When I'm deathwalking and it really hurts, really really hurts, my mind is so clear ideas swirl and coalesce in perfection. Back home without such pain I lose them. I'd put something witty but I forgot that too, though it was definitely there waiting to be typed when the pain was most.
I never did go for that hip x-ray. After waiting a few days resting it seemed pointless, like most of the injuries Ehlers Danlos Syndrome causes the damage is to the soft tissue rather than the bones and doesn't show on x-ray. Having had many x-rays and doubtless more to come in my future I like to avoid them if at all possible. This time it has been possible, although I may need to have a scan at some point.
My hip is more unstable than it was before. After discussing things with my physiotherapist, J I am fairly sure I have torn the acetabular labrum in a posterior position. Usually my hip dislocates out to the side when I weight bear, but since the kerb step fail moment it's been dislocating out to the side before swinging back and dislocating. It feels like trying to walk on a femur locked into a permanent figure of eight movement. Tricky.
Next week I'm booked in for an hour and a half of physiotherapy. I'm not even thinking about the cost, it's pointless. The appointment is so lengthy because we plan to do various assessments so that a longer term rehab program can be worked out. Then I'll go for monthly physio appointments and work at the exercises myself. Much has been learnt in the past 5 years about physiotherapy for hypermobile people and how important 'brain retraining' is for bendies. The problems with proprioception experienced by hypermobile people are thought to be because of the additional joint movement. The joint is able to extend far beyond normal range and unlikely to be able to stay in a fixed position once it's there. This means the signals sent between muscles and brain can never get a true fix on the actual position of the joint, let alone the relative positions between body and inanimate objects. In practice this means many people with Ehlers Danlos Syndrome have comedy moment accidents. I've had to go to A&E and explain that yes, I really did walk face first into a lamp post, stone cold sober and yes, I really did swim face first into a wall.
There are reasons I put myself through all this torture. Various people have wondered why I don't have a power wheelchair. There are many reasons for that too, but even if I did have a suitable wheelchair or scooter I'd still go deathwalking. Using a wheelchair full time would mean my already weakened muscles and ligaments would weaken further, faster. The end result of that would be that I might have less hip dislocations from being on my feet, but I'd have more hip dislocations whilst sitting down. Having experienced both situations I'll put myself through any amount of deathwalking to stay on my feet part time. It may be a nightmare, but it's far less of a nightmare than the alternative. I also need to consider the fact that at some point in the future I will need bilateral hip replacements. The fear of repeatedly dislocating artificial hips keeps me awake nights. A long term physiotherapy program is the best chance I have of staying physically strong enough to enjoy life.
It's just a shame that kind of specialist physiotherapy or wheelchair provision isn't available on the NHS.