…struggling quite badly with the brain frog, which has meant that I’ve spent a lot of time in meetings apologising for the fact that I’ve totally forgotten what I was saying, usually mid-sentence. When you’re facilitating the meeting this can get quite embarrassing, but at least I was able to look at the agenda.
When I first embraced menopause and the blessed HRT patches my brain frog went into hibernation for a while, and all was right with the world. Well, I could finish whole sentences and that was nearly as good. But then it came back, along with all sorts of weird aches and pains and other fun symptoms – some of which go with menopause and others which don’t.
What they do go with, it turns out, is something called Sjogren’s Disease, and the investigations into my aches and pains led to my being diagnosed with this in May. For those of you tracking the Year From Hell (TM) May was after the break up but before the fracture, in my personal timeline.
Sjogren’s is the second most common autoimmune rheumatic disease, I’m told, but remains under recognised and under treated. It affects about 0.6% of adults in the UK, average age of 50, and 90% of us are women. I suspect there’s so much crossover in the symptoms list that sufferers assume – like me – that they’re just on the menopause merry go round and just up the HRT.
It took about two years from first seeing my GP to actual diagnosis, and the offer of treatment so far has been a steroid injection and medication which has the unfortunate side effect of irreversible blindness. I’ve declined that one, funnily enough, as some of my symptoms are still quite mild and I’m going to see how I get on and hope that they develop something else. Day to day things are usually OK as long as I’m sleeping ok – wherever that is, these days – but this week has been somewhat sleepless so the fatigue has kicked in, coupled with the steroid injection wearing off. This week I have no commutes as I’m working remotely so hopefully i can get some decent downtime.
It’s been a year, I tell you. And there’s still three months to go…
Things making me happy this week
- The Seat at the Table festival on Saturday organised by the Community Partnerships Producers and refugees and migrants living in Islington. So much joy!
- Twin cuddles from A&B on Friday
- Thing 2 making almond danishes
- The prospect of no Central Line for the week.
- Making fluffy owl babies for story time
That’s it from me…same time next week when hopefully I’ll be less grumpy and less tired.
Kirsty x
What I’ve been reading
Nine-tailed/King Foretold – Jayci Lee
What Kirsty did next 