A tale of two ovaries

So, on the 10th of May I went up to the local health centre to talk to the counsellor about being sterilised. And, honestly, she was fantastic. She had no qualms at all about whether or not I needed the procedure, she understood that wanting the weight of fertility off my mind was an important thing, so we talked about physical methods – I obviously wanted it done transvaginally, because incisions would risk adhesions, and she agreed that was a great idea. The local Trust don’t usually work transvaginally, so she referred me on to my usual surgeon, Mr GB, and suggested that a ligation followed by putting the Mirena coil back in place (So that I was sterile AND had no periods) would be absolutely ideal for me.

She waved me off with a smile and a promise that all it would take from now was a bit of form-filling and a quick consult with the lovely Mr GB.

 

So, on the 11th of June when I had to go up to StJ to see the surgeon, I wasn’t worried. I rode in, happy to be out on the bike on its new tyres, and was called up into the office pretty promptly. To see… Not Mr GB. An assistant. Fair enough, I thought. We had a nice chat to start off with – She’s a zebra too, and I was amazed that she’s the second zebra gynae that I’ve met *at that hospital*, and a biker, so we chatted about the bike, and then;

 

“Well, the bad news is, there’s no way that we’re going to give you a ligation. Our trust just do not do them on anyone who’s not already had children.”

 

I got angry, swallowed it back down into a hot ball of sick sweat in my chest, and felt myself flush a terrible colour.

 

“Have you considered vasectomy?”

 

I fought back. I’m not my partners’ property, so I exaggerated a little; “It doesn’t seem fair to give half of the city a vasectomy just to avoid letting me have the snip.”

 

She tried another tack;

 

“I know it’s boring to have to come in every five years and have your coil changed”

“Traumatic.” I corrected her.

“Traumatic?”

“At my first coil change, I told the nurse to stop and take the speculum away. Her response was ‘no’, and she continued to try to grab my cervix in forceps whilst holding my legs apart. I kicked her, broke the speculum, and curled up crying in a corner. The reason I’d needed her to stop was because I was beginning to have flashbacks to being raped with a handheld object by an ex-girlfriend. Since then, I’ve needed to have them done under a general anaesthetic.”

“Well, next time, come here and we’ll do it under a local.”

“Did you not hear me? Plus, you should know this, I have EDS, you have EDS, local anaesthetics do nothing. Christ.”

“They might. Try. You can’t keep having them done under a general”

“But that’s the only birth control that works for me. And the only way to install it. This is why I need to be sterilised.”

“I know, but we just… Can’t. What if you want babies later? It can’t be undone!!!”

 

I eventually got her whittled down to doing an out-of-area referral, to send me a few hundred miles away to be done as a day surgery, but first it would have to pass some other long panel of people who clearly Know What’s Best For Me Better Than I Do. Someone in that line will almost definitely decide that what I really need is the coercive threat of being a broodmare to keep me in line. If just one set of administrators decides that it’s not worth their time or money to put me under a general to get my coil changed, then that’s just it. My sex life ends.

 

Somehow, I managed to get out of the appointment without raising my voice once. But, really, this is the kind of nightmare that feels like it should be left in the past.

 

 

 

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.

Bread basket

Today was supposed to be a pelvic, transvaginal and urethral ultrasound. I was, understandably, bricking it.

Two minutes before needing to leave the house, I phoned Best Friend in a panic, feeling like I weighed half a tonne and was welded to the bed. By some miracle, he got me convinced to put on real trousers, pack a bag full of sensible medications and literature, go downstairs, and let Dearest shovel me into the car.

I arived at StJ, with Dearest, and got along to the near-empty ultrasound suite. They have refurbished huge chunks of the hospital, and this one was one of the departments they’d not quite reached yet, so it was nice seeing confirmation that the contrast between the “old” bits and the “new” bits really was as big as I thought. Not just newly-colour-coded walls, but also better signage, brighter, more diffuse and warmer lighting, more comfortable and flexible seating and more of what I’d call “passive entertainment” – Paintings on the walls, well-stocked fish tanks, facts about local history and wildlife. This particular waiting room had a couple of plastic chairs, a very sturdy vinyl sofa, and a notice saying “There were many educational posters in this ward which patients found distressing and frightening. The posters have now been moved to a staff-only area.”

Which was a shame, since I like the terrifying educational posters of all the worst things that can happen to a body. I especially like the skin ones, showing the full-thickness diagrams of different kinds of spots, insect bites and rashes, I don’t know why.

Anyway, we weren’t waiting for long, and I went into the usual semi-dark ultrasound room, and quickly necked a couple of diazepam to keep myself from going into messy spasms. I could see the transvaginal probe on the bench, and it didn’t look reassuring (Though in fairness to itself, it did look nicer than a speculum).

