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.


Well, my MRI results are in. Phone appointment with Dr R, who is increasingly used to my not physically going to the surgery (The surgery claims not to do phone appointments, but given that it’s that or a home visit they do them when needed) and seemed quite hopeful that it’s not too bad.

The butcher’s bill was three herniated dics in my L3, L4 and L5, nerve compression in the L5, and bit of arthritis. No surprise that it’s causing pain, but not bad enough to warrant surgery yet. As such, I’m being booked in for physio at the medical practice – Long waiting list, but it means not having to schlep over to CA every time, and no chance of running into the physio I dislike.

This does neatly and immediately explain why sitting upright or standing still is excruciating, and why being in water is the only real relief.

Unrelatedly, and in an unusual move, my left knee is dislocated. My patella is basicaly on the wrong side of the joint, and won’t go back. This isn’t normal, even for me.

Getting out the tape measures

A post of two halves, really.

First, I have just got back from a swim in which I clocked in a <6m 400m and a ~15m kilometre. Ended up sharing a lane with a bloke who just outclassed me, like a xebec outclasses a sloop, and trying to keep pace. I failed, obviously (He had youth, strength, and a complete lack of ehlers-danlos on his side) but I felt so much better for at least not completely embarrassing myself out there.

The second part is that today was my spinal MRI at CA.

Wandering through the usually-busy hospital, and finding it completely empty but for two radiologists in one tiny department in one tiny corner of the building was frankly eerie. Even on quiet times during the week there’s reception staff at the desks, or porters and cleaners going about their errands, but today, being a Sunday, there was just the dull hum of the lights to break the silence. Main reception was closed, the automatic admission terminals were switched off. We navigated down through the halls into the tiny annexe containing radiology, Dearest being far less perturbed by the empty hospital than I was.

Upon getting to the MRI suite there was a card on the front desk saying “Please use the phone provided to ring extension 35XXX when you arrive, and fill in one of the questionnaires on the clip boards. All the staff are busy right now.”

I was delighted by this. This was efficiency as I enjoy it – All the staff present being MRI technicians, and no disclosures to non-essential staff. I phoned the number and got a rather sweet “Great, see you soon, you’re up next!” then filled out the questionnaire which confirmed whether or not I was a cyborg and about to break their magnets.

For future reference; Titanium body jewellery is perfectly safe to wear during an MRI. I took out anything that I couldn’t guarantee the provenance of, replaced a few things with plain titanium BCRs from my piercer.

Anyway, I was taken through to a cubicle, where I took off anything that had metal in it (Jeans, shoes, hoodie) and put all of my clothes and things into a plastic shopping basket, which one of the two technicians took through to the MRI anteroom for me. I put on a gown and padded along after her in my bare feet, clutching a copy of Reise Reise and a bottle of morphine.

I’d decided to pre-dose myself with plenty of morphine and a diazepam before getting into the tube, to allow myself to stay still for longer more easily. As is the case with EDS, lying still – and especially lying still in a position that I didn’t get to choose for myself – was going to be a problem, though exactly what kind of problem I wasn’t certain of (there’s so many to delightful possibilities!)

I was given a pair of headphones, a squeezy panic button, a pillow for my head, and a support for my knees, then slid into the tube. The machine itself was a delightfully-modern-looking Siemens one, open at both ends to lessen the claustrophobia, with pleasant sea-green glass on the frontispiece; A quick image search reveals that it’s a Magnetom Avanto, known for being both quiet and fast, and operating at a magnetic field strength of 1.5T. I wish I knew more about the physics behind the MRI itself, other than the slightly obvious “There’s a huge electromagnet, which excites the hydrogen atoms in any water-carrying structure in the body, which causes them to emit radio waves. The switching on and off of the coils of the electromagnet allows different types of tissue (with different densities, different positions in the body, and different water contents) to return to a non-excited state at different speeds, making their radio waves look different, which are then picked up by the radio receiver in the machine and translated into an image”.

