So, yesterday was rheumatology, with not really Prof McG, but a doctor under him, who I’ll call Dr Blue.
We’ll start with the way that by the time I got there I was so violently car-sick I passed out in the waiting room. Shaking, freezing skin, grey lips, grey to the roots of my nails, eyes shut to stop the spinning, clutching a sick-hat like it was a rosary, whilst the two waiting nurses fussed and patted my arm and looked genuinely concerned. And as the carsickness wore off, the pain in my shoulder faded in.
After about a quarter of an hour of waiting, one of the nurses put me in a consultation room, on a bench, with pillows, and I drifted off into quiet overwhelming-pain land for a little bit.
After a while, Dr Blue arrived, and she was worried for me. Step one was a really good sign – Asked what was wrong with the shoulder (though didn’t seem to understand that “main problem” didn’t mean that the rest of me was fine), got me to take my shirt off, then got me to move my arms through a series of symmetrical movements to view the difference between the two, then the arm on its own to check for the pain (Determining that the pain was “all the time, other than when I was lying completely flat”) and then asking about when the pain started, and if there’d been any examinations since then.
When I said, “No, not deliberately, but I did get x-rays when I’d crashed my bike two months ago” she immediately got me back into my shirt, and moved into the next room, where she could access my records and bring up my images. Nice, clean, non-cracked bones, no calcific tendonitis. Very good chance that it was just a lot of soft tissue damage from constantly dislocating and relocating.
She said that, once again, I was doing everything right – Keeping the muscles warm, trying to move as much as I could, getting anyone I could persuade to massage it to massage it – She approved of my having decided to train myself as a physio, she approved of my using Maitland for basic manipulations, she approved of my using topical irritants – acupuncture needles, chili oil, self-harm – and she generally just approved of my attitude. She said, even without needing prompting, that hypermobility syndrome tended to frustrate medics, purely because it was so difficult to treat, needed such a multi-disciplinary approach, and would just relapse all on its own, even if you were doing everything right, sometimes.
She sent another letter to the GP’s practise to ask them what on earth had happened to my Stanmore referral. I still don’t really expect to ever hear about that again.
Then she asked about what medications I was on, and when I got to “diazepam” she got the pinchy-frowny face that doctors only get when they’re about to say something either wildly ignorant or wildly offensive.
“How much of that do you take?”
“Sixteen miligrams, a month.” I said, “Which is why most of the time I just have painful spasms that make my nails go blue.”
“Oh” she said “That’s good, it means you won’t get addicted. Nasty stuff.”
I decided not to bother protesting. No point in getting labelled as a drug-seeker, when I’ve been coping, just barely, with a lot of pain. At least I’ve been coping. But then I had to protest, because she decided to add;
“Have you tried any complementary therapies? Like aromatherapy, maybe.”
I think my facial expression could only be described as anatomically improbable and upsetting to small children.
I didn’t have the strength to complain. I just suddenly, immediately, wrote her off as an ignorant fool. It was probably a good thing that it was right at the end of the consultation, because up to that point she’d been perfectly reasonable and had mostly been talking sense, even if she did partake in the unforgivable delusion that addiction was drug-dependent.
I left, taking the prescription for capsaicin down to the pharmacy, and booking for my next three-month appointment with Dr D again, which will hopefully this time actually be with Dr D.