Physio yesterday – I’d been really looking forward to it, since my last appointment had been good-but-weird.
I’ve had a rough couple of days on the hip front – Lots of pain, lots of instability, lots of subluxes. On Monday night, after having an emergency GP appointment at the behest of 111 for the amount of pain I was in, I took 6mg of diazepam on top of 70mg of morphine to get to sleep. So to describe me as “A bit groggy” on Tuesday morning was an understatement. I woke up at 10, was on the bus by 11 (No time to eat in beforehand, and the bus driver insisted that I wasn’t actually disabled “Just because I was carrying a stick” and that turned into an argument), arrived in town by 12 (hideously travel sick, dry-heaved until I saw stars about ten yards in front of a small group of evangelists, who did nothing to help), took half an hour to walk across town from the first bus stop to the second (No time to eat again, the coffee shops were packed), took the second bus to CA (Again, travel sick to the point of fainting), so by the time I got to the upstairs desk at CA I needed a transport chair and a porter. My leg was a howling mess, I was fainting whenever I was standing, my vision was blurry, I felt sick, and my hip hurt so much that I couldn’t get a whole sentence out. So I flumphed into a trainsport chair and got a porter to take me down to physiotherapy – Arriving slightly late and barely able to string a sentence together.
Physio G came out to get me, and immediately told me off for being in a transport chair; Not overtly, just a tetchy “Oh, why are you in a chair, come on, get up. Why aren’t you walking?” He didn’t actually seem to be about to remove me from the waiting room until I gave him some sort of answer, so I just replied with “Can we talk about this in the room?”
He tutted at me, wheeled me down to the physio room, and asked again.
“I’m fainting whenever I stand up, not so fast that I can’t squat, and save myself from a full blackout, but close. My hip hurts – Hurts beyond anything normal, and it’s constant. I wake up in pain, the pain spreads up my back through the day, then I knock myself out at night to get so much as a few hours of sleep. It’s been at what I’ll describe as a solid 10 for three days. If I put weight on it, it gets worse. If I’d had the option to not come to physio today, I’d have stayed at home, because crossing town was hell.”
He tutted again. Didn’t want to examine the hip at all, just wanted to reassure me – There was no such thing as a hip subluxation (There is), the head of the femur was enclosed almost totally by the acetabulum (It isn’t), that the joint capsule was too sturdy to let the head of the femur move out under anything less than the pressure of a car crash or similar (True, in healthy people who have anywhere near sufficient collagen) and the thing that I thought was a “sublux” was just the greater trochanter moving past the glute medius (It isn’t, I can feel the difference). He described the problem as just being “Clicky hips” which was “Common in teenage girls, but most of them grow out of it” (Despite the fact that I observed that it happened a lot as a child, and really hurt, stopped when I was in serious training as a teenager, then started again a few years ago).
I told him that the GP yesterday had told me to ask for a steroid injection into the hip, and an ultrasound. First he bit my head off over “WHY would you need an ultrasound?” and then only reluctantly backed down when I, fairly reasonably, pointed out that it would show if there was soft tissue damae or inflammation that made the hip worse. He then said (Wrongly, as far as I know) that physiotherapists couldn’t ask for either ultrasounds or steroid injections. And then he was in an even worse mood.
He gave me some knee exercises – Holding the knee at 60 degrees and extending the foot against a wall, to strengthen the quad, some hip exercises that C2 had given me already, some shoulder exercises (Hold a stressball, straight-raise the arm), and some back exercises – Sitting straight, not slouched, and doing pelvis tilts. I reminded him that I’d not sat up straight, or even sat in a chair at all, for several months. I reminded him that doing so was painful, exhausting, and that it was a goal in and of itself.
And that was the second time that he told me that I was doing a pain avoidance strategy – First, that the muscles in the shoulder just “wouldn’t work” because they were trying to avoid the pain, but for some reason for my back and my hip, he very definitely suggested that I was putting some concious thought into being… In pain? Floppy? I think the word he wanted to use was “Lazy” – He’d called my shoulders lazy, he’d described me as anxious before. He seems very fixated on all of my coping strategies to be “bad habits”, and he described the movements that reduce the pain and appear to return the bone to the right place after a shoulder sublux (oddly, he WAS happy to call a shoulder sublux a sublux, just not a wrist or a hip) as “funny stuff” that I needed to stop doing.
At this point, after having been asked to try a couple of exercises, the pain in my hip pinged over from “Deafening” into “Complete obliteration of the self” and I jut froze up and stared into space, trying to signal that I couldn’t hear him at all because of the pain. He wasn’t curious about the pain, and didn’t even apologise for making me do an exercise when I was already obviously in agony. It subsided, slowly.
