The 28th of August.
I woke up at about ten to three, really angry because I’d had a dream that someone nominated me for the ice bucket challenge (it would be categorically stupid, by the way) and I’ve been pretty much wide awake ever since.
More Photopheresis this morning, then went into town afterwards where I got a blanket-y type shawl thing and two jewellery trees from M&S as the only one I have is too full and all my necklaces are getting tangled.
This afternoon, Grandma went back to hospital because her leg swelled up again which wasn’t supposed to happen, so Mommy went with her and I tried to make friends with Hamilton but he but me again. I think we’re just going to have to be go back to Pets at Home and just find out what happened with his previous owners, like if they had grabby grabby children.
I have been so tired today – the kind of mood where I just want to eat all the things. Oh and a physio came to see me during Photopheresis this morning to talk about combatting the muscles wastage but we are basically doing everything we can do – squats, deep as possible, little and often. And we now have the wonderfully humiliating addition to our bathroom – it’s a frame to fit around the toilet so I can get off it more easily.
I’m basically 90 years old.
The 29th of August.
Lorazepam day. So I didn’t get up until which was ever so yummy. I had nowhere to be, nothing to do, no brain function necessary.
Grandma’s scan revealed that she has a clot on her lung, so she’s got to go back every day? She has to have Warfarin and avoid green vegetables (which I was craving and ate an entire box of M&S’ triple layer courgette thing).
This afternoon we spoke to the Pets at Home lady and she gave us some advice regarding blankets-as-transportation so Hamilton has been out in his ball for a good two hours tonight! Plus I sprayed the bars with yucky-tasting stuff so hopefully he will be put off chewing them quite so much. We will become friends, in time. I must just dig out my patience (it’s very deep, and I don’t have a lot of it).
Today we have gone down to 25mg of pred. Slowly but surely. I hope coming off it also helps with the fluid retention because my feet fucking hurt.
Every so often, I keep hearing Hamilton bash into something. Thankfully, the ball is secure. He is daft.