The technician got me to lie down on the bench, unzip my fly and roll up my shirt .

She asked if we were looking for a hormonal or a copper coil; The copper coil shows up much more brightly, since it’s got metal parts, so is easier to find. Sadly, we were looking for a hormonal coil, so this could have been a slightly longer process.

First shot was transabdominal, so she quickly lubed up my belly from navel to pubes (very courteously tucking a bit of blue paper into my boxers so as not to completely soak them in ultrasound goo) and started ultrasounding. One or two passes, very firmly, over the bottom third of my abdomen – Asking if I was all right, and keeping me well informed of what she was doing all the way (Including the amazing statement of “Oh, there’s a loop of bowel in the way, I’m just going to nudge it to one side for a minute…”), then pressing down quite hard onto the top of my pubic bone, to see behind it. Each time the machine took a “photo” I felt a fairly strong vibration, like from an amplifier, but that was all.

“Aha!” she said, turning the screen so that I could see it (She’d earlier had to point out to me that if I tensed up my abdominals to lean up and see the screen, I was pushing the wand away from what it needed to scan and defeating the object) “There’s your coil – And right where it’s meant to be as well.” She pointed out a pair of parallel lines on the screen, surprisingly fuzzier than I’d expected, and I was immediately, deliriously happy.

“I don’t need to do a transvaginal, it’s all where it’s supposed to be. I’ll send a letter to your doctor – It must have just been a bacterial infection from having it installed in the first place.”

I have never been so happy to waste a benzo. I dried off, thanked her profusely, and went to the toilets to change into some less-jellied underpants. All in all, the whole effort took less than fifteen minutes, wasn’t painful, was technically interesting to watch, the practitioner was pleasant and professional, and the news was good.

Why can’t all procedures be like that?

Next week is a doctor-heavy week (Medication review on the 3rd, then appointment with Dr L on the 5th) but before that I have my motorcyle CBT on Saturday, then the New Zealand v England test in Headingley on Sunday, and hopefully a night at Best Friend’s house some time around then too. So all is coming up roses at the moment.

Oh, and on the 13th I’m going up to the homelands to look at bikes with an old friend. Now, let me explain this friend; We met when I was working underage in a nightclub when I was 17 (He was 21, but I still IDed him, ironically), and us and our collection of dubious metallers and goths drank heavily every week together from then until I went to university. Upon my going to university, we met up every couple of months (with the key date being New Year, wherein we would all pile back to his best friend’s ground-floor flat overlooking the quayside and sleep in a pile in the living room, leaving one-by-one through the front window after sunrise then walking back across the river to go home) and then once a year, and then eventually (when I moved to japan) not at all. Our last communique had been not long after the earthquake – He’d been intending to visit me in Tokyo, but Japan running a skeleton service made it less immediately practical. So that was the last we heard of each other.

A couple of weeks ago, I got a text out of the blue asking if I wanted a night out in the homeland. It had been sent on Saturday night, and I picked it up on Sunday morning, so I just laughed it off and replied with “Yeah, if I’d had more notice.” A couple of texts passed back and forth until he asked “Hang on – Which [Old Nickname] is this?” My response was “The [Old Nick] who lives in Leeds and you’ve not seen in half a dozen years.” Seconds after the I put down the phone, it rang, and i was greeted with a delighted “HOLY SHIT I thought I’d lost your number years ago – How’ve you been!”

We caught up, reminisced, and lo, we’re going for a night out on the lash in a few weeks. Despite all of our old haunts being long-gone, there’s the rumour of a new metal night starting up and one of our old pubs reopening. And then on Sunday, probably exhausted and carrying him through a hangover, we’re going bike shopping.

Predictably, probably, I’ve glossed over the EDS. I suspect he will assume that a life of hard work, hard drinking, hard knocks and hard luck has just caught up with me. But that’s a bridge to cross when I get to it.

Black Planet

It’s been a nice, quiet, do-nowt sort of week, and yet it’s also not bee a waste of a week.

I failed to get to the cricket on Sunday (Still too ill) but spent Saturday to Thursday recharging at Best Friend’s house, wherein we did bugger all other than cook elaborately delicious meals (Any day where you have a chocolate, brandy and brazil nut suet pudding for breakfast is going to be a good day), listen to Yorkshire utterly destroying Hampshire on the last two days of the county cricket, watch The Battle Of Britain, and generally chatter nonsense. I don’t think we’d physically seen each other for about a month.

