06/05/2019
Having a real bad one tonight. The painkillers can’t seem to damp the stabbing ache in my joints -and it’s all of them tonight. Shoulders, elbows, wrists and knees. Tapping this out is taking a long time. I haven’t written for a while as I’ve had a dip and stopped eating again. I’m miserable and cold and in pain sitting here at 4am wearing one of my outdoor fleeces and a fucking beanie hat to keep warm. I’m nearly 4 months down in now in cell 15 and I’m miserable and I fucking hate everything. I wave the physios away and I don’t want to eat.
11/06/2019
Things have changed since then but I thought I’d leave the excerpt above in place as this was the only thing I got around to writing during the time that I crashed again.
The reason for the big gap in updates is that the initial positive vibe attitude I had on returning from rehab died quickly. My misery at being back in the same room and the joints meant I very quickly slipped back into my bad old habits of not eating and spending my days hunched up and miserable in fucking freezing dark cell 15. I had 3 and a half months under my belt by this time and felt as if there was no way forward.
Please believe me when I say the pain in all my joints was agony. I’m a fairly typical type of guy (apart from the rare blood cancer obviously) and I generally handle pain well. I’m not squeamish and I’ve got more than my fair share of scars and dents on my body and head as a result of mostly alcohol fuelled adventures - at least one that should have killed me. But I can handle pain, dentist - no worries, busted bits of me? - no fuss. Edit I’ve just remembered that I was stabbed in the face and through my left lung by a couple of chancers at a party in Hemel Hempstead. ( how the fuck could I have forgotten that?) I had a very prominent scar running down my left cheekbone all through my 20s, 30s and 40s. Luckily now it just looks like another wrinkle.
This was something different - without meds, the slightest movement in my shoulders, elbows, wrists, knees - though weirdly not my ankles, would send a slow, dirty, grinding wave rolling across the joint, instantly pinning me back to the bed. It took a while (and a different consultant) to be taken seriously and to get my meds boosted. The thing is it’s almost junkie like - as soon as I was dosed up in the morning I’d wait the half hour for them to kick in - but all the time I’d be worrying about the next dose. Would the nurse come in time ? or would I be left laying there waiting as the meds wore off and the acid fingers of pain started to immobilise my joints.
I really have no idea how long this second slide went on for. I was a hunched blanket clad shape turning my back on the world in a darkened room . For a while I tried to put on a sheen of normality (!) for visitors, but finally after my weight plummeted and bottomed out at 51 kg I cracked - that’s the same as a bag of cement I used to sling over my right shoulder.
Like most people with GVHD of the eyes, I can’t cry - I can produce a couple of feeble tears from my left eye - but that’s about it.
I feel robbed - there’s no way of divesting yourself of inner pain by putting your head in your hands and having a damn good soul cleansing cry and then enjoying the feel good hormones afterwards. I’m trapped - the best I manage now is breathless sea lion type noises that leave me deeply unsatisfied and still full of grief.
But I reached out. I told my wife that I had reached my limit. My resilience for coping with a brave face was gone. I’d tried all the equivalencies - I wasn’t in jail, I wasn’t in a Russian gulag it was only 4 fucking months after all. This stuff had held me in check for a while, but it wasn’t working anymore. I told everybody that walked into my room that I needed help - and again of course the people were there. I started having sessions with the psychiatrist and dumped all the stuff that had built up in me straight into her lap. The lightness of being heard by someone lifted me and I began to eat again. I think the shrinks report on me galvanised a lot of people. Where previously I had felt like one of those sushi meals going round and round in circles, now I could sense movement - I started getting feedback from my consultants- my meds were reviewed (and halved).
I suppose you could call this round 2. I’ve picked myself up and I’m ready for the real thing this time. The one that sees me out of Kings and into a rehab unit by the end of June or early July at latest.
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