I am feeling juggernauty today. I am going to crush people under my hooves and hang their skins from my antlers as a warning to the rest. In the words of someone who was wrong, but had a way with words – “Нравится вам или нет, но история на нашей стороне. Мы вас похороним“.
So, I had my appointment with Dr Rpm yesterday via phone since I wasn’t walking well enough to get to the surgery.
I said that I’d taken the Imigran, twice, and that it did seem to work, sort of, or at least worked well enough to be better than having a full-blown migraine. I asked if it could be taken regularly, safely, and he said it could be. So he added it to me repeat script.
And then, “Oh,” he said “What else are you taking?”
I started listing “Diclofenac-”
“What’s that for?”
“For hypermobility syndrome.”
“Hmm. Go on -”
“The MST tablets? What’s that for?”
“For hypermobility, again”
A sharp intake of breath.
“How long have you been on them?”
“About a year, maybe a year and a half?”
A sad sigh “Oh, we’ll have to bring you in to get you weaned off them, then”
I feel my heart rate go up.
“Oh, they’re just not good to be on forever, opiates, we’ll see about weaning you off”
“But without them, I’ll be in pain.”
“You have to book an appointment so we can taped you down and get you off them.”
“Book in. You have to come off, it’s not good for you. You’re in on the 20th anyway, we’ll start then.”
Appointment over. My hands shaking, I sleep for an hour to get my racing anxiety back under control.
Upon waking, I was myself again, fury and reason;
1) I’m using them as directed by my consultant rheumatologist, a plan that was also signed off by the national hypermobility clinic in London. If anyone is going to change my medication that radically, it’s going to be the specialists, so book me an appointment.
2) I’ve not had any adverse effects that I can’t deal with. If you think that damage is being done internally, get me a liver function test. If that shows any damage, then we can talk about “weaning me off”.
3) If you take me off morphine, you’ll have to find another painkiller which does the same job. Long term. Safely. Not a GABA-analogue or amytriptalin, since I get horrific side effects with the latter and the former aren’t licensed for painkiller use in the UK and also have no evidence base for use in the treatment of recurrent acute musculoskeletal pain.
4) Clinical guidelines for both EDS-HM and multiple herniated discs are to prescribe pain relief. First line is an NSAID, then the opiates until one is found that works. Morphine works really, really well. Morphine keeps me out of hospital.
5) If you take away my morphine, I will turn up in hospital every couple of days needing someone to reset my dislocations like you would on a fibrotypical person; Putting me under and booking a surgical team. This will be expensive and waste time which could be used treating people who really need treatment. I will also scream the hospital to a standstill in the process. I have an eight litre lung capacity from a decade of competitive swimming, and am a decently well-trained contralto. I can deliver you four octaves of regret at having me in your department.
6) I can also use all of that shouty energy to deliver an impassioned speech to NICE and get you struck off for letting your personal morality override clinical guidelines, you abstemious shitweasel.
7) You’re going to have to do better than “Boo hoo bad for yoo” – Show me studies, relevant ones, about patients in my position, about doses similar to what I’m taking, about comparative harm of a life on opiates and a (clue: much, much shorter) life in unimaginable pain.
8) You’re going to have to explain your reasoning not only to me, but also to rheumatology, the national hypermobility unit, the pain clinic that I still have an open referral to, the pain psychologist who said that taking my morphine away would be tantamount to killing me, the local hospital trust who will be deeply unimpressed with your attempt to increase unnecessary A+E admissions, Stanmore – who are relying on me being pain-free and in perfect physical condition so they can work their magic, my new physiotherapist who would rather work on someone motivated and cooperative than in pain and immobile, and to my friends and my partner to whom you’ve just given a full-time caring responsibility, since sans-morphine I will be unable to function well enough to feed, clothe or wash myself.
9) And this is me we’re talking about. You’re going to have to expect to see me every morning, at the surgery, at 8am, probably with a deckchair and a book so that I can wait all day, until you reinstate my appropriate medication.
If all of that sounds good to you, feel free. I’ll see you on the twentieth.