Next week, or over the next couple of weeks, I’m back to busy and depressing; 19th is a meeting of the local Labour party that I should go to, but will probably be basically mourning, 20th is seeing my GP about a referral, 21st is shoulder physio at StJ, where hope against hope I might get to see Carmilla again, then the 28th is a set of ultrasounds – Pelvic, abdominal and transvaginal. I am not looking forward to them, and in fact I am positively shitting myself over them.

So, to counteract this, I have booked my motorcycle CBT for the 30th, starting at 7.45 in the morning. I don’t particularly want a big, fast, powerful bike, I just want something to get me from A to B without using up immense amounts of fuel. And possibly to get me up to Whitby. A little mini-cruiser, or a commuter bike, would suit me down to the ground – Maybe even a Super Cub, if I’m feeling completely whimsical. But more likely a Suzuki GN or a Honda CG or similar, or one of the many similar-looking, -sounding and -handling Japanese 125s.

To this end, I’m going back to work – £20 so far this week (A grand total of about half an hour of work) and planning to increase the amount as much as possible without starting to resent working again. And I’m going to keep swimming, even though it’s exhausting, because that’ll keep me fit enough to be safe on a bike.

I refuse to let EDS be the be-all and end-all of me.

Thunderfuck

I am a very sickly Zebra today.

The day before the General Election was a long one.

Physio first. Very kind, very honest, community physio – Asked me all the right questions, was incredibly sympathetic, spotted my popped hip from the far side of the room and through a tracksuit, knew what EDS was and had treated EDS patients before when he worked for rheumatic physio… And admitted straight away that I was too complicated a case, and he couldn’t help me under the remit of the community physio. He also volunteered to chew the ear off my last physio at CA, the same as Dr D did, so that man is going to have the most in-demand scalp in the county. Sixteen-plus years of ongoing pain, with the hypermobility complications, needed more time and effort and specialist knowledge than he could swot up on, so back to the hospital for me. He was what I’d call a “proper physio” – A grey-haired ex-rugby forward, who enthused about keeping fit and said that I was doing all the right things by aiming for ten kilometres in the pool per week,  assured me that missing that goal wasn’t the end of the world, and that even trying was better than most people would do, and said that he wished me the best of luck, regretted that we couldn’t work together, and that if anyone was ever going to recover completely, it’d be someone like me.

I’m not sure if that’s just a platitude that everyone says to every patient, but a hell of a lot of knowledgeable people have said it to me, so it makes me feel a lot happier and more encouraged than otherwise.

I actually felt encouraged enough that I went for a swim. I’m continuing my strategy of taking neither crutches nor morphine to the pool, so that I can’t overwork myself in the opiate hubris zone and end up collapsing on the way home. 500m in about 15 minutes, with the limiting factor not being myself, but the fact that the pool was bedlam – Seven to a lane, one of the ropes completely slack, Medium lane full of slow people, Fast lane a combination of pissbreathers (Those people who swim in such close formation that they must be right in eachother’s stream if someone suddenly feels the urge), people doing deadly serious drills (whom I didn’t want to interrupt), one incredibly elderly water-polo player (who was covered in what looked like WW2-era forces tattoos with whom I had a lovely chat about both water polo and the history of the local pool) and me (he of the incredibly erratic split time, even more erratic accel/decel out of turns, and tendency to stop in the middle of the lane every few dozen lengths to reassemble).

Deciding that I was better off taking the small prize rather than knackering myself in a suboptimal pool, I called the 500 a win, and went home.

Then the GP, which went really well – Dr L, someone I’d not met before. Nice, genuinely approachable, said to give her a week to do her reading, then come back and get a referral. Next appointment on the 20th.

Upon returning home from the GP, I found that Dog had eaten a full bar of Bournville. I’d been gone for literally twenty minutes, at most. Panic stations immediately manned, I dragged him off to the vet to get an injection of abomorphine (a REALLY potent emetic), then sat stroking his back and making generally reassuring noises as he vociferously chundered all over the vets’ car park. Whole bar accounted for – Seriously, it looked and smelled like a patissier with a grudge had iced the whole yard in cheap chocolate fondant – We went back home and sat in the kitchen, him looking terribly sorry for himself and me terrified that he was going to have some theobromide still in his system and have a heart attack. He’s a very old man, in greyhound years (He’ll be ten on the 4th of July) so this wasn’t a stupid fear.

Did not sleep well that night – Every whuffle and twitch from Dog woke me up in a panic.