And then he started on the patient community. Suggesting that we’re all self-reinforcing bad information, and making each other all worse by describing “that painful thing where the joint jams up and the bone looks like it’s in the wrong place and the limb goes completely weak” as a sublux, and that we were just being superstitious and panicky and all silly.
He booked me in for January, my final session, and seemed very satisfied that we were on the same page and that next time he saw me I’d be 100% healthy.
I made it as far as the toilet in the upstairs reception before I started crying.
I made it into town before I’d decided that I was an idiot who’d done nothing but inconvenience people because I was a stupid insane whiny hypochondriac for three years, and that I didn’t deserve to live. I felt guilty and ashamed for the number of times that I’d had to cut short or cancel trips out with my best friend and his family because I was too ill to continue – Because I couldn’t walk. Worse than that, for a few split seconds, I resented my ill friends – I thought that they, like me, just had insufficient willpower and were reinforcing bad behaviours in themselves.
I was sitting down behind the abandoned Chinese supermarket, next to a couple of piles of human shit and a few scattered needles by the time I had got around to thinking about all the doctors’ time I’d wasted over the years – The number of genuine looks of sadness and doctors and staff staying late to look after me. I thought about the staff at the pool who had to put up with my constant wobbling around. I thought about the paramedics who had to give me nitrous and muscle relaxants, when they could have been attending to actual emergencies.
I felt like a pointless drain on everyone around me, and worse than that I felt stupid. I felt both like I was a gullible idiot who’d been taken in by seemingly-helpful people, and like I was an evil manipulator who’d wasted the time of too many consultants.
I fully intended to just open my jacket, take my drugs, and fall asleep. Hypothermia would be pretty quick in weather like this, sped up by not having eaten for a few days and by a full daily dose of morphine making my skin flush, chilling my blood down faster. I’d exchanged texts with my best friend a few minutes earlier, saying I was on a bus and going to do some shopping then go home, so nobody was particularly expecting me. It was quiet and out of the way and it didn’t take any courage that I didn’t have, just an extension of the wilful laziness that I evidently did have in spades.
I decided that I’d not do anything hasty. If I was going to leave in a few hours, I could use them wandering around town, spend a ludicrous amount of money on something just to see how it felt, maybe go and sit by the canal for a little bit. I managed to trick myself into going for a meal at the vegan cafe, and from there, onto a bus home.
I finally collapsed into a heap of wet leaves about two hundred yards from my house, from a mixture of cold, exhaustion, nausea and pain. I lay face down, next to a busy road, for what must have been just under an hour. When I finally came to, a group of pedestrians had literally just passed me, without stopping. My leg hurt. It burned, hot enough that I couldn’t fall back into unconsciousness. I dragged myself down to the old railway tunnel, (150 yards to go) a bit of shelter from the elements, and threw up a few times. I walked along it (125), up to the top of the ramp at the foot of my road (60), to the wall next to my neighbour’s house, where I could lean and try to stop my head from spinning (20) and then finally fell through the front door of my own home and curled up on the settee.
It was 6pm.
By midnight, I’d looked through my file – A+E admissions, letters from hypermobiity specialists and rheumatologists, observations from on-call doctors and my GPs; Plenty of pages saying “We saw this patient, with a dislocated wrist which had occurred spontaneously.” “The hip had become subluxated and the patient could not walk” “This patient has clear and severely disabling hypermobility” “The muscles had locked, meaning that diazepam had to be administered before the patient was able to successfully manipulate the joint back into the correct position”.
Years and years’ worth of highly qualified people telling me that they had seen, with their own eyes, exactly what I had described. People who outranked a non-specialist physiotherapist in the same way that a field marshal outranks an airsoft enthusiast. And most importantly, the note from the specialist hypermobility clinic saying “You seem like a fairly astute person – If a meical professional says something that you know doesn’t make sense, and doesn’t match up with your experience, just ignore it.”.
So, what’s the point? Well, I think my points are basically what I always say;
-Think before you speak, because as a medical professional your words carry weight that they wouldn’t otherwise. Your patients will want to be “good enough” for you, and if you make them feel like failures, it will hurt them.
-Educate yourself. The physio would have been correct IF he hadn’t been talking to someone with Ehlers-Danlos syndrome. He should have read the notes, even if only the physio pack, before making pronouncements.
-Educate yourself. Identify when your doctor is going wrong, and be prepared to challenge them. Demonstrate things if needed.
-Take any new information and add it to the information that you already have, given appropriate weighting. Don’t let one bad medic undo the word of a dozen good ones.
I think I’m going to be fine. I’m sad and angry and still in just as much pain as I started with, but that’s just normal. But, really, think before you tell someone who’s in pain that they’re just bringing it on themselves.