The 17th of March. I had another less than brilliant sleep, and I'm still clearing my throat/coughing a fair bit, which is indicative of RSV (for me, anyway). RSV is the evil viral chest infection that makes it difficult to even eat because eating takes up breathing time, and the only treatment is a poisonous nebuliser (seriously, I have to be in a negative pressure cubicle which the air gets cycled through, nobody can be in the room while I have it for the two and half hours three times a day, and they put a big red sign on the door saying POISON with a skull and crossbones, no word of a lie), and that only alleviates symptoms a bit; it doesn't even treat the virus. I really hope I don't have it again.
This morning I did some blog-updating, then went to back up my phone and discovered that I've literally run out of space on my laptop, so Mommy and I spent the rest of the morning debating solutions. After she'd been out and returned from seeing Grandma (no progress with the food situation - it's back to normal i.e. good, but none of the relevant people were available to talk to today), we left for GvHD clinic early so we could stop in town for me to get the storage solution.
At clinic, I met a new doctor who's doing research into GvHD and chimerism, and seeing as I've had nearly all the forms of GvH, and chimerism is how they initially discovered that the stem cells had going on their little jolly to the bone marrow and set up there, my case is pretty pertinent to her! Thankfully nobody wanted any bloods (my bruise from last month's clinic still there) so we just went to pharmacy and then straight home.
We were supposed to have leftover pork from Sunday for tea tonight, but Oscar managed to get it off the top of the fridge (this involves jumping up onto the window seat, then up onto the work surface, across the cooker, then up to the top of the fridge) and stick his face in it! Of course he couldn't eat it because it was cut into big pieces which he can't tear apart anymore, so not only was he left without, but so were we! So we had these sausages from Heck instead and they were delicious. Not too spicy for me which is always a worry but a bonus when my mouth copes.
Oh and I am officially off steroids now! Come on, face.
The 18th of March.
Oh, it's been a frustrating day. I had approximately two hours of sleep, and have been awake since approximately half past one this morning. I have then spent my entire day staring at a computer screen, waiting for files to transfer, only to find at about half past five that it hadn't done any of it.
So I'm doing it again in a much slower and more laboured fashion this evening. It's a good thing I haven't got anything on tomorrow as I'm going to be going through the whole saga again.
Becky came over after school for more pupil chat, and she's given up chocolate for a week which if she completes, will be very impressive! She is the chocolate monster (but also works it off by being super-active).
I had a minor crying attack at Daddy this evening because he couldn't understand my current attitude to money and I just said "Well when you're terminally ill, you can lecture me about spending money I have in the present because I'm not saving for a future"! It was a little bit melodramatic. He says he doesn't think of me as being terminally ill. Well I wish I had that luxury.