Cheese and leek plait, chips, salad

A bad pain day for mum today: she got up, then gave up and went back to bed, several times over, the only relief from the pain coming when she was asleep. It wasn’t just her head, but her elbow, knee, and mouth are all now causing her pain too. She has even lost her (steroid-boosted) appetite.

I’m wondering if the steroids need to be increased again, but I’m reluctant to do that without proper medical support. I called the specialist department at the hospital, but their response time has increased from five working days to “five to seven working days”. Tomorrow I will try the GP, but I suspect they’ll say they can’t / won’t help without input from the consultant.

In the meantime, poor mum will just have to continue to suffer, which triggers all sorts of paranoid thoughts. I haven’t had any repeat of the “are they going to kill me?” darkness, but several times she has said “you won’t let them hurt me, will you?” which is almost as hard to deal with.

It’s at times like this I feel most isolated, with no-one to bounce my thoughts and worries off. It’s exhausting and traumatising trying to manage the complex medical affairs of someone who no longer really understands what’s happening. I wish I could show the doctors mum’s pain and fear, and how they’re restricting her life (and mine as well), to persuade them that leaving things unresolved simply isn’t an option.

While mum slept, I arranged for a handyman to come round tomorrow and do a few little jobs in the house and garden, although the garden bit might have to wait as the weather forecast is not promising!

For dinner I did a simple freezer to oven meal. Mum ate her chips and salad, but left most of the plait. She even limited her sweet intake to a single bowl of tiramisu. Given that she hasn’t eaten much for the rest of the day, that isn’t a good thing.

So that was today. Hopefully tomorrow will be better.