How Stuff Works

There is a small department in my brain called the Ministry of Propoganda. Yestereday I felt terrible and demoralised enough that they brewed up their strongest Polish coffee, ordered in curry for everyone, and worked into the small hours.

This morning they issued a statement;

“Yesterday was a perfect, if disappointing, success. Body proved that it can, and still enjoys, riding a motorcycle, other than having coordination problems in wrists and ankles which were made worse by badly-fitting equipment and anxiety due to comparing itself to the two other riders on the training day.

These issues are surmountable, by getting first pick of the equipment and by taking longer to become familiar with the position of the gear lever. This is a conjecture drawn from the initial problems with the accelerator and handbrake, which were smoothed out with practise over the course of the morning, and wherein the right wrist was suffering from a similar numbness and stiffness to the left foot.

As such, the correct course of action will be to arrange for a private training day, to remove the pressure of other riders, the need to compromise on safety equipment, and to allow one-to-one coaching which will be more effective in identifying faults.

Congratulations is due to Body, on providing such clear and useful data for the furtherment of our cause, and to the Operator in ensuring that Body was not taxed to the point of collapse by datafinding.

Long live our sacred nation!

– The Department of Propoganda.”

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Shying off fences

CBT today. Made it to the town centre by 7.30, was all prepared and stuff, got on really well with the instructor and everyone, but couldn’t keep up with the ableds. So, instead of spending the afternoon out on a bike, I came home at midday. This fits the pattern very neatly with every other new thing I’ve tried since diagnosis, and also with every old thing that I’ve tried to re-learn.

Lost some money, set my confidence back, feel like this was confirmation that I will learn no new skills and get no better at old ones, so am now officially waiting for death. I have got very good at letting months pass in a haze, out of necessity, so it shouldn’t feel like too long, I hope.

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.

And it had been going so well

So, my medication arrived on Friday, sans-morphine, and because of the pointlessness of bank holidays I couldn’t get any more until today (Tuesday).

My morphine arrived. Or rather, half of my morphine arrived.

I rang the pharmacy, and was told that, no, sixty pills was all I was getting from now on. So I rang the GP.

First, there were “no doctors in”. Seriously, mid-afternoon on a Tuesday, there were no doctors in the practice which employs more than a dozen clinicians.

I first said to the receptionist that this was exactly the kind of clinical decision that the patient should be involved in, since it meant having to change the actual dosage regime. Her response was “Oh, but the strength hasn’t been changed, so it’s a clerical decision, not a clinical one, so you just don’t get as many tablets. You don’t get to query those.”

Let me put this another way; Every month you eat five tins of beans, ten loaves of bread and a packet of margarine. You have no other food, and you carefully balance the amount of each that you have so that every day you can have beans on toast. One day, you go to the bakery, and they tell you that you can now only have five loaves of bread. Suddenly, the beans don’t work as well (They’re a bit icky when you’re eating them cold out of the tin, and you feel distinctly unwell doing so), the margarine is useless (you’re having to eat whole lumps of it, because there’s no bread to spread it on) and, worst of all, you’re hungry all the time. In fact, gradually, you’re starving, because you literally aren’t getting enough food to maintain yourself.

Halving someone’s rations is exactly the sort of thing that you should consult with them over.

I’ve managed to argue a meeting next week to “review my medication”, despite the fact that I literally reviewed them last month, but this is getting beyond a joke. It will surprise nobody that it was precipitated by Dr Rh, the same puritanical hatemonger who tried to reduce my morphine twice over the past two months. Thankfully, the review (booked for the 3rd) is with Dr L, who is very sympathetic and will just nod and agree that, yes, the review that was done last month was sufficient.

There is literally no reason for doing this other than a basic hatred or suspicion of people who are in constant pain. When I’ve already been looked at, multiple times, by multiple doctors, and been told “Well, you seem to be managing your condition extremely well, and the medication that you’re taking seems to be working as well as can be hoped, and look at all the progress that you’re making” the only reasons to try to change my regimen is if you think that you can make it more effective (“So, you do really well on diclofenac, you might like some other NSAIDs, would you like to try one for a month?”) or more streamlined (“So, you take four of these three times a day, would you like to try taking six of them twice a day, or how about a patch that releases the equivalent of twelve over 24 hours?”) Not just “I didn’t like that you were taking BAD DRUGS so I thought I’d take you off the BAD DRUGS – that means you won’t have EDS anymore, right? That’s how it works?”

