It's been a while.
That's an understatement. It's been ages.
And much has happened. A few months ago I would have put stuff on Twitter but...well I might get around to that.
But to update.
A couple of years ago my sternoclavicular joint failed. It's a crappy joint to fix. Finding a surgeon to fix it was a struggle. Eventually I found the excellent Simon Lambert at UCLH and finally got repair surgery done.
That's the bare bones physically. But even there details are lacking. For instance in my first surgery they repaired the joint but had to cut my clavicle into 3 parts then plate it together because my clavicle was deformed. Always had been. It's why it levered the joint out.
I want to reach out here to my secondary school PE teacher Mr Lewis and say that I was fucking right when I told you I couldn't put my shoulders back and stand like a man. You twat.
The morning I was discharged I got out of bed and felt something go ping. Followed by a wave of pain at a 10 on the arbitrary scale. And inability to coordinate my finger movement on the left. So I told the junior surgeon discharging me there was an issue and I needed an x ray. The patronising little shit argued 20 minutes before ordering one 'just to make you feel better'.
News Flash. People with EDS are hyper conscious of body states because we do an inventory every morning of what dislocated overnight before we dare move. I know when something ain't right.
5 minutes after the x ray Mr Lambert is in my room apologising profusely and saying that I was right. The plate had come loose. He had no idea why. So I had to schedule another operation to repair it.
I still went home. With a double broken clavicle. Due to winter flu I had to wait 2 months for the next op. This time they went in with 3 heavy plates. And it held.
It feels like the Forth Bridge and presses on my windpipe a bit. But that bone is going nowhere.
They also did a biopsy and found the reason. You guessed. My fucking b list body not only can't grow collagen it also fucks up bone. My clavicle had fibrous displasia which means that the screws couldn't hold. Yet another gift from my genome.
But I skipped the part where I spent 2 months on morphine with a broken clavicle.
Ouch.
So op 2 goes well. Eventually the plates will have to come out. Then of course I had to go home to my parents to convalesce. I was pretty helpless.
That's when this gets darker.
I'm an aspie. We aren't social. We need quiet. We need space. We need to do our own thing.
My parents aren't aspies. They want to chat. Be social. Join in. They think I need that. I couldn't be alone. Mum would walk into my bedroom without knocking. If I went into a room to read one of them would follow and talk at me endlessly. One day I timed 9 hours of one sided blather from them. As I healed physically my mind folded in on itself. I stopped getting better and started withdrawing. I started drinking even more heavily.
I lay on a sofa and read. And that was all.
I used twitter as a way of staying sane but then I misread a situation spectacularly when drunk and behaved disgracefully in a chat with an old friend. So I decided twitter was unsafe for me to use. The risk to others was too much. So even that stopped.
My brother could see what was happening and kept asking when I was leaving. But when this was raised Dad said we could not afford for me to move back. As I have no income no benefits and depend on my parents for cash I had no response. I was a prisoner.
Salvation came in an odd way. My psychiatrist delisted me as I had been away so long. Suddenly Dad found the money and I was moving back. Just like that.
I suspect he had it all along but just enjoyed me being there. It was killing me but hey.
So now I'm back but so damaged I can barely function. I'm working through the beauracracy with the psychiatrist. He is treating me like a new patient as per regs. I have lost my trusted care coordinator and have a new one I don't know. It's arduous.
The psychiatrist asked me how I was.
I told him that actually I was clinically dead. I do not socialise. I don't play the guitar any more. I don't do origami. I only leave the house to get food or for appointments. I no longer cook. I don't play video games.
I'm dead and buried. I just seem to breathe a bit too much.
So that's where I am.
I don't recommend it.
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