Jacket potato, roasted Mediterranean veg, leftover bacon and mushroom, cheese / jam roly-poly and custard

Today was the long awaited / dreaded day: the day when “we’re just going to have a chat with a doctor, then we’ll come home”. AKA first appointment with a rheumatology consultant day.

After all the recent panic, mum was relatively calm, while my own anxiety started ramping up. I had to keep reminding myself to breathe, my chest got tight, and my fingers became even more fumbly, sending the lid of one of mum’s tablet bottles spinning and bouncing under a cupboard. (Mum, armed with my grabber, was thankfully able to retrieve it.)

It took me some time to pinpoint the cause of my anxiety: I was getting all the memories of all the times first my sister, then I went to doctors because something was clearly wrong with our bodies, only to be dismissed and accused of faking it / ‘it’s all in your head’. My sister eventually lost her life from complications of her condition, and I’m permanently disabled, neither of which would have happened if doctors took us seriously earlier. I felt like I was facing the same fight again, this time on mum’s behalf, and wondered how I was meant to make them listen this time.

I also wondered if that experience was making me less reasonable, more inclined to insist on mum having more tests, unable to accept that it’s dementia causing her headaches and other symptoms. I live in dread of becoming ‘one of those patients’: the ones who are always arguing, never satisfied, taking up the time of doctors who should be helping people who have real problems.

(I was once accused by a GP of exactly that and, while I have long accepted that he was simply an idiot with no patient skills, part of me still worries about doing exactly that.)

Medical gaslighting – where doctors act in such a way as to make you start to doubt whether you really are experiencing what you think you’re experiencing – is sadly a very real occurrence, and can make people who experience it reluctant to seek help for future symptoms. Or, as I feared, make people more argumentative and less pleasant for doctors to deal with.

Thankfully, I didn’t need to address any of this, as we got a Good Doctor. He listened to what mum and I had to say, asked thoughtful questions, and didn’t seem at all inclined to dismiss mum’s pain as ‘all in her head’. (Although obviously it is, in the strictest physiological sense.)

He requested an urgent blood test and facial x-ray for mum, and that’s where my ‘quick chat and then home’ narrative fell through. Luckily, we got to phlebotomy just after lunch, when the waiting area was still relatively empty, and mum only got to utter one “come on, get on with it” before they did indeed get on with it.

Then there was a short wheelchair ride across the hospital for the facial x-ray. This is part of the original, Edwardian hospital building, with its low ceilings and narrow corridors. I imagine it would be rather creepy after dark: too many blind corners for ghosts to jump out at you. (Or whatever it is that ghosts do when they want to scare someone.)

We’re now waiting for results of those tests, but the rheumatologist best guesses are currently a) thrombosis (blood clot) in the vein that crosses the top of the head (the superior sagettal sinus, if you’re taking notes), and/or b) a dental abscess causing referred pain.

What he definitely didn’t think is that the pain is a result of anxiety or of mum’s Alzheimer’s, which is a great relief all round.

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As a reward for mum’s patience, I cooked her favourite dinner: jacket potatoes with roasted Mediterranean veg and cheese. I also had the leftovers from last night’s dinner, which made for an interesting meal, but not an unpleasant one by any means. Then we had jam roly-poly with cream (for mum) and custard (for me), and now I’m about ready to go to sleep.

(My weariness is not helped by the discovery, shortly before we left for the hospital, that yesterday’s substitute cleaner had somehow mistaken the new bag of cat litter for rubbish, and thrown it in the wheelie bin outside. Dragging a 3 litre bag of wooden pellets out of a bin the height of your chest, while balancing on one crutch, is a serious physical challenge!)

The conclusion to all this is… idk. 🤷‍♂️ I’ll let you know tomorrow when I’m less tired, and less distracted by watching Suki watching the dogs on television, which is very entertaining! See you tomorrow, all.