didn’t, he’d obviously at least driven around a car park a few times.

And that VanVan is still calling to me.

I think my current plan is to try to go to sleep early tonight, then load up on caffeine tomorrow morning, and take it slowly all day. I’m the only one on the course, so if I need three hours of braking and gear-changes in the school grounds before we go out on the road, I am going to have three hours of driving around the school grounds, because that’s what I’ve paid for.

In brighter (literally) news, a science friend has answered my prayers and got me a SAD sleep/wake light, so maybe this bizarre sleepless nightmare will end soon.


I did end up in hosptial yesterday, in the end.

I phoned 111 at about four, and there was an ambulance at my house by half past, with two cheerful paramedics who helped me into some real clothes, fed the dog and sent him to Downhill Neighbour’s house, shared a plate of cinnamon rolls with me, and joined me in my despair when the doctor they called for was completely unhelpful (He decided that the appropriate response to “I’ve taken as much morphine as is safe, and am still in pain” was “Take more morphine then.”)

So, the only solution was to load me into an ambulance at take me to St J. On the way in I was given gas and air, so by the time I was at the hospital I was both no longer in pain, and feeling kind of strange. So when the second of the two paramedics said “Oh, you’ve been playing noughts and crosses on your arm, eesh, you shouldn’t do that” I had no too-much-information filter and replied with “Given the choice between taking enough morphine to competely shoot my liver, and having chequerboard arms, I will always pick the latter” and she winced and looked utterly scandalised, then refused to talk to me for the rest of the transfer. In retrospect – Anyone who pokes the privacy ulcer should expect it to perforate and spray them with unpleasant truth.

I got into the A+E waiting area, was tagged in, then told that there was no cubicle available, so I’d have to wait on the metal chairs. I picked up a book (Harry Potter and the Order of the Phoenix, a good-sized brick to last me through since I’d forgotten to bring a book of my own) and settled in across five empy seats to try to sleep.

It took three hours, of intermittent sleep, reading, and losing the ability to move independently, including some of the most frightening back pain I’ve ever felt, before I was helped into a cubicle where I could lie in a more normal position and take yet more morphine.

More hours passed. I managed to completely panic a nurse by getting her to help me reset a spontaneous shoulder dislocation. I took more morphine, and dreamt about trains.

I was eventually woken up at about 11 by a doctor who, I swear to god, looked like Stuart Broad. Not just “Vaguely tall and blond” but “Looked exactly like the noted England bowling all-rounder.” I immediately developed a speech impediment and tried to look less like a complete mess that was only wearing pyjamas.

He introduced himself, apologised profusely for the wait and the pain, then said;

“Aw no, you’re not going to be wearing underwear are you?”

I went a terrible, pomegranate colour. He offered me a gown.

“You may as well just tie it on like a skirt, to protect your modesty a bit, but I’m going to have to examine your legs and your anal sphincter, that’s done by-”

My sensation of wishing for a less attractive doctor got about a thousand times worse.

“I know. Knees up, glove on.”

He checked the sensation in the legs first, apologising profusely every time he had to set off a twitch in the right leg since it made me fly across the bench and make sad dugong noises, and reported them as “Basically fine”, as well as the usual doctor-that-is-paying-attention response of being fascinated with how zebra legs work (“Your knees go backwards. If I press here, will your leg just keep moving upwards? They rotate a lot further than you’d expect”) Then it was the turn for the spine (“Nice tattoo, what the hell happened to your back muscles, I am so sorry that looks so painful”) He then went and got gloves and a chaperone, got me to assume the position, and tried the DRE. First attempt, I flinched (just through cold and surprise), and the chaperone, instead of being an impartial observer, decided that it was appropriate to grab both of my knees and try to hoick them up further to my chest whilst telling me off for flinching. This resulted in an actual scream of pain, further flinching, and a stream of four-letter abuse towards the cack-handed twat that saw a patient presenting with severe pain and lack of mobility in the hips, and tried to drag their legs around with no medical rationale and no asking for consent.

The second attempt got a “Yep, your sphincter is fine, but your lower back is a mess, which I suspect isn’t news to you.” and he sent the chaperone away to get me a porter to take me for x-rays on my pelvis and hip joint, and also to bring up my last spinal MRI for him to have a look at.

The second after she had gone, he said, in a very calm, measured tone “I’d have kicked her. you could have kicked her, and I wouldn’t have said a word. You don’t touch a patient like that.”

I thanked him, and continued trying to squeeze some life back into my now-dead leg, and he went on his way.

Not long later, I was portered through to x-ray, where the incredibly youthful radiologist immediately struck up conversation, asking how things were going and once again apologising for the long wait.

“It’s not been that bad, but a couple of minutes ago a complete stranger did put his finger up my bottom, so it’s been a bit surprising.”

