Assortment

Two medical-related phone calls yesterday. This is basically me settling in for Winter, when my physical and mental health both go from bad to worse – I take about twice as much pain relief and antispasmodics in winter as I do in summer, my sleep pattern goes to pieces, I eat less often and less well, usually coinciding with my guts slowing down, and I get much more upsetting and graphic suicidal thoughts, not to mention the increase in self-harm for both pain-relief and mental-illness related reasons.

The first was to Rheumatology, to find out what was going on with Stanmore and what was in the letter that had been sent to the GP.

First is the bad news – It looks like I’m having to arrange that Stanmore referral myself, since once again it’s gone around the full cycle of “Nope, nobody knows what it is, or when, or where, or anything.” without making any progress. So I have no idea how to do that, or even if I can do that. By the original reckoning though, it’s three months overdue, which is starting to get ridiculous. I’ve been told to “Just chase them up” with both my GP and Stanmore, which as far as I can tell basically means nothing.

(On this note – Anyone who has any experience in following up referrals, how does one do it? I’ve in-theory got letters from my GP, Rheumy and UCLH Hypermobility all saying that I need to be referred to Stanmore, and all of the above claim to have sent letters to Stanmore to refer me as well, multiple times. So other than just turning up at Stanmore with a suitcase, what do I do next?)

Then is the worse news – The letter that was supposed to say “Plesae give this patient more diazepam” instead says “Thank you for giving them a small amount of diazepam”. These are not the same sentiment, at all.

So I nearly went into my GPs practise and looked like a drug-seeking liar, because I would have said “Dr D said to give me more diazepam” and they would have read the letter and said “No, he didn’t”.

So I’ve booked an appointment with my GP for the 8th, at 16.50, and I had the strangest exchange with the receptionist whilst doing so.

“Who’s it with?” I asked, basically just checking that it wasn’t with Dr Rh, who I personally consider to be not-a-doctor and more like a stale breadcake in a suit.

“It’s with Dr [Name unclear]”

“Who?”

“The Lady Doctor”

Happy at least that this precluded it being with Dr Rh, I hung up. But this baffled me. Of the people in this practice, I’ve got a clear mental picture of about half a dozen of them. Dr Rh is, as I’ve said before, a winnet with legs, Dr Ch is sympathetic and keeps a casual eye on my mental health, Dr R is viscerally horrified by my dislocations but willing to work with me to hack the most efficient possible use of my medication and the system, Dr L is great for mental health but scared of the drugs that I take, Nurse Practitioner Rs is a lovely person and technically very competent, but knows when she’s stumped and isn’t too proud to refer me up the tree when needed. And I don’t think I’ve ever sorted these people by sex. In fact, I can’t think of any situation where I’ve used “Does this person have matching genitals with me?” as a selection criterion.

This is probably all complicated by the fact that I’ve barely ever socialised with people who are the same gender as myself. I don’t seem to consistently feel a gender in the same way as most people do (Though for about three months near the start of this year I felt much more definitely “man!” than usual, which was weird. I usually just use it as a shorthand for “I am a fairly masculine person” or “Most people consider me to be masculine”) so I don’t have that immediate sense of solidarity with people for being the same gender as me that a lot of people seem to get – Especially in fields which are skewed in the direction that makes them a minority (For example, women in physics, men in childcare, etc).

But anyway, that’s all by the by. I’m seeing a doctor on the 8th, it’s about my sleep pattern, and I think it’s a doctor that I’ve not met before, so this could be really complicated.

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The horns the horns the horns…

The destruction of a perfectly good word;

So, when I was about fourteen I had a friend who was chronically ill, and she was in hospital quite a bit. One of the things that happened was that she got impacted bowels sometimes from being, well, confined to a hospital bed by the sheer amount of gubbins she was hooked up to. One day, when we were there, she was gleefully celebrating having had a massive bowel movement – “Litres and litres of the fucking stuff” as she put it, watery diarrhoea brought on by a bad takeaway that we’d brought in the night before. The nurse, who was not all that much older than us and was hanging around, put the theory that she had been cured by a lamb jalfrezi soundly to bed with a metaphor;

“You know the Tyne Tunnel, right? There’s always traffic jams, the lorries backed up all the way across the river. So you get to the roundabout on the way in, and there’s nothing but motorbikes…”

Thus meaning that, regardless of all else, I can’t use the word “motorbikes” without a puerile little giggle. Which explains my many circumlocutions to avoid talking about the plural of a motorcycle. Difficult when owning one, and having friends with more than one motorbike, and more than one motorbike-owning friend.