Fuck the society that makes us more worried that someone who doesn’t need opiates might have them, than that someone who does need them doesn’t have them.

Happy Goth Day!

It’s Goth Day, during Vegetarian Week, in EDS Awareness Month.

So I feel really celebrated.

And yet, the pharmacy forgot me again so I have to wait until Tuesday for my medication to arrive. I phoned them up at about midday to ask where my meds were which were meant to be delivered “by the end of the week” but which hadn’t arrived by 4pm today. And then they arrived at about 5pm, sans the slow release morphine. Another classic fuckup by the pharmacy.

This annoys me – The pharmacist himself is amazing, but communication between the pharmacy and the surgery is nonexistent. And, again, the pharmacy is well within a hundred yards of my house. I don’t want to need a new pharmacy, but after literally a year of them fucking up my prescriptions, I think I do.

Clockwork and empires

Today was physio at StJ, the closest thing to a specialist service that City has.

I arrived in a strange mood, since there was someone sitting opposite me in the waiting room in a tracksuit bearing the logo of my old sixth form. Regular readers may or may not know that I suffered badly enough at that school that I blame it for most of my mental illness, most of my assumption that all authority figures are venal shits who will take the path of least resistance for themselves even if it involves the literal death of the people they’re in charge of (Ask me about my school’s rates of suicides and involuntary sections if you want to see a bottle of sambuca magically appear in my hand), and the entirety of my conviction that any group of laughing teenagers is laughing at me.

So I felt a bit grim on the way in, shall we say. Further engrimmed by the way that the girl in the tracksuit looked healthy and rosy-cheeked and wholesomely, blondely successful. She had a splint on two fingers, and was reading a stack of printed notes from a third-year module at my old university. I, by contrast, was propped up on a walking stick, and felt like a worst-case-scenario.

The physio was similarly youthful and wholesome, and helpful along with it, and thus was incredibly apologetic when she had to tell me taht there was nothing they could do for me, since what I needed was a specialist – ie Stanmore.

So, no more physio for me within the local Trust. At all. I’m on my own, with my textbooks and my bloodymindedness.

I left, and stood in the sunshine, feeling the day roll out ahead of me, empty of commitments and with the only limiting factor being “You have no money”. So I went for a walk.

First stop was the cemetery, since it’s just over the road from the hospital, to stretch my legs and get accustomed to my own pace without too much interference from other people. Then, through that, I walked on through a chunk of old terraced houses and factories, reminding me very much of where I used to live before moving to my current village, and onwards to one of the main artery roads. I was looking for the motorcycle garage-slash-dealership which I had spoken to when booking my basic training.

I found it easily, and nipped inside to look at bikes and safety kit – Both for the fun reason of wanting to see what was available and at what price (And thus how much more I’d have to save up) and for the less fun reason of seeing whether I could still safely balance and  shift the weight of a bike. I tried out a little Lexmoto Arrow; well within my price range and specifications, short, comfortable, not too quick, and found that I was definitely still comfortable with it. The clerk, having chatted to me a bit about what I needed in a bike (and my specifying that small and light were priorities due to my ruined legs) was both sympathetic that I was unsure about what to do, and enthusiastic about the idea of getting me out on a bike, since he reckoned that having something “just for the hell of it” was important. I distinctly agreed.

Bikes and kit budgetted for (I’m pretty certain that I can comfortably get a bike, helmet, gloves and boots for less than a grand, which is about what I’d planned on paying, then insurance and road tax on top of that) I made my way into town and to my favourite charity shop (New cashmere jumper, £2.50), then to the Chinese market (Month’s worth of ramen and curry, £17), then on to the bus station and home.

Now somewhat knackered, but not in a bad way, and enthused about getting on with things.

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.