Next day was the General Election – Tasks do do; Get to the vet to sign my insurance paperwork (To keep that bar of Bournville from being the most expensive that I’d ever purchased), and go and do some democracy. The local polling station is at the end of the road, so I thought I’d do one round-trip; Up to the vet, then back down to the church hall, then home. After the previous day, and the night earlier in the week where I’d been awake for something like 40-odd hours having a bit of a manic episode, I was anxious as fuck for a number of reasons. So, I took along Dog in his semi-official capacity as my assistance beast. Not a joke – It’s all there in my psych notes that due to fairly nasty PTSD I sometimes need to have Dog with me in order to function like a normal human being, and most people are fine with this (He’s lazy unto the point of appearing well-behaved, quiet, doesn’t shed too much, and doesn’t leave my side. The lead is basically for show – I’ve led him through a field of lambs with the only tether being a piece of wool from my wrist to his collar, and it didn’t even go taut once.)

I knew in advance that anyone is legally allowed to take their dog into a polling station (There’s no chance of my dog being a paid shill, swaying my hand to vote for his candidate instead of mine) so I walked in through the newly-opened disabled entrance with him at heel. Only to have his lead taken out of my hands (No asking, just taken) with the explanation of “The other attendant is scared of dogs”. I started to panic, and as I do when on the verge of having a massive PTSD meltdown I saw the path diverge – One path said “Deck the shitheel that’s taken your dog”, the other said “Become compliant and get your dog back”. Thankfully, since I have no choice in which road I go down, my proverbial BIOS sent me to the DOS of total basic obedience, rather than the obscure Linux distro of uncontrollable violence. I’m pretty sure that at this point I went to the bench, took my papers, marked them both appropriately, then got Dog back, since the next thing I remember particularly clearly is sitting outside the polling station with my face in Dog’s shoulder, shaking like the proverbial shitting greyhound.

I made a mental note to go back and correct the attendant (You don’t just *take* a man’s dog, you ask if you *may* take it. Not all service dogs wear the big yellow harnesses. Not everyone’s dog is comfortable being handled by strangers, so you could well get bitten. I can only assume that if a blind person came in avec-chien, then the dog-hating attendant would have to leave the bench. Assume that as the priority one solution next time) but didn’t have the strength to do it. Instead, I just went home and tried not to think about the election much. I failed – Slept from about 2am to 4am, woke up to a world of nightmare.

So, yesterday, the day after a Tory government of only borderline legitimacy took power (That’s a tiny minority, and that’s even with the constituency boundaries largely favouring them), I woke up feeling like shit.

At first, I took the pain in my abdomen to be just the continued saga of this fucking coil. By about 13.00, I was concerned enough that I told Dearest and Best Friend that I might be going to hospital. And then the gastric distress started, and I shelved that idea. Somewhat like a bloke with lymphatic filariasis localised to his cock, first I was pleased, then a bit concerned, then incredibly concerned, then I wished I would just die. For context – First I thought that I was just reasonably disimpacting after what had been a horrible week, then I thought that I had a spot of diarrhoea, probably from the severely dodgy out-of-date popcorn and absinthe I’d had for tea the day before, then I thought that I might be having an adverse reaction to the doxycyclin… By 3am, when I was literally passing nothing but bile, stomach acid and water, every ten minutes, uncontrollably, with so little warning that I couldn’t leave the bathroom, I didn’t care what it was, I just wished I was dead. It hurt (Hydrochloric acid failing to neutralise as it passes through the digestive tract will do that), I was getting cramps from the rapidly-changing pressure and bloodflow in my already-tortured abdomen, I was trying to vomit but nothing was coming up, I was utterly knackered and dehydrated.

Oh, and did I mention that this is on top of terrifying chest pain and heart palpitations after trying to ward off a weather-induced migraine with an ill-advised Sumatriptan at 17.00? I was so ill with that (unable to move, curled up in bed, sweating, shaking, struggling to breathe, vision going blue and grey from lack of air) that Dearest ended up cancelling his night out to look after me. I’ve had bad reactions to Suma/Imigran before, but never this bad. Suffice to say, since I genuinely thought I was going to die, I am not taking it again.

So, yes, by 3am I wasn’t sure if it was going to be the heart attack or the dehydration that would kill me first. Drowning myself in the bath was a close third.

I must have got to sleep with the aid of a lot of morphine (Good for both the pain and for stopping the bowel from moving) and diazepam (good for slowing the heart rate and relaxing the intercostals, letting me do a few breathing exercises) because according to Dearest I was singing the Russian national anthem very loudly at about 4am, but he thought it would be unethical to wake me up since it’d taken so much effort for me to get to sleep in the first place.

I woke up at about five, had a brief conversation with Dearest (Reassuring him that I was all right, and not actually about to drive a military parade of rockets on floats down Briggate), and have returned to my nest on the chaise longue.

