Cheesy jacket potato with roasted Mediterranean veg; blueberry brownie and ice cream

It’s been a difficult day today.

Mum woke me up early to let me know she felt too unwell to go to church. Most of the morning was spent listening to her complaining on and on and on, interspersed with repeated requests for reassurance that doctors would try to help her, until my patience snapped and I responded “no, mum, they’re just going to leave you to suffer”.

It took her a moment to realise I hadn’t given the expected reassurance, and another to realise that my answer wasn’t 100% truthful. Then mum laughed, and then the complaining and reassurance seeking started again.

I have been feeling quite down today, fed up with limbs that don’t obey me, and the constant twitching and discomfort of muscles and nerves that don’t function correctly. Everything takes more effort and leaves me more exhausted than would have been the case pre-disability, and many of my hobbies and interests are now out of reach.

Every now and again I mention some version of this to mum, and get “poor you. Have I told you my head hurts?”

And so the day dragged along, to the point that I’m genuinely amazed it’s still Sunday. I couldn’t really be bothered to cook dinner so just did jacket potatoes and some Mediterranean veg from the freezer, safe in the knowledge that it’s something mum will eat every time.

Then I remembered that I had some very sour blueberries in the fridge that I needed to use before they turned to mush: I had intended to make a crumble cake, but it just didn’t happen. Instead I grabbed a bag of brownie mix from the cupboard and threw half the blueberries in with it once it was all mixed. Unfortunately the dish I chose was ceramic and very deep so it took an age to cook – an hour into cooking it was still wobbling like poorly-set jelly (or raw brownie mix – but when it finally cooked it was very tasty with some vanilla ice cream.

Now it’s verging on time to retreat to my room, read, and eat (more) chocolate, then tomorrow I can wake up and do it all again. I will also be following up with the care agency to discuss when we can begin the sitting service, before I lose my temper completely and say something I regret. Even if that’s “it’s my chocolate brownie and you can’t have it”.