And without missing a beat she replied with;

“Oh no – the really good looking one? God, I can barely talk to him, never mind… Oh god. You poor thing, it wouldn’t be so bad if he wasn’t just so nice as well…” and then started collapsing with the giggles. I had to join in the giggling, mostly due to be being glad that someone else also saw the ridiculous depth of embarrassment at the situation.

She got the images neded – with the obligatory “Do you have a piercing? It looks like a little planet with rings! And it’s right in the way of the pubic arch…” then retreated to the prep room to apparently die of a giggling fit (It ECHOED) before coming back and taking me back to the waiting bay, where a porter took me back to the main ward.

Not long after, Dr. Broad returned, with good news and bad news – The good news being that it was definitely sciatica, the bad news being that A+E can’t prescribe painkillers for neuropathic pain, and that it has to go back to the GP. He mentioned amytriptalin and pregabalin, and I gave the obligatory groan; Mention neuropathic pain once, and a GP will assume that all of your pain is neuropathic, even if you present with a broken finger.

I told him this, and he agreed, and confided that he’d had sciatica once, which took a while and gabapentin to heal, and then every other injury he ever picked up, doctors had assumed was neuropathic. He promised not to use the word “neuropathic” in the letter, and to also point out that he’d seen me reset a stubborn dislocated shoulder without even thinking about it whilst we were talking.

Once again, the takeaway was basically that I needed to get back to rheumatology, sharpish. And, thankfully, that I wasn’t going to suddenly lose function in the leg and cause havoc on my CBT, as long as I could deal with the pain during it (And, adding the CBT to the four-times-a-week swims, getting a bit of a laugh and a “You really aren’t letting it slow you down”)

Then he offered to admit me into hospital, since it didn’t look likely that I could cope safely at home, with how much pain I was in and how badly I was moving. Admittance would have got me into rheumatology more quickly, would have got me fitted for a better mobility device (probably a walking frame or a wheelchair) and would have, obviously, relieved me from the pressure of having to prepare my own food or do my own paperwork for a few days.

I had to weigh it up really, really carefully. From where I was, there was no downside to it. Apart from the obvious – Having to do more paperwork with the DWP, and possibly having my benefits cut whilst in-hospital. So I didn’t take it. But the offer is, apparently, there. I suspect that when someone turns up in this much pain and with this much loss of function, but still alone, there’s probably cause for concern.

Overall, a bit of a mixed bag. I’m back home, still in as much pain as when I started, but I know what the problem is, and that it’s not going to get noticeably worse. I’ve slept most of today (It’s taken me about eleven hours to write this) and I’ve missed both yesterday’s and today’s swim. This is probably about par, really. One good paramedic, one bad paramedic, one good nurse, one bad nurse, one good doctor, one giddy radiologist. Letter sent to GP yesterday, phone message left with rheumatology today.

I’ll be fine, I always am.

Fantastic Plastic Machine

Swimming turned out to be a temporary reprieve. I am now in so much pain that I can’t do anything but lie on my back, with my knees elevated, and ties at my hips, knees and ankles. If I turn my neck to look at the TV, it twists my back and I end up in pain. If I lift my head to eat or drink, it moves my hips and I end up in pain.

My right arse cheek has gone numb, as has the heel of my right foot. It feels as it my entire pelvis is being crushed in a vice, or possibly twisted.

Added to this is the unrelated problem that I can’t move my right arm because my whole shoulder girdle has gone to pieces.

So I’m in awful limbo, using speech-to-text, staring at the ceiling, in a constant 5 of pain, that spikes to at 10 every time I so much as breathe too heavily.

And Dearest is in Manchester. So I’m settled in with the landline, a bottle of Irn Bru that i can’t lift, a shirt that I can’t even get into, and the horrible suspicion that I’m going to need to call for an ambulance.

Primarily Rats

So, Friday swims are different from weeknight swims. They’re the one night where the open session isn’t laned, making it impossible to really swim, so I keep it out of my usual training rotation, saving it instead for when I need to float for therapeutic purposes but not to really stretch out. As such, I barely ever swim on a Friday night.

After yesterday evening’s phone call to the doctor, I was emboldened to go for a swim.

Tiny steps. It took twenty minutes to walk the hundred metres to the pool, and another fifteen minutes to change into my fastskin. I got into the water to find about a dozen people in it with me – One large family including two children, three men swimming lengths despite the lack of lane ropes, and four women, one of them also on crutches.

So I started swimming, gentle lengths, occassionally getting out to practice a dive (Encouraged by one of the women in the big family, who was trying to dive as well) but mostly just gently toddling around in the water. When I got too pained, I just floated on my back in the middle of the water until I felt better. I surface-dived and walked around on the floor of the pool, enjoying being weightless. Of course, throughout the whole of this I was taking little sips of morphine, keeping my levels level without any sudden huge hit to the system.