Today has infinite chances of being better than yesterday. In a bit, I’m going to see if I can drink anything without feeling as if my heart is being stepped on, have another shower, ring NHS Direct to see if I should be worried (And to ask whether I can just stop taking the doxycyclin, since another week of this would literally kill me since I can’t eat or drink), and bizarrely hope for a migraine (The surefire sign that I’ve metabolised the Imigran out of my system and that the chest pains will stop).

So, yeah, my awesome Saturday plans are “Have a migraine” and “Try to drink some ginger beer.”

Then, Sunday is the cricket, Earnshaw willing.

First and Last and Always

I am under a lot of fucking stress right now.

Got the results from my cultures back today – No external infection.

May still have an internal infection, so still have to keep taking the antibiotics (Doxycyclin and Metronidazole) that’re making me violently ill.

Most likely candidate is that my coil has gone up into my abdomen.

This means surgery.

This means two rounds of surgery – One to remove the coil, then a tonne of unneccessary counselling, then another one to tie my tubes.

(Yes, it has to be a tube tie. Coil is a mechanical failure, DEPO/Implanon/Nexplanon cause bleeding, migraines so can’t take the combined pill, erratic sleep schedule so can’t take the mini pill.)

I’ve never wanted children.

I had a horrible childhood, mostly at the hands of my peers, and I have no desire to subject another human being to that.

Mental illness runs through my family like a seam of coal, not just “a spot of depression”, I mean violence, delusions, suicide attempts. I have no desire to subject another human being to the capricious whims of having me as a father.

Miscarriages have hit us every generation for the past five; I would have been a miscarriage without the march of technology, 1lb8oz of spite clinging to life in a perspex box for three months, now an adult that still finds more comfort in the clatter of machines than in a human heartbeat. I have no desire to subject another human being to spending a childhood as a lab rat, or to make my partner go through the grief of losing a child.

Ehlers-Danlos has crippled me beyond the point of use before I’m thirty. I have no desire to subject another human to the feeling of staring out at a lifetime of hospital appointments and months lost to pain.

I have been telling doctors, since I was sixteen years old and getting my first Depo-Provera, that I want to be sterilised. Every time I’ve been told “Oh, you’ll meet someone that you want to have children for one day!” (because obviously, having children is something I should do to please someone else), “What if you meet the right man and he wants children?” (because there’s no way that I would reject a life-partner based on us having incompatible goals), “What about giving your parents grandchildren?” (because I have more right to choices in my own reproductive life than my parents), and their trump; “What if you change your mind?”

Well, I knew when I was four and first meeting other children – They wanted to play with dolls and talked about having families, I was horrified by the whole idea. I knew as a teenager, when my classmates were naming their hypothetical children and theorising who they’d have them with. I knew when I was at university, and I planned to spend my life travelling. I knew when Dearest moved in with me, and he deliberately chose to be with me over starting a family, at least for now. I knew when I was diagnosed with an incurable genetic disorder. I knew when I saw my cousins proudly hold up their babies for me to approve of, and I saw something that I appreciated as someone else’s path, but not mine.

Why is the medical community obsessed with making me suffer twenty more years of uncertainty, and pain from incompatible methods, and miscarriages when they fail? Why not give me the snip and let me live out my days in peace?

We make bigger choices at younger ages.

Herbs

So, yesterday turned into a complete clusterfuck.

After having woken up at 04.30, and dismissed the pain in my abdomen as “period cramps”, things kind of deteriorated.

By 3.30, I was in so much pain that I could barely keep my composure on the phone as I rang the GP to ask for an emergency appointment. I was actually in so much pain that I took a taxi to travel the less-than-a-hundred-yards to the surgery. I was piled into a transport chair at the surgery, and seen immediately by a Dr W, whom I’d never met before, who quickly palpated my stomach, rang an emergency ambulance (“here in ten minutes”) and told them to take me to gynaecology at StJ.

The ambulance arrived, I was shovelled into it, and handed the nozzle of entonox. The pain lessened, and I started being able to explain the problem, doing the standard in-ambulance checks (Blood pressure, heart rate, preexisting conditions), and phoning Best Friend and Dearest to tell them where I’d gone. Then the canister ran out, and I was back in acute abdomen hell. I fully expected the paramedic (A nice Australian who got a good balance between being genuinely worried for me, professionalism, and keeping me calm) to say that an empty canister meant that I’d had enough, but instead he just got up, installed a new can mid-transit, and handed the mask back to me with a cheeerful “Fire in the hole!”

