Violations

Yesterday was shit. Just really, really bad.

Started off with the social workers, which was just awful in its own right. As much as they say that it’s all up to me what happens and things like that, I feel like I’ve been sort of trammelled into things.

The vague plan so far is that I will get a “Direct Payment” into a “Managed bank account” – Meaning that I will not see the money, so I won’t be frustrate and resentful that I’ve “got money” that I’m not allowed to spend on things that’d immediately help me, but only on specific help that other people think that I need.

It was a key point of mine that I resent the sense of people meddling in my affairs and telling me what to do. I know that, logically, the same thing is happening, but if I can ignore it, I won’t give increibly long lectures to anyone else about how it’s patronising to have a fixe budget for my care, but to have someone who is not me deciding that I absolutely need a personal assistant more than, for example, new brake pads, or a bigger light therapy light.

From that, we got to actually deciding what I needed. Broadly speaking, the plan was to have someone arrive at about 9.30 or 10 to wake me up, rearrange the bed into a “sitting up to work” posture, make me a cup of tea and a flask of soup or curry to put by the bed for dinner, then leave again. They’d then come back in the afternoon if needed, to empty the urinal, possibly sort me another snack, and give me a hand doing the normal household chores that I can’t do, like washing dishes or sorting laundry, or possibly on good days to do things like go to the market or set up the workbench for sewing or similar.

They then decided that I would probably need combined funding from the NHS to provide medical care, because the basic stuff that my friends do on a day-to-day basis is apparently so difficult and unusual and viscerally upsetting to the average person that they’ll need a nurse to do it. Even though I know that a nurse’s response would be “Go to A+E”. So I’m getting a nurse that also doesn’t mind washing hair and cooking and cleaning, rather than a gentleman’s gentleman who can also reduce dislocations. Probably.

I don’t want this. I viscerally do not want this level of interference in my being, even as much as I know that on a bad day, it’ll help. I worry that they’ll either decide that what I want is taking the piss, and thus withdraw support, or that they’ll decide that they want to push and insinuate themselves into being there every day, even on days where what I want to do is be out and away. I do not enjoy the company of other people, and I worry that there’ll be an implied contract to be friendly and make small talk, which I am not good at. In total, they were here for over three hours, and it was exhausting and upsetting.

And then yesterday evening I ended up gong out to a new person’s house and, for assorted reasons, having a horrible panic attack that resulted in me riding up to Best Friend’s house at midnight and collapsing onto the settee in his living room and wibbling and making depressed, terrified noises until I was calm enough to get back onto the bike and ride back home. I was still paranoid enough that the taxi that decided to follow me three quarters of the way home, two inches off my back tyre, really put me further on edge. As much as my acceleration was better, I wasn’t willing to break the speed limit, but he was – So he’d shoot up to fifty to catch up, then slow down to thirty again when he was completely filling the mirrors. Considering that I took an insanely convoluted and little-used route, he was definitely doing this for “fun”.

On the other hand, driving across the city in the pitch black, with half the streetlamps out, and barely any traffic, as the ground frosted over and the sky cleared to reveal millions of stars, with the view out over the valley as I got nearer to home… That was nice. That was worth it for the whole rest of the shitty day.

Today I’m in pain. I’ve got a short deadline that I’m not going to make, my tutor hasn’t responded to my email asking for an extension, my legs and shoulders and neck hurt in a way that suggests they’ve been too tense for too long, and I’m just not feeling great at all.

Advertisements

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.

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…

Zugzwang

So, a few days ago I posted this deliberately-upsetting video to YouTube;

 

 

Which quickly got found by a big Dr Blog, cranquis.tumblr.com, ran by an American medic called Dr Cranquis (It’s very good, he’s very funny and obviously a very good doctor too).

 

And this in his response made me jump out of my weird, stretchy skin;

 

“When EDS is taught, the emphasis usually is about the plasticity of the patient’s connective tissue, the genetic transmission, the “double-jointedness”, and the risk for blood vessel ruptures. There’s always at least one old-timey picture of a “circus Plastic Man” stretching his neck skin way out, for some reason. But while the “easy joint dislocations” are mentioned, I don’t recall anyone emphasizing the (obvious, in hindsight) risk this would create for excruciating pain.”

 

Because this exactly reflects the complaint that I keep making; Medical teaching programmes and textbooks, when they go into EDS at all, always emphasise the visually-dramatic. They go for the most obvious even-my-dog-could-tell-you-that’s-luxated luxations, the stretchiest stretchy skin, the most pronounced micrognathia, enlarged orbits, and visible veins and the most extreme weirdly-proportioned habitus. And they take the photographs in such a way that they show up the criteria as much as is possible, foreshortening and back-lighting and putting in perfect profile, whilst twisting the limbs and fingers around into the most extreme examples of the Beighton warp.