Lifeguard L was minding my morphine for me, and was kind enough to point out that, even by my standards, I looked like death warmed up. I admitted that I was only there on doctors’ orders, and would rather have been at home. She was unsurprised.

It was whilst I was taking a dose, after having actually screamed in pain as something in my leg went “clunk”, that I got accosted by a fellow swimmer.

“Is it arthritis then?” she asked. I gave her the blank look that I reserve for these situations. She asked again; “Your problem, is it arthritis?”

I decided to try honesty. I have a “This is what my condition is” speech for small children. Adults don’t get it.

“It’s called Ehlers-Danlos Syndrome.”

“Ohhhhhh” she said, “That must be horrible.”

(“Yes,” I thought “Having to spell it to paramedics is always fun. ‘is it A-y-l-‘ no no no ‘E-i-l?’ augh just give me the pen…”)

I know it’s an attempt at a sympathetic noise, but it’s irritating. I could have said “It’s Shonan-Shinjuku Syndrome” and she’s still have said “Ohhh, that must be horrible” even though the Shonan-Shinjuku is a heavy rail service between Yokohama and Tokyo.

“Do you come swimming often then?”

“Four times a week, or so.”

“Ohhhh. And you do all right?”

“About three kilometres a time, on a good day.”

For most people at the pool, this is an unimaginable distance.

“Ohhhhh. You’re very brave coming here on your own.”

Her every word dripped with pity and morbid fascination, and she punctuated every statement with looking me up and down as if she could discern what was wrong with me by staring.

Once again, I come away from a conversation feeling annoyed and patronised, this time with the added bonus of feeling as if I shouldn’t go swimming unless at perfect fitness because people will jdge me for it, and she came away feeling as if she had really connected with that poor cripple.

I got back to my swim, and eventually my hip – The bad one, which had been causing all of the problems – Gave another almighty crack, and I ended up standing in the midle of the pool, on one leg like a malevolent flamingo. At first, I just nodded and smiled at Guard B, who was now on-duty alone. A few minutes later he asked me “Are you all right?”

I paused for a couple of seconds before replying.

“I think I’m stuck.”

He looked panicked.

“Not badly stuck. One minute…”

I hopped across the thankfully now-emptying pool, hooked onto the side with my elbows, and explained further;

“So, my leg has sort of jammed in this position. I have to get it back down, and the safest way to do that is going to be here in the water. If I collapse, pull me back up.”

And then he admitted it; “I’ve worked here for a year and a half, and I’ve still not been in the water. I’ve got a party tonight, and I really can’t get my hair wet.”

Thankfully, after I came up from my faint, we had a good laugh about this, and how his night out would have been suitably improved by having wet hair and a story of heroism to get him free drinks. I also think this was the thing that clanged my hip back into shape, and why it doesn’t hurt as much today. It probably also confirms that I do have to swim basically daily, or I end up in so much pain I can’t even lie still.

Then he said the thing that was terrifying;

“You know, my knees dislocate when I play rugby, like the kneecap comes off sideways, just at random. Always need the physio to come and look at it, needed hospital a couple of times when it didn’t just pop right back. And I always think of you – I’ve got no idea how you’re here every night, with joints coming out every few minutes. It must wreck. I’m a complete wuss for pain, I’m always thinking my back hurts and stuff.”

I asked the question;

“Hey, how far back can you bend your fingers?”

He demonstrated. I winced, then told him that there was a point to my asking stupid questions. He gamely went through the whole Beighton warp, and scored about as highly as I do.

Thankfully, he already has a physio, but he’s now also taken on-board that he should go and see his GP. He’s a nice lad, and obviously extremely fit, so he’s in a good position to stay fit, and other than the knees he’s not symptomatic, and I have to remember that most bendies either stay sub-clinical, or have their problems restricted to one or two joints. But I worry.

All in all, a strange evening.

Heavenly Drained

So, after three days of progressively losing the use in my leg and taking higher and higher doses of morphine to try to cope with it, I finally cracked about half an hour ago and phoned my GP.

I described the problem, and how I couldn’t walk at all, or stand up straight, and how it had been around a seven all day, spiking into the horrible static off the top of the pain scale whenever I did something other than lie perfectly still with my knees elevated and tied together, and how I couldn’t take any more painkillers for it.

Knowing that I exercise a lot, he asked “When did you last go for a swim?” and I replied “Eight days ago.”

He gave a thoughtful little sigh and said “You’ll feel better if you go for a swim. Go for a swim tonight or tomorrow morning, that’ll loosen it out, and you’ll feel better.”

I feel a bit like the biblical cripple being told by Jesus to “Stand up!”

But, well, who am I to refuse? I’ll have to get a lift the hundred yards to the pool, and a lift back, and be winched in and out of the water like a sea creature, but it’ll be worth it.