At this point, I inhaled enough that I bascially only regained consciousness upon arriving in Ward 26, who immediately sent me along to Medical Assessment, where I was put in a chair in a waiting room with several other patients and the snooker on the TV. Every now and then the pain broke through to “Uncontrollable” levels, and I curled up and howled for a bit. An incredibly sympathetic nurse (Nurse H) came and took my blood pressure, then eventually took me off to a private consultation room to get my bloods (Checking for systemic infection) and generally confirm what the problem was. She had literally no idea what hypermobility was (“Oh, I just thought it was shorthand for having mobility problems”) so I proceeded to fascinate and horrify her by dropping a shoulder out of the socket and letting her put it back, and we generally had a really nice conversation about basically everything – She’d trained where I used to be a technician, we used to frequent the same bars, she asked the traditional leading question “So, do you live with your girlfriend?”, and was generally very, very friendly. After about three hours in total in Assessment, where I’d had a single dose of morphine for pain relief and nothing more, we said our fond farewells and I was transferred off to Gynaecology, where I should have apparently been in the first place.

I was put in another transport chair, and portered over to Gynaecology, which had moved, so which took a few more detours than I’d expected. At this point, I was texting Dearest as to where I’d gone, and had to update him about five times.

Gynae was a very modern, labyrinthine series of private treatment rooms, one of which I was immediately installed in, my stats taken again by another nurse, and I was left alone. After having read the contents of the instrument drawers a dozen times, and thus gone thoroughly out of my mind with terror and taken a single diazepam to clear my head and loose the  tension from my whole body (Now frankly tortured by the four hours in uncomfortable chairs), lay down on the examination bench, and continued reading (The flight to the Walpurgisnacht ball, Margarita’s remarkably affectionate scene with Woland and his retinue as they prepare for the guests).

(Relatedly, at some point I have to do a cripple’s-eye-view analysis of Woland. His accepting of guests and still being a commanding presence whilst sitting in a mess of old bedlinen, wearing only a badly-darned nightshirt and slippers, and having his rheumatism-slash-witch-related-injury attended to by Hella, is increasingly an inspiration on how to conduct business. It was actually only in that scene where I noticed that he’s always portrayed as sedentary, as leaving everything early, and as not only walking with a stick but actually being lame)

It took a further five hours to see a doctor. I was periodically checked up on by a nurse, who very much fell into the category of “Absolute solidarity with anyone else stuck in this godforsaken buildding so late at night” and was periodically told “You’re next on the list, won’t be long now.” She gave me a dose of morphine, which was no help (I later found out that I’d been prescribed 2.5 mililitres of Oramorphy, or 5mg of actual morphine. Considering that my starting dose is 14, this explains why for much of the rest of the night I alternated between screaming and sobbing, pacing like a caged polar bear, trying to distract myself with my book, and creating gynaecology-specific lyrics to Chris Cafferey’s “Pisses Me Off”.)

At eleven, I went for a leg-stretch around the corridors and saw a sobbing, frightened-looking woman in a hospital bed being wheeled through the department. A few minutes later I was told that the doctor had gone into theatre, and would be a little bit longer. I was mostly just glad that I wasn’t the woman in the bed.

By 12.30, when I was lurking near the break room in the hopes of scavenging a cup of tea, more morphine, or a biscuit (Hadn’t eaten for over twenty-four hours, since having about half a Chinese takeaway on Thursday evening) I saw the same woman being wheeled back, unconscious.

At one, I met the doctor – Impossibly young, impossibly cheerful for someone who had just done abdominal surgery in the middle of the night, and I immediately wished we were friends. She checked over my abdomen again, working out that the pain was all basically in a quadrant between my navel, the top of my left iliac fossa, and the centre-line of my pubic bone. She, again, asked if I was generally fit and well, and I told her about the hypermobility syndrome, to which, instead of getting a blank look, she said “Oh, join the club”, and soon after launched into an anecdote about a shoulder sublux whilst performing a caesarian section, which she cracked back into place without even needing to rescrub, or the patient suffering at all. I was moved to describe this as “badass”, which she agreed with wholeheartedly, and immediately started taking the piss out of rugby players with their “Oh, I dislocated a shoulder on-pitch and my coach just punched it back in and sent me back onto the field” stories. So, of course, I had to tell her about the time I’d been manually examining a cow’s cervix and ended up getting my forearm back, but not my hand.

It was decided that she’d have a look at my cervix, to see if the coil was still in place, take swabs for pelvic inflammatory disease, gonhorrea and chlamydia, treat for them all anyway, and then see what happened next. As such, I stripped below the waist, was handed a speculum (Both her and the attending nurse were surprised, impressed, and thoroughly supportive of me having control of what was going on, since as she put it “It wasn’t in anyone’s best interests to traumatise me so much that I never came back”) and played the feindishly-difficult joystick game of “Where the fuck is Percy’s cervix?”

