I’m a little confused and dazed this morning and not quite able to ‘see straight.’ I think this is due to a combination of factors: the first of which is simply that I slept a little more soundly and the increase seems to have served only to disorientate me further. Still dozing even now at 7:30am as opposed to being already wide awake for hours. I must have needed so much rest, its ridiculous how tired I was yesterday. Even though I was up from just gone 4am I didn’t go to sleep until gone 11pm and there was so much invested in yesterday energetically:
The morning was caught up with attempts to discover information from dieticians and being incredibly distressed about this tube’s position. It is a source of great anxiety to me that it keeps pulling, its distracting, its off-putting and it consumes so much of my attention that it makes me pre-occupied and almost unable to carry out a sensible conversation. In stressing to the dietician it was a morning where nothing worked seamlessly: my shower was delayed, my physiotherapy appointment was also late, I saw no doctors and no diet plan had emerged from St George’s. It stressfully took far too long to get anyone to come and pay enough attention to flush this tube once feed had finished and it was incredibly difficult to say anything because the nurses on duty were the ones who had been on the day before and of whom I had asked for the new tube. In my reluctance to stir up any ill feeling I spent a lot of the day conflicted, not really knowing how to be around them. Jane’s main assertion later in the day when it finally came up as she was restarting my feed at 5pm was that it was in the right place. Her anxiety over putting it in had been vindicated by my X-Ray and as far as she was concerned that was the end of the story. I had little fight yesterday against her, even with Mum’s support there is a stubbornness about some nurses where you get the sense you could talk all day and receive no softening, even if understanding does emerge – which I had felt it may have done with Jane the previous day.
Nevertheless, their pre-occupation with other people combined with my prolonged absence from the ward to create a day where nothing really was said between us. I spent almost an hour having a long and strenuous but ultimately incredibly rewarding physiotherapy session. I walked down there and back, spent a long time just having a kick about and attempting to run, increasing the stability I have in my knees and hopefully improving both balance and saving capacity. The stairs and the trampette are much improved and the job now is to attempt to be without assistance from either Jane or my arms through the mobility and strengthen the calf and quad muscles enough to take my own weight.
The pain that is in my legs as I walk or even do the simplest of activities is not understood by many people. Even Jane did not realise that simplistic walking carries as much pain (and sometimes more) than more adventurous, stretching exercise. However, it has become clear that Jane is comfortable now to take me down to the gym alone and I have another session booked with her today, although I do not know what time.
And then after lunch I went out to buy my glasses yesterday. A disconcerting fitting turned out well when finally the professional came to help and ensured that I was comfortable, which I finally was. The drive home illuminated how tired both my eyes and myself were. I couldn’t keep my (newly focused) eyes open and kept having to shut them, almost dozing off. We returned to the hospital at around 4pm and began asking questions – after which it transpired nothing was done. After a stilted, disjointed hour between asking/not asking, debates between myself and Mum, difficult communications and uncertainties on my behalf as to how much to push around this tube we had at least expressed my discomfort to both Jane and the doctors. They had also seen my glasses and we went downstairs for a coffee with feed restarted and a promise that if I still felt in discomfort tomorrow then the tube would be replaced.
My immediate sickness after restarting the feed then turned into a bit of a nightmare where I required suppositories to shift some incredibly compacted bowel matter. The pain was excruciating, with blood clearly visible but most importantly Mum had asked to leave early and was still here at gone 7pm being supportive. Whilst we spent the time productively and discussed our future, putting feelers towards tomorrows etc. and setting some ideas out to make myself a little more aware of where I was heading and therefore a little more comfortable with the onward progression (despite its overwhelming uncertainty at the moment).
But all of this energy expenditure left me feeling vulnerable. Yesterday evening was spent conflictedly trying to find ground, writing to Mum, assessing what had progressed that day through a long communication with her where it became obvious that the importance in my life has been practicing how, when and to whom to express. These blogs have been experimentations within that job and I am reaching some sort of settled-ness where it is becoming more pronounced to me quite where each individual genre of topic fits when I come to externalising.
And then it took an eternity to get anything (like MST tablet and wound redressed). I watched some of The Interpreter (another film ordered from my DVD company) at about 9:30pm and read simultaneously in an attempt to switch off. By 10:20pm I’d closed things down and spoke to Mum very briefly but was falling asleep whilst doing so and so we ended our conversation (during which I’d wanted to discuss my writings to her) without saying much but goodnight.