 

So doctors learn by seeing the most blatant, and not the most common, cases. They don’t see the tall girl with long fingers who’s always clutching her back in pain but insists that it’s just overtraining. They don’t see the boy with huge blue eyes, whose hips click a bit when he walks but in ten years’ time he’ll be in a wheelchair. They don’t see the rugby player that keeps “popping” their shoulders whenever they stand up from the scrum, that lives in a constant cloud of Deep Heat and freeze-spray. They definitely don’t see the forty-year-old with visceroptosis and a uterine prolapse, but otherwise no symptoms other than sore hands that they put down to old age. They see the depressed teenager who can’t eat, who claims to feel full after two bites of a pasty, and has a drawerful of laxatives, and they insist that it’s an eating disorder even when he cries over how thin he’s getting. They see the toddler with fist-sized bruises, and they call social services, and refuse to believe that they really do just keep falling over and that the parents are just as worried as the doctor. They see the pain episodes, like the one above, and say that it’s drug-seeking, psychosomatic or exaggerated, because EDS is just that thing that makes you a circus freak, isn’t it?

 

We need some kind of campaign that says that the reason that a lot of people don’t see zebras is because we look and sound basically like stripey horses.

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.

 

 

The vultures are in our hearts, waiting for the clarion call.

A couple of days ago, I was linked this video by someone who really wanted to help me learn how to treat Ehlers-Danlos Syndrome without taking any medication for it. I found him in the #MedicatedAndMighty hashtag on Twitter, where he was resolutely telling people that any benefit that they gained from psychiatric medication was “fake” and “switching off parts of their brains” and seemed very confused as to how neurobiology worked.

 

Although he hadn’t heard of Ehlers-Danlos until I told him about it (He was telling me that I really, really didn’t need opiates, really, at all) he very quickly became an expert through watching Youtube videos, and linked this one to me, to educate me better in just how wrong I was to be following a proven regimen agreed on between myself, a hypermobility specialist and a dedicated rheumatologist, borne out by several years of experience and decades of gradually-improving clinical guidelines backed by large-scale trials and even larger scale observations.

 

So, this video;

Here’s the key points of the video. The numbers are time-stamps, and the bulletpoints are a precis of what’s being said.

3.45 – Give up all forms of sugar to reduce inflammation. Give up fruit, bread and potatoes.
4.30 – …Apart from coconut sugar and honey, they’re good sugar.
5.27 – All diseases, including diabetes and cancer, are caused by inflammation
5.50 – Stop eating gluten! Gluten is inflammatory.
7.10 – Balance your body’s pH by eating raw fruit! Meat and dairy will make you acidic.
8.10 – Juice things! But you’re avoiding sugar, so don’t just juice fruit, juice carrots.
8.40 – Food is mentioned as being “Ayurvedically satisfying to your stomach”
9.40 – Claims that leaky gut (ususually permeable intestines) is due to “Rips and tears and holes in your stomach, causing food allergies”
11.00 – Talks about “raw” probiotics.
11.50 – Claims that Cod Liver Oil lubricates the body from the inside.
13.30 – “Buy herbs from Whole Foods because the staff are very knowledgeable about herbs.”
16.15 – Stay away from anything with Wi-Fi, it’ll inflame you, so always use your laptops plugged in.(This goes on, at length, encompassing phones, microwaves and TVs too)
18.45 – “Trust your gut, not your drug-pushing doctor”
19.15 – “Go to a naturopath, they’ll show you alternatives to all the medications that you’re on!”
20.15 – “Nutritional psychiatrist” giving out diet plans to “Build up your happy chemicals after so much surgery”
20.30 – What’s The Mood Cure by Julia Ross? Feels like this needs investigating.
22.00 – Acupuncture. For everything.
22.50 – Naturopaths, again, claiming that they’re trained in genuine medicine as well as woo.
23.45 – EFT, which is tapping on your “energy points” until your feelings come out. Hmm.
24.50 – “Avoid inflammatory foods” The same woo as the EDS society was pushing a while ago, hmm.
25.00 – “Nightshade foods are almost poisonous to our body” (At least they are all, broadly, really related to nightshade – Tomatoes, aubergines, etc)
25.50 – Avoid foods containing lycopene.
27.00 – “Turmeric cures cancer, but I won’t say cancer, I’ll say ‘Starts with C and ends in R’ because I know there’s a Cancer Act out there…
28.30 – “Processed food is the devil, our body wasn’t meant to process it.

