Roasted Mediterranean veg and feta with smoky roasted butternut squash couscous
Today has been largely peaceful, as mum was having a very down day and wouldn’t get out of bed until mid afternoon. So, while mum watches Michael McIntyre’s programme, which I despise – I spent too much of my life being bullied to find even the smallest amount of humour in making unsuspecting people the butt of a joke – I have time to write…
Oh, who am I kidding? I wrote this earlier, while mum slept.
I’ve been saying for as long as this blog has been running (nearly 9 months, if you can believe it, and the same if you can’t)1 that I would write about how I ended up where I am, and never have. But now I’ve finally got
here we go:
I’ve never been the active type, and have long-term mental health issues, so when I started to struggle with getting up and going out, I didn’t think “wtf?” so much as “here we go again”.
But it got worse, so that getting out of bed or up off the sofa became a physical effort. I spoke to doctors and they said I was depressed, and to therapists who talked about the lethargy spiral and how I needed to do more to feel like doing more.
And I tried, I really did. I made myself walk round the block to get to the shops, take the stairs at work even if I was carrying something, go for walks on my lunch break.
But it got worse instead of better: I had to stop to “check my phone” several times even on short walks, if I crouched down or knelt on the floor I struggled to get up again, and my arms started to join in the mutiny. Everything hurt, all the time. And then on day my legs just gave up: on the way to the shops one evening after work they collapsed under me, and only the presence of a neighbour’s low wall saved me from ending up on the floor.
So I went back to the GP, who referred me to the neurology team at the local NHS trust. They put me at the end of their 18 month waiting list, subject to an MRI scan of my brain.
I turned up at the hospital to find the main entrance closed for building work2 and the alternate entrance was on the other side of the hospital, up a path that looked to me like it went up a mountain.
I tried, I really did, but I made it less than a third of the required distance before I had to be rescued by two kind strangers from where I was clinging to a fence and sobbing with pain and exhaustion after walking less than fifty yards up a fairly gentle slope. My rescuers bundled me in through a side door, marked ‘staff only’, and used the phone on an un-staffed reception desk to call every number they could see until someone finally answered. [I made a complaint about the situation but never got a response. 🙄]
The MRI showed nothing out of the ordinary, and I was advised to try to lose weight and do more exercise. And I tried, I really did. I looked up leg strengthening exercises and did them every day, no matter how much it hurt, and made myself walk even though I now had to use a stick to hold me up.
I spoke to the GP again, who told me there was no sign there was anything wrong with me and to stop wasting his time. (Really. Verbatim: “stop taking up appointments needed by people with real problems”.)
I changed to a different GP practice after that. They told me it was B12 deficiency, put me on supplements, and said I would start feeling better very soon. I didn’t.
I moved in with mum as I clearly couldn’t live alone, and I got worse. I was in pain all the time, I struggled to stand up from sitting so that I had to crawl from room to room, several times I got stuck on the loo as I couldn’t get up again after using it.
Finally, just over a year ago now, my legs gave way, I fell to the floor, and I had no strength to move or get up. Over mum’s objections I called an ambulance, which took me off to hospital. The first doctor I saw told me it was conversion disorder – the technical term for “it’s all in your head, you just need to try harder”3 – the second said it was folic acid deficiency, the third said “maybe an autoimmune condition?”
It took a couple of months, many, many tests, and the input of a seemingly dismissive neurologist (she said “it seems pretty minor, you’ll get over it”, and only told me many months later that she didn’t want to scare me and actually thought I’d never walk again) to come to the current vague diagnosis of a rare genetic disorder, name tbc.
So there we are: my story.
Mum is now up and about, and in full apology mode, where she says sorry for everything she’s done, or might do, and then apologises for apologising, and so on until I want to scream. Which shows in my tone, so mum apologises for annoying me🫩
Dinner was various veg, chopped up and roasted simply, with just a bit of oil and seasoning, then some cubes of feta added for the last ten minutes. I had some smoky couscous from Tesco with mine, and thought it was really nice. Mum refused to even try it, as it has butternut squash in it.
So there we go. I hope you found it interesting: if not, I’ll be back to my usual general purpose rambling tomorrow.
Is it pineapple sponge today? 