July 30th - blog 1 - the end of hospital and into my life...

I am very much in practical mode this morning and in the phase of preparations to leave this place. It’s funny because I’ve been leaving since Saturday really, when I knew that Dr Sinha was either not going to ask the relevant questions of the relevant people or that we were undoubtedly going to get the response that there was not enough specialist help. It was a pathetic performance really where the answers depended upon the questions that were asked and the decisions depended entirely upon the judgement of how much specialism was required. They couldn’t have come back with any other answer than to go to Hayes Grove, even if (and I strongly doubt) conversations were had in the first place.

I also doubt that the physiotherapists have ever been consulted – I don’t actually have one since Janey left – I have been left in the hands of physio techs who are neither qualified nor recognised enough to give official verdicts apparently, but I know for a fact that they have not been asked.

Anyway – after a whole rigmarole yesterday where I knew beyond a shadow of a doubt that there was going to be transport problems (and indeed there are…surprise, surprise, thanks Dr Gordon for your exceedingly excellent co-ordination once again…!) I am in preparations to go. I am taking my own medications to last me at least for the first week or so, have my bowel stuff prescribed so it’s official and have asked that Claudia speak to Hayes Grove and express the need for physio, ask questions about pressure mattresses etc. etc….it’s all sort of in place.

The only thing that remains is to get there – and yes I am nervous today. I am anxious largely about the mental un-known-ness of it all, the space that they are going to force me into (and that’s what came to me to write, not something I’ve been thinking) and the practicalities of how the routines will take shape there on a daily basis – that is what concerns me right now. Beyond that, the assessments etc. are unavoidable and necessary and just par for the course. What they make of me and their judgements I have long since learnt are largely their issue or perspective and not mine. All that is required from me in those circumstances is navigation and placidity. I hope that that is what I will bring.

In terms of the day-to-day structure, the dietary intake and the food/meals and the restrictions that I am going to be under I know it will take a while to get used to the system but once that has happened then I will work within it to the best of my ability. I will always, because of the kind of person that I am, feel the need to flout some rule, somewhere…but I hope this will only be a minor one and I hope beyond anything that nothing I do, no action I perform or behaviour I exhibit in innocence will be misinterpreted and over-analysed into seeming to portray something that was not there. That has been the problem here. Perpetually fighting the diagnosis lends itself to being perpetually under examination and hyper-monitoring for it, ‘just in case’. The denial leads to extra wariness where everything – innocent or not – is seen through questioning, examining eyes. Perhaps going to a place where they are expecting and already imagining me to have difficulty they will approach it differently – attempt to ‘help’ with anything seen as subterfuge instead of use it as evidence. As such, I may surprise them. Or I may surprise myself.

I was speaking yesterday and the problem I have left with food is that it’s still around. It’s the 24/7 ness of focussing on putting on weight in a hospitalised medicalised environment where I have been largely on my own that has leant itself to forming a small obsession with trying to calorie control my life. Food went from something I didn’t have to something I had in measured controlled and judged quantities etc. Now I want to relax and allow it to do its job whilst giving me a little bit of a life…of course it is a focus but it doesn’t need to be the only one.

And mostly I want the whole background of others’ doubts to disappear within my life. I don’t have to prove anything to anyone, or fight anyone, or assert my sanity or accuracy, my past, my beliefs etc. in order to do that – I just have to get beyond the point where their help may be perceived necessary. And I hope that that will happen soon. I was weighed today – after a glass of lemonade as per usual – as 34.65 kilos. I do not know the accuracy of all of this – my imagination would lead me to believe I am somewhere around 34.5 kilos…but 34.65 is a bloody good thing to show when I get there – and I knew it was there inside me…I couldn’t believe I had not put on weight…

Nevertheless, working on 34.65, this sends me there at a BMI of 13.5 and is (in English!) 5 stone 6 lbs, 6 ounces. (5 and a half stone). This is good. This is shit…what am I doing at 5 stone something? Christ almighty – still. Only 2 and half to go, and perhaps only some of those at Hayes Grove.

Anyway – must go and be practical now. There was more but I cannot quite get my head and self in gear enough to write it all down. It’s to do with not being anything perfected about going there – no anger, no vulnerability, no gracious acceptance is there in a perfected entirety. It is all there somewhere and it is an allowance of myself to feel disconcerted and de-constructed throughout it all that facilitates me feeling better adult and better self than ever. I’m not cultivating one or other side, one or other feeling, one or other behaviour as ‘desirable’. I’m all of them and none of them – and everything in between and that’s fine.