Saturday 12th December 2015

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5.30am – (clock) face-off

Trigger warning: I will be talking about poo, in detail. If you would like to continue to think of me as a Barbie who doesn’t poo, then please, don’t read on!

The clock face and I have seen far too much of each other this evening.

The first time I woke up I managed to resist the temptation of sneaking a peak at it from underneath my eye-mask. It must have only been about midnight then, but already I found myself in a hot sweat; pillow soaking.

Almost unthinkingly, I flipped the pillow over and tried to get back to sleep. Perhaps I subconsciously felt I still had a chance because I’d only recently just dropped a sleeping tablet (which I shall hereby refer to as a ‘sleeping’ tablet, for obvious reasons). Syntax matters in matters such as these.

I’m updating this diary with the bone dry kind of focus you only get from steroids.

My second rude awakening was the familiar ‘you’re awake now’ mechanism that seems to suddenly trigger itself in the early hours. I feel so awake, as if I’d already got up, made a cup of tea and got on with the day. Except I’m here, frustrated, updating this diary with the bone dry kind of focus you only get from regular steroid consumption. And maybe speed, I don’t know.

To add to the fun, my intestines are grumbling too: a sure sign that action is fairly imminent. No sign of poo yet, just blood, which usually masks any sign of it anyway. Instead, I am left with a dark red soup of god knows what. The thing is though, it doesn’t even bother me anymore, that’s how long this shit-show has been the new normal.

I take a look at my poo chart and try to find something that fits the description of the carnage I’ve just left in the toilet bowl, but nothing fits. The chart is useless but I am still made to update it every day by the nurses even though nobody checks it. NHS bureaucracy at its finest.

I punted for a ‘6’ on the chart (very soft) and tried to put the pointlessness of this exercise to the back of my mind. Although not before leaving a slightly passive-aggressive comment at the bottom of the form ’12/12 0200 bloody, spray in bowl. Blood and mucous on tissue. NO VISIBLE POO’. I reflect on the pointlessness of this comment: given that no-one (apart from me) reads this, I am effectively having a go at myself.

Yesterday I felt like I saw a small improvement in my symptoms and quietly hoped that this perhaps meant that the steroids were working. I had done a number ‘4’. To the uninitiated, this means that it was a long, smooth and soft poo which ‘looks like a snake’, according to the chart. I wouldn’t say mine was long: more like the end of a snapped-off lizard’s tail (but poo, obvs).

Only a bowel disease sufferer could take pleasure in the plop of a poo in water.

This is something to celebrate. Seriously! Yes, it was coated in blood, but it had made it through the minefield of the 10-12cm of inflammation in my bowel and splashed pleasantly into the bowl. Probably only a bowel disease sufferer could take pleasure in the plop of a healthy poo in water, but there we go.

I pondered all of this for a while as I tried desperately to drop off again. I had buzzed the nurse a few minutes earlier and done my best to impress my fed-upness with the lack of sleep and how I didn’t think my ‘sleeping’ pills were helping. She was very clear that it would be difficult to get me any more to take this evening, even if she could find a doctor at this time of night, which she felt was unlikely. She said she’d try but I haven’t heard back for hours so I am writing that request off for now.

Luckily, I did eventually get back to sleep, only to be woken up again at 4am for an urgent toilet call. A bloody 6: couldn’t see poo but felt it. I looked at the bowl almost impassively; a flicker of irritation crossed my mind but this was rapidly overridden by my realisation (and annoyance) that I was again bolt upright and awake.

My water jug was empty so I buzzed the nurse for some more. “You still can’t sleep?” she said matter-of-factly. “Noooo,” I replied, not fully appreciating the obviousness of her question (I was sat upright with the reading light on, scribbling away in this diary.

I suppose it was a smart move: calling her in to find me awake. Hopefully it will give me more ammunition tomorrow to get hold of some more sleeping pills when I see the doctor on his rounds.

A weird taste or smell comes – bitter almost – as they inject the liquid steroid.

It doesn’t help the sleeping situation that my cannula site (now on my left hand) is quite sore. It feels hot and a bit throbby, and as I lie awake in bed I worry about the pain I’ve started to get when they flush it (pass saline solution through the cannula into the vein). A weird taste or smell comes – bitter almost – as they inject the liquid steroid. I wonder if the nurse can smell it too? I may ask them today, just out of curiosity.

And that pretty much sums up my morning so far: lousy. I feel lucky though to have had such an uplifting visit from T last night. She brought me a hot mince pie and brandy butter, a flask of strong earl grey tea and a bag of Christmas decorations (gold and red tinsel and reindeer fairy lights).

She twisted the tinsel around the arm of my ‘entertainment’ unit (overpriced, shite TV and films) and stuck the fairy lights to the side of my window. Little touches make all the difference in here. After she had wolfed down her jalfrezi and naan (so jealous) from a little Tupperware tub, we cwtched (a better, South Wales version of cuddling) and watched the telly for a while.

I had a little cry when she first got there about how tired, run down and puffy I felt, but she gave me a much-needed cuddle and I immediately felt better. Throughout her visit I felt quite fuggy (limbs heavy and swollen; joints clicking and creaking) and a little guilty for not being better company, but I’m sure she’ll tell me off just for thinking that.

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