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Documenting not dying since October 2013.

The 9th & 10th; My eyes explode.

The 9th & 10th; My eyes explode.

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The 9th of May. Second catch up sleep completed. I reckon I probably have one left before I am back to normal, but that won't be tonight because I have to get up at six for ridiculously early lung function tests tomorrow.

I wrote up a blog post this morning, but I haven't sorted out the photos and stuff so it is yet to be published. I was upstairs getting dressed when I got a text from Mommy warning me of the imminent presence of the window cleaner (she had just gone out so saw him further down the road) so I dove behind the bed to protect my dignity. Turned out that wasn't necessary because he didn't appear for another forty five minutes.

After lunch, I went with Mommy to pick up Grandma from lunch club at church, then after dropping her off at home, we went to the QE for my follow up with Mr. Kolli. He had a look at my lashes which look good, although the right eye will need to be checked again in a couple of months. He also checked my pressures which had gone up to 25/26 which is bad. Have to start doing steroid drops once a day and in a month he'll check them again. Hopefully I continue to be asymptomatic, I can stop the steroids and my pressures go down. If that doesn't happen, I'm not sure what the plan will be. My eyes explode.

The 10th of May.

Well I definitely did not have a great sleep because just as I was dropping off, I heard a dripping sound. The rain was coming through my ceiling. I had to go and wake up my parents, who did what they could (at midnight) to stem the flow. Thankfully the rain stopped and has stayed away, but it'll still need fixing because it's very near my head.

Then I was up at six for my lung function tests. We arrived at hospital at eight, and I saw the same girl as I did in November, and I had to get in the box again. I think my lungs have got to a level of shitness that requires a specific test that can only be done in the box. I was in there for nearly an hour because I had to do two of the tests three or four times, plus she is nice so we were chatting.

I then sat and read my book for an hour and a half while Dr. Thompson saw the patient before me (for ages). When it was finally my turn, I was in there for about ten minutes? My results are the same as six months ago, so that's fine. We talked about him putting the kibosh on my second liver transplant and everyone saying I would die, but five years later here I am, no second transplant, no more superbugs. He was glad I am not suing them for emotional distress. As if I care; I am just glad to be here. He couldn't believe it was 2013. Here I am, still defying the odds. Having conversations about how long my 23% will keep going for. We don't know.

The 11th & 12th; Fucking discs.

The 11th & 12th; Fucking discs.

The 3rd, (4th/5th/6th) 7th & 8th; Beyond tired.

The 3rd, (4th/5th/6th) 7th & 8th; Beyond tired.