Lunch: chicken mayo roll, chocolate pudding and chocolate sauce; dinner: fish, chips and peas

I will keep this short as it’s late and I’m tired. Today I went to the hospital for what I thought was going to be a quick update meeting with the neurology consultant. I was quietly dreading it as, last time we met, she made me cry, but this time she was very positive, commenting on how well I looked and that I was walking – with crutches, but walking – which she at one point didn’t think was possible.

Then she introduced the real reason for the appointment: for us both to sign off on yet another blood test, this one to be sent off to the Rare Genetic Disorders something-or-other, where they will try to finally identify the rare condition that has upended my life.

The consultant warned that results take “hundreds of years”, so it might be a while before I hear back, but I might finally get a name and prognosis for my condition. Or I’ll be told it’s not genetic after all, and we’ll have to start the whole diagnostic process again.

She also firmly instructed me to be careful not to do too much, which is the opposite of what she told me last time, when she publicly shamed me for not being as active as she thought I should be, despite me being only a couple of weeks out of hospital where I had, at the start, been unable to move from the waist down under my own power. That criticism has played on my mind every time I try to pace myself, a small internal voice shouting “this is what got you in trouble last time!”, and hopefully I can now stop thinking about that and listen to my body, as far as is possible when caring for someone else, anyway.

Consultation over and blood drawn, I walked a distance that felt the equivalent of the London Marathon to get some lunch. Those who remember my posts on Rate My Hospital Plate may recall my fondness for Graces Bakery chicken mayo rolls, and will be unsurprised that that’s what I grabbed from the fridge. Then I got a portion of chocolate sponge pudding with chocolate sauce, which the person serving very kindly carried to a table for me when I realised that crutches aren’t compatible with carrying a china bowl of steaming hot chocolatey goodness!

As this is already longer than I intended, I will sum up the rest of my afternoon as: got a taxi home, did the usual caring stuff (“that’s junk mail, put it in the recycling; of course you can go out with a friend on Thursday, you don’t need to ask permission; it’s Tuesday today so church will be in [counts fingers] five days; I’m sure the lock on the back door isn’t really stuck; oh, you’re right, it really IS stuck, let me get the WD40…”)

Then I cooked fish and chips (yes, I know it’s not Friday, but mum found the fish and asked to have it for dinner, and I was happy to oblige); mum ate all the chips and half the fish, then said she’d had enough to eat only to reach for the coffee ice cream instead. I’m going to have to do something about mum’s eating habits, as getting proper food into her is an increasing challenge, but it’s a challenge for another day.

And there I will end as I have to be out again tomorrow morning, and the night ahead just doesn’t feel like it’s going to be long enough. 🥱