 

Motorbikes morotbikes motorbikes. Aaaaahahahahahaa.

 

But what else is this about – Well, it’s that friendship group. To a greater or lesser extent, we were all goths. Or enough into metal and poetry and victorian gothic literature and tattoos that the difference was negligible. And we were probably the most tightly-knit large friendship group that I’ve ever been in, beyond even the normal teenage things.

Could argue which direction the horse and cart are travelling in here, but since we were a group that read books and listened to music that adressed things like depression, physical illness, and loneliness we were both more ready to recognise it in each other, and to accept people who were suffering. When our friends were depressed, we could name it and knew the beginnings of how to deal with it. We knew that, sometimes, “I don’t want to be around anyone” really meant “I don’t want to be around anyone” and not “I hate you personally” which was a step up from most teenagers. We knew about the complicated relationships between the Byrons and the Shelleys and their friends, so we knew that “You slept with my partner!” didn’t necessarily mean that the friendship was over, or that the pair was doomed, or even that monogamous pairings were the answer to everything. And, of course, we were teenagers, so we got everything wrong, but we’d look for frameworks within our culture, and lo, there were plenty.

And now there’s another study out saying that teenage goths are more likely to be depressed, and that this means that goths should be watched more closely than other subcultures. And, well, that just feels wrong. I don’t think that being a member of a subculture, even one that does go digging into the dark, is going to trigger a mental illness. I think that, if you’re already depressed or heading towards a mental illness, finding a subculture where depression is considered to be just part of the spectrum of human experience rather than being either the bogeyman or something to be joked about is pretty much a relief.

 

Unrelatedly; Just got my 666th comment!

Zebra Senpai

This will probably be a car crash of a post.

I’ve been really thinking about Japan a lot lately – Something about the particular kind of crisp cold we’ve had lately reminds me of autumn in Tokyo, the perfect kind of weather in which to put on some fingerless gloves, pick up a hot coffee in a can from a vending machine, and wander aimlessly around an almost-impossibly busy city, listening to the 16-bit twinkle of pachinko machines and the rush of trains overhead and underfoot, breathing in the smell of falling ginko leaves, and generally revelling in the sheer neat, flowing, well-organised urbanness of it all.

It struck me, comparatively recently, that when I’m sad about not being in Japan anymore, I don’t just miss Japan, I miss being ablebodied, since that was the last year that I managed to “pass” in.

Every Monday, I’d come home from my shamisen lesson and spend the afternoon resting my hands because my wrists hurt so much. In the evenings, after Dearest was out at work, I’d Skype with one of my pen-pals, and I’d do it lying down because sitting upright was so painful. During the day I’d still walk tens of kilometres, stand for hours on trains, teach six lessons a day in Toda whilst spending my dinner hour cycling around the nearest towns, or shuttle back and forth between Tokorozawa, Gotanda and Hasune, or (after the earthquake) donning steeltoed boots and a hanten to hep re-setting fallen gravestones in my beloved Zoushigaya-reien, but I was pretty much already obviously more ill than I had been before I left.

I returned home in the September of 2011. By the spring of 2012, I was taken to an occupational therapist by the then-new friend that I now call my sister, to get help for the pain in my hands. I degenerated for another year after that, until I had to admit that the pain was everywhere and all of the time. I was given naproxen and codeine in May of 2013, a tentative EDS diagnosis in August, my first bottle of morphine in October, then finally saw the specialist to confirm it in July 2014.

But that’s not the whole story.

Whilst I was in Japan, a then-peripheral-internet-person-I-knew was in Canada, getting a diagnosis of EDS. This was the first I’d heard of it, and my response was something along the lines of “Oh god, hope you’re all right” [Let me google this…]

She had comforted her followers with a brief “I know that many of you will now be thinking “Do I have EDS too? And the answer is probably not – You’d have to have been really sick, for a long time, so you’d know. And it’s really, really rare.” but I looked at the list of symptoms, looked at myself, and quietly filed it away as “This sounds a little bit like me.” I met another of her friends, also with EDS, and reading about their day-to-day life made me think “Yep, this really does sound like me”.

