The man in black

The week before last, I booked in a GP appointment to ask to have my tubes tied.

 

It felt like I was being cross-examined, and like whatever I said my answer would be wrong.

 

“Do you have a long-term partner?” (Yes) “And what does he think about you getting this done?” (It’s none of his business/he’s supportive) “But what if you were in a different relationship, with someone who wasn’t supportive?” (Why would I be in a relationship with someone who wanted something so different out of life/Are you saying that you want a future partner to be able to reproductively coerce me?)

 

“What do you understand by the term tubal ligation?” (I describe the procedure, the effect on hormone levels -ie, none – the possible side effects) “Oh, but don’t you understand that it’s permanent?” (That’s the point. Literally the whole point.)

 

“Why don’t you want a coil anymore?” (It’s not permanent.) “But you’re not having any side effects?” (IT’S NOT PERMANENT.) “Why do you think you’ve had difficulty with coil insertions?” (Because it had to be done under a general anaesthetic and then it fell out and then it slipped upwards and IT’S NOT PERMAMENT.)

 

Why don’t you want children?” (I never have. It would be dangerous. I don’t want to pass on my illness.) “Oh why do you think that you’re ill?” (Have you read my notes?) “Why do you think that it would be passed on to a child?” (Do you understand the meaning of genetic?)

 

She wrote down all of my answers then said “Well, since you’re so young, I’m going to reccommend a very long course of counselling first, before you get the referral.”

 

I’m so young. SO YOUNG. I’m thirty. My grandmother was through menopause by 35. I’ve miscarried and know that I can’t carry to term due to an intersex condition, atop the EDS making it so dangerous. I’ve lived all over the world, taken a dozen career paths, worked with children, and just know they aren’t for me, but it’s assumed that a few hours of sitting in front of a happy maternal girl in a quirky dress with a sympathetic expression who says “But… Babies? Babies?! BABIES!!!!” will make me throw my life plans and physical reality up in the air and risk my life, my sanity and my ability to support myself and want to spawn. Or that a hypothetical future-partner deciding that he wants to whelp onto me is more important than my lifelong wishes.

 

Fucking amazing.

 

Anyway, first session of counselling is at 9am on the 10th of May. 9am. The poor counsellor is going to come out of that session not only not wanting children, but being pro-extinction-of-the-human-race.

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Operation Infinite Dugong

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

 

And it was all really good.

 

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

 

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

 

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

New things which he pointed out;

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

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

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

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

 

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

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

 

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

 

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

Migraine Week

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

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

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

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

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

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

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

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

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

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

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

Eventually, they left. I passed out.

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

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

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

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

A damned slab-sided Dutch-built bastard.

Well, that went about as well as expected.

Apparently, all I need to do is be more disciplined about getting up early in the mornings, so that I’ll be tired by an appropriate time at night! Gee golly, I’d not thought of that in the eighteen years that my sleep pattern has been a problem. I tried to explain that it wasn’t a matter of “No, just another five minutes in bed…” it was “Someone can literally be shaking me, slapping me, trying to wake me up with alarms and lights, and I will fall asleep again, standing up, or vomit” but apparently that’s just a matter of willpower.

My exact words were “That’s like telling a depressed person to just smile more.” and Dr Ly looked very sad at that, then came back to it a while later in the conversation to apologise and clarify that she “wasn’t trying to be flippant” so maybe, just maybe, she’s understanding the problem.

And then there was the Stanmore stuff.

UCLH claim that they sent the referral off on-time in July 2014. Stanmore claim never to have recieved it.

My local GP doesn’t have the full copy of the letter (Which I’ll blame on RL, since they’ve got page 1 and page 3, but not page 2, which was on the back of page 1, suggesting that a receptionist failed to check that they’d scanned it all in) but once they do, since the missing page is the one which says “Refer the patient to Stanmore” they’ll be able to backdate my referral to 2014, and hopefully get me bumped up the order.

Good thing I keep my own records, isn’t it?

For the record, this is the “lost” letter. It’s a pretty fucking important one.

letter1cens letter2cens

Look at that list on the second page. Let’s see whose responsibilities they were, and if they’ve been upheld;

  1. Better pacing. More swimming. My responsibility. Carried out.
  2. Work on core strength. My responsibility. Carried out.
  3. Drink more water, eat more salt. My responsibility. Carried out.
  4. Regular physio every 4-6 months. Local Hospital Trust’s responsibility. Not carried out.
  5. CBT for pain. Local Hospital Trust’s responsibility. Carried out.
  6. Stanmore referral. UCLH’s responsibility. Not carried out.

Effectively – The only person to not lose their wicket here was me.

Fluffy flotsam

Actually, today came good.

  1. Did my taxes first thing this morning, so am now up-to-date on the 2014-2015 financial year.
  2. Picked up my prescription without any hassle.
  3. Got, if not a good result at the GP, at least a non-horrible result, and Dr L2 is really nice.
  4. Best of all, got a post-illness kilometre PB – 14.07 freestyle. Doing 39 racing turns in a row will make you dizzy though.

Hot Milky Hygiene

Dr L2 was really nice, believed me, trusted that my graphs were accurate… And gave me depressingly unhelpful advice. She also said there was no sleep clinic nearby who could take me.

The advice I’ve got – Start my “going to bed” regime earlier, about 10pm rather than near to midnight, and don’t read after that point. Make my bedroom be purely for sleeping in, not for anything else. She seemed to think that my exercise regime was doing me good, so to stick to that. And to stop taking nytol, which I would rather not be taking anyway. She also advised that I get up every morning at about 9am, as I have been doing anyway.

Let me point out what this means in reality.

This means coming home from my swim, and immediately turning off the lights and lying in the dark. With no chemical assistance to get to sleep. I’d shown her the graph which showed that, sans-nytol, I fall asleep about an hour or an hour or a half later every night, leading to occassionally going to bed in the early hours of the morning. This could mean lying still, in the dark, wide awake, until sunrise.

I am pretty sure that this will nuke my mental health, with nothing to do overnight but either ramble through my favourite daydreams (fun) or descend into one of my more usual depression-anxiety-horror spirals.

Well, it’s a month. I can do anything for a month. And this will make an even more interesting graph. Next appointment is on the 11th, also with Dr L2.

For the curious, here’s the whole first month’s graph:

firstmonth

Oh, and I got a Stanmore update – Dr R did nothing in February, other than to mark down that there’d been a fuckup, and Dr L2 reckoned that they wouldn’t be able to refer me out-of-area until they’d been to the funding committee, and made a case for why I personally deserved funding.

So, yeah, all of the time between July 2014 and now has been wasted. She’s promised to get someone to phone me back, soon, about progress with the funding committee.

I have been in pain, howling, life-wrecking, sanity-shredding pain, for the fourteen months since seeing the hypermobility clinic. In those fourteen months, I’ve become almost entirely housebound, and have only very recently started going out again for anything other than completely essential errands. Those fourteen months, in which I’d been clinging to hope by racing to the door every morning to see if my Stanmore admission had been confirmed, have just been wasted.

Fuck everything with a sharp stick.

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.