Cervix eventually found, I got some good news – Nope, there was no plastic sticking through it, so the coil hadn’t slipped down. The bad news was that there were no visible threads anyway, so it could have gone up, and be basically anywhere in my abdomen.

…So, at some point within the next two to six weeks I’ll be having an ultrasound to find out where my coil has gone. If it’s not the thing hiding in my left iliac fossa and causing all the pain, I’ll be amazed.

At 2am, with a letter for my GP, a couple of boxes of antibiotics, and a promise of an ultrasound coming up, I went home. I’d been in the hospital for ten hours, and most of that was the nine-hour wait to see a doctor. That’s pretty amazing, considering that the GP who originally phoned me in said that I needed to be seen immediately.

EDS Awareness Month, and appropriately enough, MAYDAY MAYDAY.

Today I awoke at half past four, and watched the sunrise. All quite pleasant, actually – Dearest sleeping peacefully beside me, Dog curled up at our feet, half-awake and happy to have his ear scratched with my toes, sunlight streaming in from a deep blue sky and shining off the golden Yorkshire stone.

But, alas, I was awake in pain. My right shoulder, again, felt as if someone had heated up a 35mm ball bearing in a furnace until it was white-hot and shoved it under my scapula with considerable force. Lying flat on my back hurt (The ball bearing pressed into my ribs and levered the shoulder backwards), lying on my side hurt (The ball bearing rolled towards my spine, and the shoulder fell backwards over it), sitting up was marginally better (The ball-bearing seemed to slot into a gap in my scapula and the rest of the shoulder hung straight-ish) so that was the axis I chose to be in.

At 6am, the baths opened for a lane session, so I debated sneaking out for an early-morning swim and maybe a ramble around the graveyard again. A quick test of the shoulder showed that I couldn’t get my arm about my head without producing a painful grinding feeling and a lot of unsettling clicking, meaning that any attempt at swimming would result in pointless little circles, or in doing more damage to the muscles.

This was also about the time where I realised that my entire chest had gone tight, from the tension in the shoulder, and I was breathing so shallowly that I’d got a stitch. This was not helping matters.

Anyway, this is the part that makes this post specifically about EDS awareness (Becauase it’s EDS awreness month, aka Zebramas or Zebrannukah) and is also the par that makes it viscerally horrible.

At about this point, I got a horrific stabbing pain in my left hand side. Not stigmata, not a perforated ulcer, not my bowel finally rupturing, but, as it turned out, a menstrual cramp.

Even menstruation is not simple for zebras. As you may or may not know, menstruation is aided along by smooth muscle contractions in the uterus, which can temporarily reduce the blood supply to the surrounding tissues, causing the pain and the famous cramps. The famous cramps famously radiate into the back and the thighs, if you’re particularly unlucky.

Now, consider that as a zebra, your muscles are under constant tension, as they hold your limbs and torso into positions that would be “relaxing” for other people. Getting a menstrual cramp is thus like attempting a deadlift whilst someone kicks you in the stomach – The muscles are already stressed, are probably carrying minor injuries (The sort that the average zeb learns to ignore from about the age of four) and are suddenly having their blood supply cut. This is screamingly painful.

As such, as well as having to deal with the joy of getting up every few hours to replace a sanitary towel, forced transvestitism, and knowing that I can’t swim for a few days, every muscle between the bottom of my ribcage and the top of my knees is either burning, or completely numb (I cannot feel my buttocks and this is incredibly distressing).

Also, being another complication of EDS which can be made even worse by menstruation, my digestive tract has stopped. I don’t mean I’m constipated, I don’t mean I’m not hungry, I mean that peristalsis is not happening. Food is going in, is sitting in my stomach, then is occassionally coming straight back up.

We shall see. GP appointment on the 6th, as well as physio, so there might be some hope on the horizon, at least for my shoulder.

Tiny glasses

Friday was outpatient surgery, at WDH, a new hospital that I’d not encountered before, but that I’d heard absolute horror stories about from other people – That it was filthy, that it was inaccessible, that it was basically a nightmare, so I wasn’t looking forward to it.

After a lovely drive (Sunshine, spring flowers, lambs, VOTE LABOUR signs everywhere) me and Dearest arrived at WDH to find that, other than being a bit of a maze, it was really rather lovely.

Moved into a small ward, and was the only person given a bed rather than a chair (They had documentation in advance saying that I had prior health conditions). I was assigned a nurse, who did all of my paperwork for me, and I was bumped forwards in the rotation to get me home as quickly as possible, since I was in obvious pain already (Having not taken my morphine in the morning, due to forgetting it at 7am with my cocoa, then not being able to have anything to wash it down with later, and not being sure if I could take it anyway).