On the same day in November in 2011 that I’d met my sister, I also met Best Friend. We got on like a house on fire from the start, enough that the friend who’d introduced us to each other admitted that he’d deliberately kept us apart for about five years because he knew that if we met, we’d wreak havoc, love each other unto death, and (subtext) would completely push his nose out of joint in favour of the other.

The fact that the old schoolfriend who had tried so hard to get us not to meet never gets mentioned in my blog is probably telling – This was one of the last of his self-centred bullshits, in which he’d manipulated, undervalued and generally treated-as-things the people around him.

Best Friend is a creator of things – Better than I am now and better than I ever was – and I found myself always making excuses for my current lack-of-creative-output. He knew my hands were ruined, he was the one that first sprayed the inside of my wrist-braces with an inhaler to stop me from scratching off my own skin, and he was pretty much the only person to offer reasonable condolences at the loss of their use. And, honestly, encouraged me that it was worth trying to keep working with them, even though it hurt and I was producing work that I was ashamed of, because at least it was something.

Anyway, about a year after first meeting Best Friend, in the middle of a month-long blizzard, I spotted a symptom in him that could be nothing other than EDS. I pointed it out. He went into treatment and, soon after, was diagnosed. In return, he pushed me into also going back to a doctor, and thus we went through diagnosis and treatment together.

At some point it occurred to me – Almost every zebra that I know has their zebra-senpai, the person who usually knew them well enough to say “Look, having put together all of the things that’s wrong… This is what you need to say to a doctor.” My two online friends did that for me, then me and Best Friend did that for each other, then both of us have done that in-turn for other people. Looking back even further, at least one of the two online friends credits someone else with putting together the jigsaw pieces for her first, before her doctor got to her, and I bet that if I asked some of the many other zebs that I’ve now met if they has a zebra-senpai, they’d be able to name at least one non-doctor who put the idea on the table first.

And this makes me worry. I worry because I am part of a well-educated, accessible, tolerant community who very much look after each other and aren’t afraid to go digging through PubMed to make sure that they’re helping correctly. And there are definitely zebras out there who don’t know anyone else like them, who don’t have internet access, who don’t have the background to stand up to a doctor and say “No, you’re wrong and here’s why.”

There’s thousands of zebras out there who have no idea that they’re zebras. They think that being tired all the time is normal, and falling over when their hips fail is clumsiness, and that hand pain and loss of function is just overwork, and probably a dozen different just-so-stories about why their back hurts and shoulders don’t always move right and why they only eat every third day and defecate once a week.

If anything needs an awareness campaign, which I’m usually so sceptical of, it’s EDS.

Glimmers up the sun

I’ve now got enough data in my sleep tracking that I’m starting to see a pattern;

sleeptimeofday

On one hand – It’s slightly chaos, I don’t sleep anywhere near enough, and if I nap during the day I don’t sleep well at night (Wait, being honest – If I don’t sleep well at night, I nap during the day. that’s the direction of causality, not the other way around).

Now, this is also the most stable time of year for my sleep pattern. In winter, the nights are too long, so I often end up completely nocturnal as I fall out of synch with everyone else and don’t have regular enough daylight cues to pull me back into phase with everyone else, and in summer we never get beyond maritime twilight, so I end up in a biphasic sleep cycle, taking a short nap just after sunrise then another short nap just after noon, missing the hottest part of the day.

Now, the above chart looks like chaos, until I re-divide the days so that instead of going from midnight-to-midnight, they run from falling-asleep-to-falling-asleep.

sleephourcycle

Pretty much a clear 25-hour cycle, other than on days where I’m notably sleep-deprived. Which suggests something like failing to “reset” whilst I sleep (Managed by most people by external cues, light levels, temperature etc, which make the body produce/regulate melatonin and cortisol and all that appropriately).

At this point, I expect to hear screams of “BAD SLEEP HYGIENE! HAVE HOT MILKY DRINK YES MILKYHOT MAKE YOU SLEEP GOOD NAUGHTY ZEBRA NOT NO SLEEP HYGIENE MILK HAVE HOT YES NOW”.

So here’s my “going to sleep” and “waking up” rituals.