And this just makes me really, really angry, that charlatans prey on the pain and horror that people with chronic conditions have, and trick them into believing this kind of bullshit soup. She has good points in there (Mostly “Stay active, if you can, gentle stretches and muscle building” and “Get therapy, if you can”) but they’re lost in the scattergun of not eating asparagus and keeping your mobile phone in a locked drawer.

 

I am scared that she’s wasting time on therapies which make her life arbitrarily more difficult, and ignoring ones which could make her life genuinely better or safer. VEDS is scary, it’s the monster under the stairs for everyone with an EDS-HM or EDS-Classic diagnosis. I understand the urge to just pull up the fluffy blanket and hide under it.

 

I know that many of the things that she’s talking about can be fun, or can give a sense of much-needed control in the face of a horrible illness. I know I do a lot of things which aren’t medically necessary, which I consider to palliate my symptoms, and some things which straddle the boundary between “medically necessary” and “personally soothing”, as well as things which are purely medicinal.

 

For example – On weeknights I swim, then I take my evening medication, then I lie in bed and read the next chapter of the Aubreyad in low-light whilst drinking grog. If I miss one of these events, I will feel worse. But let’s look more closely at them.

 

I swim: This is both physical therapy to build up muscle tone, and something which gives me an enjoyable sense of achievement.

 

I medicate: This is necessary in the management of EDS – Diclofenac to reduce inflammation, Lansoprazole to protect my gut, Diazepam to prevent spasms (when needed) and morphine to prevent pain and poor-quality sleep.

 

I read: This is something which is for enjoyment, and it gives me something to concentrate on other than my symptoms as I begin to fall asleep.

 

My methods here aren’t universals (I imagine that pilates or jogging or rugby would work as exercise, a different cocktail of medications would suit, and reading could be replaced with good food or sex or TV as a relaxing end-of-day ritual), and everyone will have to find their own balance, which may also change over time.

 

But, and here’s my point, more than eight hundred words into the post – People should recognise what is medicine and what is just soothing.

 

I adore my TENS machine. It is zappy and fizzy and feels nice on sore muscles (Et sur la moule, ehehehehehe). It is not medicine, it is just nice.

 

I hate feeling flattened by diazepam. It feels like being stuck under a foot of snow, in a fog bank. It is still medicine, since it stops the dangerous spasms that make my condition worse.

 

I really dislike courgettes, they taste like sewerage. They are not medicine, so I do not eat them.

 

I love having codeine skin. It’s a side-effect of taking morphine, which I take for pain relief. Morphine is medicine.

 

This is another reason why I’m such a firm advocate of the NHS remaining as a free-at-the-point-of-use service; It’s easier to crack on with a course of treatment that’s taking a while for you to feel the effects (Physio, NSAIDs, most talking cures, basically all antidepressants) when you’re not paying out-of-pocket for every week where “nothing happened” – That is to say, loading-in periods, stabilising periods, and even just the time it takes to work out appropriate dosages. It applies to treatments that don’t work as well – After the fourth course of drugs that just turn your spit green and make you want to eat a lot of mustard, it’s easier to feel inclined to try the fifth if you’ve not had to pay for all of them, and aren’t increasingly feeling like medicine is just emptying your wallet along with wasting your time.

 

That’s the big problem with alternative “medicine” – It almost always gives instant “results”. They’re not real, measurable improvments in your condition, of course, but they’re changes that you spot. You have to think before you eat, so any tiny change in your symptoms gets attributed to the food, and magnified along with it, because you expect a change to happen. You feel better immediately after the acupuncture, or acupressure, or gentle tapping, because you’ve spent an hour in a warm, comfortable studio being touched and listened to.  Direct human attention is a powerful drug. As a friend once pointed out to me, even in a non-sexual context, a bit of faffy gentle twiddly massage from your partner can feel nicer than a really competent one from a physio, because it’s just nice to have that sense of intimacy and care.

 

And alt-med practitioners really cultivate that atmosphere of intimacy; Without it, they’d have no business, because other than the placebo “It feels nice!” their art does nothing, and without that sense of “Oh, but my acupuncturist is so sweet and kind, they’re like a friend!” you’d be a thousand times more likely to realise that they’re just selling snake oil, never go back, and tell your friends not to waste their money there either.

 

So that’s why alt med and naturopathy aren’t just harmless fun. They’re deliberately selling “relaxing” as “medication” and that’s unethical.

Fire

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.