My 2025 Recap - a difficult but promising transitionary year

2025 has been my first year in a long while that is worth recapping! Or I’ve been able to. Major improvements to my ME/CFS, taking me back up towards where I was at the peak of my 2013 remission. With a new understanding of why that tapered off (in short, deficiencies)… But simultaneously, new challenges and self-care have soaked up most of the gains. So it’s been an ongoing scramble!

I’ve made a somewhat detailed summary, below, for those with time to read. (And let me know what you’ve been up to, too!) Otherwise, please enjoy a selection of my favourite nature pics I’ve been taking most days this year, on my return to daily walks (and later bike rides), rediscovering our neighbourhood.

Google photos album, super-cut of 30 from >500 of the best daily nature pics I've posted this year.

Health Improvements: I’ve been carefully tracking my daily health and self-treatment changes in a huge spreadsheet for several years (my memory is still shot). Since intensifying my efforts. Necessary, because there is still no NHS provision for ME/CFS treatment, here. Despite the (ongoing) pandemic more than doubling our neglected numbers; about half of those with ‘Long Covid’ meet the full criteria (including PEM - post exertional malaise, etc).

So I’ve been able to make graphs that clearly show my improvements. I shared a bunch of these with the community, in May, also posted to my (new) health blog.

Headline gains:

 ● Doubled productivity (since 2013), effectively 3x more tasks beyond cooking.

 ● 3x step count, up from 1k per day (house-bound and barely able to look after myself).

 ● Sleep anchored to a 24h cycle, no around-the clock progression for the whole year! 

 ● Weight up (to 61kg) from underweight (53kg, after my 2nd Covid infection in 2023).

 ● Various other metrics improved, eg tachycardia on standing (POTS).

 ● Milk (goats) reintroduced, finally tolerated after 12 years!

Difficult slog - It’s been very involved (following and helping) with a bewilderingly complex cutting edge protocol, and disease model, from an unconventional lone Australian researcher. Some of my (pretty unusual) struggles:

● 40+ daily supplements, some hard to source & unconventional.
● ‘Blu Tack and Sellotape’ holding my life together; one wrong micro-scoop from an open capsule has been enough to knock me way down for a whole next day. Lost many weeks.
● Ongoing exclusion diet I already had in place, cooked fresh daily, etc.
● Environmental sensitivities, that started in 2023, increased, having to FFP3 mask around the house since May.
● Stuck sleeping on parent’s sofa for 14 months now, as the only room where I don’t get unsettling sleep-bounce insomnia reactions (suddenly revering up heart rate and other processes).
● New (transitory) symptoms: finger/foot tingles (neuropathy) & plantar fasciitis. 
● Laundry, mine needs a double wash (in vinegar!) + pre-clean of the machines before.
● Mould hidden around the house, seems to be a significant trigger/cause, with no clear information on how to clean spaces previously affected by its stealthy mycotoxins.

My full "ghost busting" kit (mouldy cleaning).

Trials of life - Last winter was very stressful, including causing disruption and minor sacrifices for Mum and Dad. To accommodate my space and eg fragrance sensitivities too. Some of my extra missions from then, onwards:

● Roofing fiasco (January), getting moldy old water damaged gable end beams and (it turned out) asbestos soffits replaced.

● Internet outage for 2 weeks, concurrently, then taking months of bargaining for the ‘automatic compensation’ from (rip-off) Virgin Media.

● Universal Credit forced transition from ESA support group, nervy but went fine. I’m still basically having to spend all my income on special diet and supplements. Bank of Mum & Dad for additional testing and extra health expenses.

● Laptop shopping, to regain PC access (remotely), took over 4 months of research (all winter), 5 purchases and 4 returns. Thanks to new-found OLED screen flicker sensitivity (causing head/eye-aches, inattention, etc).

● Fridge undercounter not properly cooling, found major mould in drip-tray, triggered my need to FFP3 mask around the whole house and shut open-plan door to kitchen.

● Supporting household with more domestic chores, parents with supplements. Dad with failing memory and eyesight.

● Cat (Missy), discovered she’s hyperthyroid, after a month of vomiting. Now 2x daily med.

● Phone broke (day before black Friday sales), taking a month of 6 rapid buy-test-returns to find a replacement… Dad’s Pixel 6a got a battery fault recall simultaneously… And Mum’s Doro is on it’s last MB of memory. So all replaced. Atop other tech maintenance.

● Christmas, this year, was less upsetting (with more figured out), but weeks of clean-up were too late to avoid compromised visitor living arrangements.

Sofa is life...

Positive side:

● Outside living for the warmer middle-half of the year, summer nights under the stars/space-highway.

● Daily walks, photographing neighbourhood flowers, sharing some with online (chronic illness community) friends. Many less fortunate, eg stuck in the dark permanently.

● Bike, I didn’t entirely expect to ever use again. Great to go for a wonder to new places, nearby. Even if this was a necessary adaptation to avoid foot pain from walking.

● Became an uncle for the second time! (If at a distance.)

● Parent’s 55th wedding anniversary gathering.

● Family and even an old friend visiting, able to hang out, awake and upright!

● New young family next door is well behaved, after sadly losing our old neighbour.

A first careful venture out, always avoiding increased breathing.
Reached back of the 'new' estate, late April.

AI developments - have been interesting/overwhelming. If not quite as I envisioned, back at university pre-2008, when I hoped for my involvement in its creation:

● NotebookLM (Google app), I’ve used a lot for myself and also helped out a couple of (expert) patient groups by compiling specialised info sources together. Sadly too time-limited to do half of what I’d like.

● I used it to help me write this, quickly pulling highlights from 1.3MB of dairy entry text.

● Mainstreaming of awareness (online) of the civilizational upheavals AI is about to bring. Already embedded into all my high-school friend’s work.

● AGI (artificial general intelligence) and ASI (super) appear to be arriving well *ahead* of my expectations. But the outlook is way more bleak than I naively imagined, half a lifetime ago.

Media recaps:

● Gaming, I’ve not really had the time or hardware access to do much of. Little worth mentioning.

● YouTube and Spotify (recaps [Twitter]) have been my main entertainments, while eating/recovering and cooking, respectively..

● Netflix/Prime streaming, lots of animated shows, recommended: Pantheon S1+2 and Scavengers Reign S1 (tied for best sci-fi show), Code8 and Outside The Wire (best action movies), Black Mirror S7 (best live action, sci-fi of course), Big Mouth S8 (funniest), Frieren (magic anime with depth), Long Story Short (Bojac adult animation). All reviewed individually in my Media mega-thread from here on Twitter.