I wake up when I wake up, usually to one of a series of alarms set between 8-9am and immediately have my morning medication. From that point, I have a two-hour window to have all the caffeine I want for the day, never more than 200mg, usually pills or an energy drink, along with a cup of tea. If I can’t physically get out of bed and go downstairs, I at least reconfigure the room into “daytime” settings – Put my desk on the bed, open the curtains and window, switch on the radio. I don’t “lie in”. I have my last cup of tea two hours after I wake up, to ensure that there’s no caffeine in my system by the time I want to go to bed.

Within an hour of sunset I do an hour of light therapy, then after that I go for a swim. After my swim I don’t switch on any screens (unless I really feel that I need company, in which case I use a yellow screen-mask and talk to a few people on Twitter), and generally avoid artificial light other than a low night-light so that I can read. At this point I might have a hot oat milk, some valerian or hops, or sometimes a small glass of port. An hour before I think I need to go to sleep, I absolutely turn off all screens, set my night light to “sunset”, then read something familiar and non-exciting until it’s too dark. I then try to sleep.

Right – It’s not perfect. I have a glass of port once every few weeks, I rely on either diphenydramine or valerian/hops to get me to sleep if I want to go to bed at a “normal” hour, and likewise need caffeine to wake up, I don’t always leave my room first thing in the morning (Because my mobility isn’t fantastic) and sometimes I need to use Skype or Twitter to keep me company if I’m in pain or anxious, which does mean having a screen switched on. But I think I have the best “sleep hygiene” that someone can possibly have in the real world, without completely structuring their whole life around it.

And my inability to sleep at normal times has made a bit of a mess of my life – I’ve lost most jobs, eventually, due to not being able to arrive in time for the morning shift (This is why I gravitated to nightclub work) and if I wake up earlier than I naturally want to I’m groggy for the rest of the day – regardless of how much sleep I’ve had. If it’s before sunrise, even if I wake up naturally, I feel sick for the whole day and can’t keep food down (Great in winter, obviously, when it’s incredibly difficult to wake up after sunrise.) I’m difficult to share a bed with, since I often come to bed really late, or get up early, or just don’t sleep properly overnight at all. I basically can’t plan to go to things which start before noon, and often I can’t plan to go to things in the evenings either, in case I’m in one of the weird (thankfully rare) phases where I go to bed in the middle of the afternoon and get up jut after midnight.

I think once I’ve got about two weeks’ more data, I’ll take it to my GP and ask them to do something about it.

A Day In The Life: Persephone’s Boat Trip

00.00 Happy midnight, happy Mabon. Fell asleep soon after in a morphine haze, trying to stop the pain in my back from making me throw up.

07.30 – Wake up, realise that right shoulder is dislocated.

07.40 – Fall back to sleep.

10.05 – Wake up, shoulder still dislocated. Attempt to reduce.

10.12 – Left hand begins to hurt mysteriously. Take morphine.

10.14 – Try to repair left hand, somehow manage to make it worse.

10.17 – Freezing cold pain shoots up outside of palm and into last two fingers. Go looking for a hot water bottle.

10.18 – Dislocate hip walking downstairs, fall, jar spine, lie at foot of stairs feeling sick and dizzy.

10.25 – Reduce hip, as well as possible, stand up, go and find kettle.

10.41 – Nearly spill kettle on self as filling hot water bottle. Sublux both wrists in the process.

10.56 – Retreat to bed, switch on TV.

11.08 – Back pain reaches the point where I just surrender. Lie flat on back, close eyes, rest arms by sides, start crying.

11.30 – Drifting in and out of conciousness. Realise that the only reason I’ve not noticed left clavicle problems is because right clavicle is having the same problem.

12.00 – Must have been “out” for quite some time. Take more morphine, let myself sink into the dark.

13.10 – Woken up by right scapula trying to climb around to front of torso. Take more morphine.

13.15 – Right glenohumeral joint fails, takes series of movements to fix.

13.28 – Back pain and wrist pain collectively “top over” into nothing but static. Vomit into pint glass.

13.32 – Realise that right wrist is completely dislocated. Reduce with opposite hand.

13.49  Back pain starts to get towards being vomit-worthy again.

13.50 – Right shoulder falls apart.

14.09 – Right shoulder still in pieces, spasms continue across whole back.

14.11 – Loud crack from right shoulder, shoulder falls two inches, arm stops moving.

