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Documenting not dying since October 2013.

The 17th & 18th; Four years of hard work and photopheresis completely undone.

The 17th & 18th; Four years of hard work and photopheresis completely undone.


The 17th of July.

I think 40mg is enough. My hands seem calmer tonight. It still hurts to dry my hands after I wash them but when I don't touch them for long enough, I can tell that they're less angry.

I slept fairly well as I took a Zopiclone, but still got up at eight. This morning I've been emailing Dan from the Sutton Observer about a piece for next week, and looking at my notes from BCH. They're not organised chronologically, more like different kinds of information are clumped together, like emails about my liver transplant, physiotherapy notes, drug charts, so I'm learning things in a very disordered manner.

This afternoon I thought I would have a go at a little workout to see what I can do before Danny comes for our final session tomorrow. I cut out some things completely, like kettlebell swings and press-ups, but for the most part, I think I coped quite well.

I watched the first episode of the new series of Utopia, need to watch the second ASAP! Tomorrow morning, I think.

I hope Francesca emails me back tomorrow.

Oh and I got a letter from Mrs. Wager from Handsworth - she says they'd like to have me speak to the girls about bone marrow/organ donation which I will definitely be taking her up on!

The 18th of July.

Oh the heat has been oppressive today. I've been awake since about half past three with the rain and steroids so it hasn't been the most comfortable of days.

I spent my morning watching the last three episodes of Hannibal which were all suitably disturbing, then I saw the last bit of This Morning, which I'm glad I didn't watch all of as Marvin and Rochelle are terrible at presenting and watching them makes me cringe.

Danny was a bit late due to traffic but that was fine, I had nowhere to be. It meant I did only have my lunch at three though which was many hours after breakfast! It was our last session so we did my measurements which I need him to send me, but I know my waist is definitely smaller because of my jeans. I was quite glad to spend some of the session not actually exercising as it was just so hot.

After he left, I got out of my delightfully sweaty clothes and went round the corner to Costa for a coffee cooler, but I had to come straight back because being outside in the stillness and heat was horrible.

So I have spent the evening inside, avoiding the sunshine and trying not to stare at my hands. I am not sure that 40mg is enough. This amount of pred is such a setback - four years of hard work and photopheresis completely undone. What a waste.

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The 19th & 20th; Everything feels wrong and I'm scared.

The 15th & 16th; I have to remember that I am more than just my body.

The 15th & 16th; I have to remember that I am more than just my body.