I awake to my shoulder screaming for attention. It's fully dislocated itself again and is refusing to reduce. I know of old there is no point in my seeking emergency medical attention as last time I did so even A&E were unable to reduce it for me. If it remains this way eventually I will be forced to make even more difficult decisions and somehow find the money from my benefits to pay out for specialist private physiotherapy, the NHS in its infinite wisdom having just discharged me from their physiotherapy services much to the reluctance of the actual physiotherapist as there is no room in the current NHS for patients requiring on going therapy for chronic problems unable to 'get better' for the endless reams of form filling targets.
This time unlike the last I happen to know what the trigger for such a substantial dislocation is. It's now been several months since social services decided despite the constant dislocations I experience and living alone with no family back up that there was no need for me to receive any care or support services from them and removed all the services and funding I'd received to that point. It won't shock anyone to hear my local authority are broke and going through a process of 'reviewing' all care packages whereby most people are ending up with if they are lucky vastly reduced packages and if not, nothing at all. I could complain, but only complain as there is no actual appeals process, but I simply cannot face the trauma and destruction that this would cause to my life to get back a service that was so substandard and at times abusive that I am as yet undecided.
So, several months of having to find ways to cope with the daily tasks the social worker adamantly refused to see how fragile and unstable joints would cause any problem with has predictably put massive strain on my body. I have been in some respects incredibly lucky, unlike the dark days before I was diagnosed I now have friends, a new and wondrous experience to me, friends who want to help for no other reason than they care for me as I for them, but of course there is a vast gulf between such support and that needed day to day. There's an even bigger gulf between that and what I will admit to needing but that is a different issue.
On Saturday night, I had as I mentioned a rare night out. It's now monday morning, and I've been unable to leave the house since then. I have to get the cat to the vet today, but I'm fortunate to go to a lovely vet practice where they come out to wherever I've parked and carry the cat into the building and later back out. Usually a neighbour assists at this end. The trip to the vet will be I suspect the only time I manage to leave the house today. It will also be exceedingly painful even with assistance. I'm still paying for my night out, for those few precious hours of pretending to be like everyone else, pretending not to be in so much pain, for smoking enough cannabis to allow me to be out with my friends, to sit on hard uncomfortable chairs, and even for a few joyous, blissful wonderful minutes to dance, stoned enough to be able to ignore the warning signs my body was giving me, yet enjoying far too much the simple joy of feeling the music flood through my body as I writhed to the beat, eyes closed, spinning ultra violet poi above my head in a mesmeric pattern.
It was worth it. I was only out for a few hours, danced for maybe 15 minutes at most, broken up throughout the night into smaller amounts, and for the last time had to be held up by my friend but it was worth it. It was worth the pain yesterday when I could feel my hips screaming at me. Worth the pain I can feel in my shoulder now as the bones grind and scrape over each other. Worth being unable to even walk out of the venue and having to be carried out by my friends my hips by that point so unstable I could not support my body. Worth the constant nagging fear of being spied upon by the DWP, that those few, rare short hours of freedom would trigger an investigation to remove benefits, ignoring the consequences those hours bring. Worth potentially not being able to leave the house for the rest of this week. Worth not being able to feed myself. Worth all that and more for a few minutes where I could forget and just be.