14.12 – Pain in left hand blossoms up forearm and down fingers. Palm goes numb. Despair.

14.35 – Managed to sit upright. Right elbow starts hurting. More diazepam.

14.38 – Amazing spasm across trapezius that makes my back look like really impressive.

14.55 – Right glenohumeral pop, right scapula continues journey around front of body.

14.56 – Left glenohumeral pop, shoulder falls, probably all a result of the benzo taking effect.

15.01 – Something horrible is happening at the radial end of my left clavicle. Maybe the whole thing is rotating. Good thing the ceiling is fascinating.

15.28 – Forced upright by promised arrival of quotes for double glazing. Dislocate both shoulders, possibly a few ribs, feel sick and dizzy, fail to put weight through both feet. Using crutches.

15.47 – Fallen to pieces, returned to bed, feeling very sick and sore all over. Unsure of being able to get to the Party meeting tonight.

15.59 – Realise that my wrists have stopped hurting. Hooray!

16.10 – Wow, dizzy. Time to lie down. Spasms everywhere, guts don’t feel fantastic either.

16.46 – Drugs seems to be working. Very relaxed and passive and cuddly. Back is still sore, but mostly just want to curl up with someone nice, even more so than being in less pain.

18.55 – Back pain returns. Forced to move, and thus to eat. go to Labour meeting.

21.52 – Return from Labour meeting, in which I basically fell to bits but was not keeping track of exactly how.

21.53 – Get can of Relentless in one last attempt at waking up, go for a shower.

22.02 – Left hip subluxes whilst sitting still.

22.17 – Clavicles both pop, which I think was them returning to “normal”.

22.41 – Intense burning pain in back of neck, lie down and stay down.

22.59 – Lying on left shoulder, shoulder fully dislocates. Have to pause film and take ten minutes to repair it.

23.18 – Give up on being in bed, get in shower in attempt to be warm and less in pain.

23.20 – Assorted pops and clicks whilst in shower, mostly spine, ribs and shoulders. All seem to be going in the right direction.

23.46 – Pain in wrists start up again.

00.00 – Start of the next day, still awake.

Counting wooly blue things

“Oh, that’s just normal”.

It’s a phrase you’ll hear a lot, as a disabled person, and even more when you’re expressing concerns about a new symptom.

“My joints hurt all the time”

“I faint every time I stand up”

“I’m exhausted all the time”

“I can never get to sleep on time”

“I feel really sick when I eat”

And the doctor will reply “Oh, sweetie, that’s just normal, everyone gets that!”

It always takes me aback, because it’s such a blatant lie. A few months ago I was explaining to Dr Rh that, despite maintaining the best sleep hygiene that I could (Turning off all my screens an hour before bed, no caffeine more than two hours after waking up in the morning, blackout curtains on my window at night) I was still sleeping about five hours a night, even with diphenhyramine, and those five hours were usually during the day because I couldn’t force myself to sleep at “normal” hours. In tears, I begged him to give me some sort of sleeping pills, or to send me to a sleep specialist, since I wasn’t able to maintain a normal social life, never mind get to appointments or even think about getting a job. And he gave me a big, benevolent smile and said;

“Oh, sweetheart, I’m just the same.”

I blinked slowly.

This senior doctor, who ran a practice with at least 30 employees, who arrived at work at 9am every morning and left at 6pm every night without any notable absences, was trying to convince me that he also couldn’t be woken up by normal alarm clocks, had to sleep in the afternoon a few days a week, regularly hallucinated due to sleep deprivation, slept separately from his partner because he kept such inconsistent hours and didn’t want to risk violently attacking them during a night terror, and was unable to maintain any kind of social or professional life due to the crippling fatigue.

I was, understandably, not convinced. The message I took away was that he didn’t believe that someone could be ill and experiencing something outside of his personal experience, and that he thought that if he just told me to go away, I’d go away and stop having the problem.

And this is an extremely common experience – I’ve got friends who’ve eventually turned out to have severe sleep apnoea who’ve been told “Oh, everyone feels like that”. Friends with a laundry list of allergies or intolerances who’ve been told “Oh, everyone gets that”. Friends with crippling arthritis, and indeed with EDS, who’ve been told “Oh, no, everyone is in pain all the time.” Friends with CFS/ME who’ve been told that literally everyone is exhausted after reading a single page of text.