Most usefully, from the point of view of most people, the Avanto comes with a pair of metal-free headphones, so that you can listen to music whilst in the tube, as well as being able to hear from the technicians without anyone needing to shout. I’d picked Reise Reise as my MRI album, since it’s good and loud, very familiar, and has a lot of thunky mechanical-sounding passages in it, which go nicely with the clicks and whirrs of the MRI.

After about five minutes in the tube (Literally, a few seconds into Mein Teil) my left hip started to scream at me. Not just a dull ache, but an outright burning, screaming, unsettling agony. I wanted to lift a hand to it, crush it, stretch the knee upwards, shift around a bit on my arse… but of course, I was in an MRI machine. I grit my teeth, and bore it. This lasted for about two minutes, until I was squeezing the panic button in a complete mess and begging for morphine.

I was let out of the tube, clutching my leg and making pained noises, and was fully prepared to be called a hypochondriac and a timewaster and an idiot. And I wasn’t! The two technicians were incredibly understanding, helped me stretch out and stand up, get my morphine and my diazepam and offered me a quick break to stretch my legs and let the drugs to their work. I took a minute or two, returning to the table, and this time had them strap my legs so that I didn’t need to keep hold of them on my own. Back into the tube I went, to find my CD was now halfway through Dalai Lama.

There were three sets of images taken, and after every one the tech paused the CD and told me that she’d finished another one, keeping me updated on the progress and giving me good estimates on how long each image would take.

I’m increasingly feeling that MRI technicians have really taken the “Patient experience is important” part of healthcare provision incredibly seriously. I can’t think of a time where I’ve been treated by anyone in the healthcare services as if I was on a very good airline, rather than being treated a bit like I was either a fascinating geological specimen, a much-loved but still stupid Herefordshire bull, or a drug-seeking twattock. Effectively, this was like taking a train journey in first class, or an intercontinental flight; The two techs were nice to me, professional, efficient, and put both comfort and precision on a high priority.

By the time the CD was halfway through Los, the scan was all finished. I asked if I could look at the images, and was shown them with some interest; Of course, they couldn’t interpret them, but I was allowed to have a look anyway. I was fascinated by how asymmetrical my back muscles are (and by how little fat there is between them) and by how the vertebrae were so big and chunky – I have very short, very fat vertebrae. And a very curved spine. And a very thick spinal cord, which might have had a syrinx, but I can’t really tell since I’m not an expert. If I can get a copy of my MRIs for the blog, I will definitely do it, because they look awesome.

I got dressed, and was told to book a GP appointment around the end of the week to have a proper look at the results of the images, and their official interpretation.

I’m now really, really curious.

Year of the sheep.

After my last GP appointment, my hip got steadily worse.

On the 29th, I rang NHS Direct at about 21.00, to see about getting a clinician to look at it. Long story short, by 4am on the 30th I’d given up, and went to bed with a blue foot and a leg I couldn’t use.

The next morning, I phoned my GP, who “Would get back to me urgently”, and by about 13.00 I was on the phone to Dr Hpm, who sent me immediately for x-ray at any local hospital.

So, by 14.00 I was in a friend’s car, on the way to not one of the three usual hospitals (CA, StJ, LGI) but to the neighbouring Trust, basically because the scenery over the hills in the snow is rather nice and it wouldn’t be full of drunks and busyness. And, you know what, it was really nice. The receptionist booked me in and did all the digging for me to find out where I was supposed to be (A fax from my GP had been delayed, so I’d arrived without any paperwork), a nurse got me a trolley to rest on, since the chairs were killing my back and hips, and the radiographer (From the home country!) was really quick and professional and friendly. I was in and back out in less than an hour – Didn’t get to look at my own x-ray, which I usually like doing, but will have the results within the week.


And then this morning, I rang UCLH to see about my Stanmore referral, who told me to ring Stanmore – And they’d lost it. So, on the 2nd, when I go to my GP again, as well as asking for my medication to be reviewed and getting the results of my x-ray, I’m also going to have to push for the referral letter to Stanmore.


Oh well, happy new year, and hopefully the next one will be better.