Juky 2nd - blog 1 - just finishing noticing things

I am tired again this morning after waking at about 10 past 5. I am pleased to have made it through the night without taking Oromorph last night, however. I didn’t want it to feel like an achievement but I like sensing that at least I’ve broken a habit. Even if I now have Oromorph every night I needed to establish both for myself and on my records that it wasn’t (and my general Oromorph consumption isn’t) habitual. That done, I feel uncomfortable and in quite some pain this morning. Its not that specific ow-ness which I always used to associate with pain but more my familiar all-over body ache.

In terms of sleeping, I do not think Beryl opposite is helping. She is being a bit onerous and a lot of a busy-body, ordering people about and trying to assert an authority she once had in a situation wherein she has very little power and is perhaps a little scared. Every night she increases the melodrama by explaining how she feels she won’t ‘make it through the night’ and then resolutely does so. It appears she may be here until the end of the week. Her sleeplessness is such that she is disturbed, and subsequently disturbs me, at around 5am each morning. Then they did procedures on her this morning which created noise. Now we have an hour’s lull before the day staff come on and the breakfasts come around. I have dozed a couple of times but it may simply be a signal to take it easy today.

I should theoretically be taking it easy every day. I am in a hospital trying to conserve energy. Nevertheless, until now there has been the high octane attempt to keep going necessitated by the general attitude with which I have been viewed. I hate seeing Natasha and being made to feel defensive because I then act like someone who has a problem eating, as opposed to myself which can be relaxed. I suppose every conversation before has held the threat of Resource drinks as a sign of failure in the background (however true or not this interpretation this is how I have interpreted the use of supplementation in place of real food). This has meant that I have automatically come from a different place to the one that the dieticians have been in. Yesterday, however, Natasha and I were probably on the same, identical page – how to up the calories in what I am doing, here’s some suggestions. I am just so habitually used to having something to fight within encounters that I was automatically in that space. And it only serves to make me look like the very person some people must still assume I am. Yet people (whether it was just the staff that were on or not, I don’t know) seemed to back off yesterday a little. Although my conduct may be unorthodox, neither Kelly nor Natasha have told the nurses I cannot continue within it. I mentioned that Mum brought things in from home because it was the only possible way to do it and Natasha said, ‘there’s nothing I can do about that is there.’ To which I replied, ‘not really.’

It is almost like yesterday’s weight meant they could not oppose my methods, simply express the need for them to be built upon, whereas last Friday they were in opposition to my style of approach. Feeling like I am flouting rules has had an impact on the way I have asked for food to be put in the fridge and the way I have felt eating my own stuff at my own times, snacking and using my own supplies. Every time I have asked the nurses for something I have felt almost clandestine in my approach. Yet Natasha was OK with the vast majority of what I had been doing, and so I almost feel somewhere that I have been validated – if only a small way – and that rubs off on my whole approach to the way I eat what I eat, and the storage of it in the fridges here. I’m doing what I’m supposed to be doing…and upping it is all Natasha requested. Being as the nurses know nothing of the quantities I eat anyway – they cannot have a role in the assessment or judgement of my behaviour any longer. I am not not doing the dieticians’ recommendations. I am actually doing them…

…wow. In a weird way I’m doing what the dieticians have prescribed, if you like. OK the prescription was obtained by my insistence and behaviour dictating much of its development, but it worked and will now continue to work – and work better. No-one can argue or object to that and so I feel as if yesterday’s weight may just have made me a little more comfortable doing what I’m doing – and increasing it. It should also mean that I do not feel as if I am countering ‘advice’ at every stage in an attempt to prove that my way is sufficient…

…I need to stop worrying this one now. Its been thought through and around and there is nothing more I can do with it. It does change a lot in the way of approach and acceptance, though alters very little healthwise and requirements-wise. Perhaps now, however, obtaining those requirements will feel less opposed and contrary to what everyone has wanted me to be doing.

Sorry that food and my dietary stuff has dominated the last two blogs. It is an important part of how I move through this hospital process. This patronising ‘aren’t you missing life?’ attitude which is inflicted on me from those who imagine I am sabotaging my own health in some way is reflecting the perception of me and also showing what I do miss. Months of my life are disappearing and yet I cannot feel as if I am approaching this wrong. Up until yesterday there was still the potential that my body was self-sabotaging and there was something to discover physically, still, or more work to be done before self-digestion was sufficient for existence. Most important of all about yesterday’s weight was the indication held within it that my own life is not sabotaged (by me, chemicals, nutrients or anything) any longer. So God knows what that opens up within me for approach and consumption. By not taking Resource I could always have been sabotaging myself, yesterday I proved that was not the point or the reason and now I feel justified in my own approach and methods…and now there can be more energy backing them because I have faith in them. That should give me all the power I need to boost the weight gain factor, up the calories and put on weight…and its fundamental.

So sorry if this has all been weight/diet and dietician/approach related. Apologies if its felt as if I’m still harking back to yesterday’s news. To a great degree I am – I have needed to understand all the things that yesterday’s news did for me; psychologically, practically and emotionally. To recognise how it changes the dieticians’, nurses’ and my own approach and vision has been essential.

God knows what today will bring, however. Whether Dr Gordon will show her face or not I’ve no idea. What on earth I would say I also have no idea about. All I know is that if they object to speed then they should have patience, or discharge me. I’m eating and effectively fairly well. There has been no fall-out either psychological or physical, there is no mental phobia about stuff – there are simple food preferences and acclimatisations. If that takes too much time for their precious medical bed then they have a simple option: discharge me. Move me to somewhere less precious and required. Don’t pressure me to meet their timings and targets: give me the correct space to grow at my own pace. And grow I will…to my body’s chosen weight gain factor, not theirs. And there is little either I or Natasha or even Dr Gordon can do about it. So I’ll stop waffling and see what today brings: Turkey and Mushroom Creole for one! Physio for two. Beyond that…? More waiting, watching, responding and potential emptiness…routines and habits that run life in hospitals…the ‘usual’, I suppose.