My night was disturbed, I read two magazines on the toilet (commode) at one point. My bulb had gone and it is illegal for the nurses to replace them, there was no staff on duty who could and the clinical matron had intimated that they had better things to do (quite rightly). I threatened to steal someone else’s and change it myself but was informed that there was ‘protocol’ to follow. Priscilla did, however, eventual recognise that this would keep me sane and silent and found a bulb, screwed it in and I had light for the night. So I could see to read and was awake for chunks of the night – particularly at 3am where I watched the rain and was tempted to go online and look up some addresses which I had seen in the magazines. I didn’t, however, and was awakened fully at 6:20am for obs to be checked. Drifting in and out since then it was at 7:30am when finally I was awake and recognised my disconcertedness.
A text message from Mum was what I needed – I had to talk to someone this morning and ascertain what to do with regards this tube, the day – this day has importance for me because I would like to know that things are in place. But then something has just occurred to me. And it hasn’t been relevant until now. Although I do not know precisely what relationship food should have to feed, I do not know what timings should be and whether food consumption should be all together or scattered throughout the day, even now. I do not know how many calories I should be consuming on top of what I am eating but I do know the basic ‘two biscuit’ snack which begins this process.
So lets begin. Perhaps waiting for a full plan is now irrelevant. I may just as well start it off myself, slowly easing my way into doing what I know is going to be at least nearly their first recommendation, if not actually it. And there is a lot of security found from waiting until I have the professionals’ opinion but then there is my own strength and authority which largely ignores that and moves on. I’ve been eating all along anyway, I’ll now just eat two biscuits during a day and then I’ll be able to move on quicker. And it doesn’t matter how or when or where I consume them – a day of nibbling I sense…and then that’s step one achieved.
It did occur to me that St George’s may recommend upping the feed. To which I don’t know how I’d react. I really don’t want any more calories this way, I would like for feed to be going in the other direction. So the sooner I begin the sooner the scales tip the other way.
And there is a pile of papers here on my table. I always read in order: saving the most special ones, the ones dearest and nearest to my heart until I have read everything else. Last night’s loo reading cleared two dross magazines, there is a catalogue which I will finish today and a Waitrose Food Illustrated which is part-read and only semi-interesting. But then, lurking somewhere is Livingetc. And Conde Nast Traveller – my two most ‘special’ mags. And my progress towards them has been halted by practically not being there to read them, not being able to move beyond recipe hunting online (something distracting when trying to find both hospital-appropriate “meals” and quick and easy dinners for Mum to cook when she leaves me late. The distraction for that is now over, though. Mum will never be inspired by food until I am out to both cook it for her and enjoy it with her (genuinely, that thought does not fill me with anxiety any longer). I cannot see what to have cooked for me and brought in until I know the progression and so the hours I have spent distracted seem a little wasted to my head now…
…anyway, they were probably all necessary to demonstrate just how far I have moved on from my absolute nutritional paranoia. More than that, it was looking at them which demonstrated the potential within me to be able to eat – something which I had even doubted myself after the long and arduous nightmares around food I have been on. The funny thing is that what I am being drawn towards currently are simpler than gourmet recipes. Although the aubergine, tomato and gruyere gratin still favours highly, the half a tuna/mayo with cucumber slices on brown bread was far more attractive last night in my contemplations than anything fancy. And so it proves further to me that I am drawn towards what it is that I need currently – and need can come from accessibility as well as desire. Need has a little more reality contained within it than simplistic desire. Need is what comes from wanting everything: it is the end result, the final manifestation and what is actually presented to you is what you need – regardless of how much you can dream…
…but the time is now able to be freed up to more relevant research. I am looking for a mini Digital Camcorder to record experiences (although that may only become relevant once I am outside). I am also looking towards reading these precious magazines and allow the Conde Nast Traveller to inspire me around the location of my next home whilst the Livingetc. Shows me how I want it to look (and perhaps gives me bathroom design advice initially…) and perhaps both may surprise me and hold information more relevant to my future than any recipe website that I can find online.
And so it is time I started dreaming about what actually matters. I no longer need to dream about being able to eat, being OK with food or about food being an everyday thing within my life. It is, I can, I am and everything is there for the taking nutritionally – I can stop thinking about it so heavily with my dreamtime. Moving onwards to devoting dreamtime elsewhere it is my traveller magazine which is attracting me. Perhaps it will show me the way…to my piece of heaven on earth? Always…
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