It’s such an easy lie to puncture. If everyone was, for example, unable to be woken by alarm clocks, there’d be no expectation for people to take an 8-4 job. Everyone would be on flexible hours, because everyone would know that waking up early two days in a row would lead to sleep deprivation and decreased productivity. If everyone really always felt sick after meals, it would be socially normal to eat nothing but small snacks and soups instead of full dinners. If everyone was genuinley in pain all the time, offices would have better break rooms, so that employees could lie down in the middle of the day, and everyone would take that opportunity, because sitting upright all morning would have been agony for everyone.

Conversely – If the person questioning their doctor really is just overly anxious about a normal phenomenon, anxious enough to go through the repeated humiliations of being patronised by their doctor, battling for an appointment, physically traipsing back and forth to the surgery, then maybe the doctor should think about offering some kind of counselling or mental health treatment, or at least just some kind of reassurance that there were ways of managing the condition, since everyone else is (evidently) coping with it so well.

It’s a pointless bit of verbal filler that does nothing but put up a barrier between the patient and the doctor, and make the patient ever less willing to trust that the doctor is competent at all- If they don’t understand that people come to them with medical problems, and that sometimes people take a long time to work out how to best describe their problem (or even that they can talk to a doctor about it) then they probably shouldn’t be working in medicine.

Threes

This has been a horrible, horrible week.

Over the past ten days I’ve nearly drowned (Blacked out in the water at the pool, fished out still-unconscious by lifeguard, couldn’t get right leg or lower spine to support me, had to get ferried home in the car by Dearest), nearly gone under an HGV (See the long post about the bike) and on Friday, after my dog had spent half an hour screaming every time he tried to move, requiring him to go to the vet for an emergency consultation, I was bluntly told that he probably had terminal bone cancer. From that point on I’d been so worried about him that I barely stopped crying all weekend, and haven’t wanted to talk to anyone about him, for fear of jinxing him.

Well, today (Tuesday) I found out that he didn’t- Despite all the howling and painful noises, he’s just got a soft tissue injury from climbing over the wall to my downhill neighbour’s house too many times. This is a massive weight off my mind, and has basically blasted the horror of the last week away into nothingness, since now I’m just so relieved that he’s all right. It’s no exaggeration to say he’s my best friend. He’s certainly the only person I’d ever get a matching tattoo with (Within a year of getting him, I had the racing number that’s stamped in his ear tattooed onto the back of my knee, at about the same height as he is).

Better than that, the vet today said that he was in remarkably good shape for his age, and not showing any of the signs of decrepitude that she’d have expected.

So here’s to things looking up.

Hopefully, the problems of last week will now be repaired in reverse order – My bike will be returned to me, preferably in one piece, and then by the end of the week I should be swimming again, even though I now kind of don’t want to because it’s just too embarrassing. I’ve also just made some enquiries about getting fabric for winter clothes (I think I deserve some fully-lined wool trousers) and have bought another parcel of norgies (A norwegian-style heavyweight shirt from the army-navy shop). And the fire is lit, so at least the living room is warm – it was down to six degrees in the bedroom last night, which is about the limit of my tolerance before I start wearing a nightshirt and piling on the wooly blankets and extra sheepskins.

So far, the judicious use of Best Friend’s old light therapy unit, along with the sun simulator generously bought for me by a forum friend, along with absolute comfort literature (The Harry Potter books, Discworld and Sergei Lukyanenko’s Night Watch series all do an amazing job of making Autumn not seem like a terrifying spiral of dizzying golden light that ends in an anxiety attack…) seem to be keeping the worst of the seasonal stuff at bay, so other than the horrible sense of anticipation and the clinical knowledge that I’m reacting poorly to stress as compared to in the middle of summer, I’m doing all right. Another friend is fighting the seasons by going for a very long walk in the hills, and I’m both glittering with envy and plotting how I can bolt off to find somewhere remote and green and rainy in the next few weeks.

Physically, I’ve been too wound-up to even understand that I have a body very much since Thursday. I imagine that tomorrow I’ll wake up and find that I’ve got a lot of dislocations that I’d not noticed, or at least that I’ve got not-all-that-mysterious sore muscles and knackered joints. But that’s tomorrow’s problem. Tonight, everything is fine.