We arrived at 12.00, and by 12.30 the registrar had been around to get me to sign a consent form, by 13.00 I had spoken to the anaesthetist, who had told me to take my morphine, and had reassured me that she’d put some more in my general anaesthetic to make sure that I was still comfortable when I came around, and then it was only a short wait, until 13.45, before I was asked by a second nurse to go down to the theatre. This was the only problem;

“How far is it?”

The nurse thought she was being helpful “Oh, not far, just down the corridor”

“Yes, but how lng is the corridor?”

“Not long, just around the corner.”

I started walking, and she told Dearest to go and wait in the waiting room. I insisted that he should go with me, in case I fell flat on my face. She, grudgingly, assented. It turned out to be a lot further than she’d insinuated (I had to drop to a squat three times) and every time I sat to wait, she said “Shall I get you a wheelchair?” and I asked “How far is it? Because maybe” and she said “Not far!”, and every time I believed her.

Eventually, she said “Oh, it’s just through these double doors, so (Dearest) can go back now!” and indicated a pair of doors very close by. Dearest, of course, said his goodbyes and started to walk back. it turned out that she meant another set of doors, another fifty yards away. So he had to come back, and help me through them.

Do not be evasive when talking about distances, really.

Anyway, I got onto the stretcher, was introduced to everyone (Nurse, other registrar, anaesthetist again) and was cannulated in one swoop – Straight to the back of the right hand, using a paediatric needle, like I’d mentioned in the ward. She was surprised that I didn’t mind watching it be done, but was fine with it. The registrar remarked that there was a lt of money in my tattooes, and I couldn’t help but grin. Then on went the oxygen mask, and in went the fentanyl, and after what felt like an eternity of lying still and blinking, I was under.

When I came around, the nurse was talking about UKIP (Broadly in favour) and her son thinking of travelling to Japan. I recommended a working holiday visa, did my best “Farage is an outright liar, don’t trust him as far as you can fling him” and then was wheeled back to the ward.

Time passed. I got toast with two types of jam, and wanted to go home. I stood up, and the blood ran down my leg like a tap. I lay back down, and complained. The nurse, without asking, flipped up my gown in front of the whole room and assessed it as “A normal amount of blood”. Slightly horrified at having my genitalia casually exposed to the entire room without even being asked if this was all right, I went to the toilet to clean up. The nurse hammered on the door, and insisted to see me. And just reconfirmed that it was a normal amount of blood.

Now, forgive me if I’m wrong, but the Mirena insertion procedure doesn’t actually involve any cutting – The coil goes in through the existing aperture of the cervix, and sits in the existing space in the womb. I have no idea why, two days later, I’m still bleeding.

Anyway, at his point the nurse got really huffy that I wanted to go home immediately, and tod me to stay for “Another few hours”. Then apparently realised that she couldn’t have it both ways (I couldn’t be both “fine” but also “needed to stay longer”) and finally let me go.

We were back home by about four.

Tomorrow, at 14.30, I have to argue to keep my medication. Wish me luck.

A two-day sleep

It turns out that what I really needed was enforced rest.

I don’t know how to describe this without sounding terrible, but my best friend is a lot like a big, intelligent cat. The day before yesterday he turned up at my house with, in lieu of an actual dead mouse, an enormous bag of instant food (Cous cous that just needs hot water to be a meal, vegan naan bread, home-made curry that I just had to reheat, coconut biscuits) six cans of expensive fizzy pop that I adore, a half-bag of clothes that I’d left at his house over the past few months and that were now washed and pressed, and a fresh bottle of white port for us to share.

So we sat up until about four in the morning, eating food that didn’t take any effort to make, drinking port, and just generally chatting about nothing.

The day after, I basically slept like a crocodile – waking up a little bit to eat, talk, and do minor internet things, but mostly just drifting in and out of consciousness and letting various medications do their good work.

This morning, I was suddenly more useful again. Phoned the council to get the flashing light turned off (eight weeks and counting, no wonder I’ve been having migraines…) phoned the hospital to get my coil appointment sorted out (Now booked for the 17th of April), took Dog to the vets to have his nails clipped, bought and used some smell-destroyer stuff for the bit of the floor that Dog always pisses on when I leave him alone for ten seconds, and washed the bedding that I’d been living in for far too long by this point.

I was extremely pleased to note that sunset was at about 8pm today. We’re getting back to having a civilised amount of daylight.

After having done a pile of Stuff this afternoon, I had a brief nap this evening (about 9-11) and now I’m up again and basically ready to face the world. Admittedly, there’s not much world to face at 2am, but it’s a start.