Well, that was an unplanned nine-month radio silence, wasn’t it? If you read our September Struggles post, you’ll know life turned into a game of medical Whac-A-Mole for both of us. Today felt like the right moment to dust off the keyboard and let you know where we’re at.
James’ Update
Insomnia has sauntered back into my life like it owns the place. I’m on prescription-strength sleeping tablets every night; miss a dose and I’m wide-eyed till dawn, counting ceiling cracks instead of sheep.
March was where the wheels really began to wobble:
- Arctic-level cold intolerance – I bought a heated gilet on Amazon and basically live in it. Highly recommend if you fancy cosplaying as a human hot-water bottle.
- Swiss-cheese memory – I now keep a morning “Don’t Forget” list on my phone so I actually remember to read the “Don’t Forget” list.
- Mid-sentence vanishings – words simply… evaporate. Brilliant for party tricks, less so for work calls.
- Blurred vision & dizziness – stand up too quickly and I’m doing my best impression of a Victorian lady in need of smelling salts.
- Energy levels – powered almost entirely by sugar-free energy drinks. If Monster ever folds, so will I.
- Gallstones – the gift that keeps on giving. Still getting an attack every couple of months; the dream is to divorce my gallbladder entirely one day.
By early May the combo-deal of my own symptoms plus being full-time carer for Kirsten led to a full-blown mental breakdown complete with nightly panic attacks. Oddly, they only strike when I’m not sedated by the sleeping pills – silver linings, I suppose.
On the brighter side, my GP has been brilliant, and I’ve finally got a referral back to the bariatric team. Progress is glacial, but at least it’s moving.
Kirsten’s Update
Kirsten’s saga with Hidradenitis Suppurativa (HS) is still front-page news in our household. We did discover her mega-flare last year was turbo-charged by her birth-control implant, so that’s now gone. Symptoms eased a notch but the HS itself refuses to pack its bags.
Where we’re at now:
- Working with dermatology, gynaecology and the GP (triple-threat clinic, anyone?)
- Daily cocktail of antibiotics, topical creams, Instillagel anaesthetic and prescription painkillers
- Surgery pencilled in once a final set of biopsies comes back – fingers crossed for late summer
- Post-op plan includes a short course of immune-suppressing steroids to see if hormones were the real puppet-master all along
Because she’s been on strong pain meds for the best part of a year, we’ll need a taper-off strategy afterwards – going cold turkey is about as wise as doing press-ups straight after abdominal surgery.
Looking Ahead
So, in terms of raw progress, it doesn’t look massively different from September. But! We finally feel like we can see the finish line instead of just more hurdles.
- Kirsten’s biopsies happen in two weeks
- Surgery (all being well) soon after
- I’m trialling a new sleep-hygiene routine in tandem with the meds – wish me luck
We’ve also been quietly writing – there are 30-plus draft posts waiting in the wings. Expect a steady trickle (or maybe a flood) over the coming months. Plus, we’ve started filming for YouTube, TikTok and Instagram, so if you prefer moving pictures to my rambling prose, stay tuned.
Thanks for sticking with us, and if you’re battling your own post-sleeve roller-coaster, remember: progress sometimes looks like standing still while you load the next level. We’ll keep sharing the unfiltered reality – victories, hiccups and all.