Abridged narrative of my life, failed studies and ill health symptoms

In honour of hitting the big four-oh, overnight, I felt like turning this excessively long reddit comment reply of mine into an impromptu blog post. Maybe it could kick off writing up more health history, for useful proposes...

I hit all the normal infant development milestones. But was a late starter in some academic respects; last in class to move from pencil to pen, at the start of middle school. But by the end I was getting top grades and passed the entrance exam for our selective grammar (high) school. Where I was basically on mostly As until age 16, except for chemistry and languages (dyslexia spoiler warning).

Starting secondary school.

Over the two years of sixth form, I really started struggling with DSPD (delayed sleep phase). To get to school on time, be exhausted when getting home and then still not sleeping until late. Also with executive function to do homework and revise maths, in particular. The first casualty of my abstraction limit and/or cognitive dysfunction. I dropped Further Maths down to a half A-level and ultimately scraped a D grade. B on the main math course, physics and computing, missing out on my conditional offer of a place at Oxford. Which I didn't really regret, to be honest, heh.

Physics at university was a 3 year slow burning disaster. I missed whole weeks of lectures to now non-24-hour circadian rhythm, struggled just to scribble down the reams of equations from many lectures and could just never think well enough to catch up with almost any of it at home. The abstractness of the maths just snowballed, until I got zeros on two final year exams! I nearly dropped out 2 weeks from completion, but was persuaded to finish. I ended up with a pass, technically, with benefit of the doubt from a last minute provisional dyslexia diagnosis. Although there was a mix up and I missed my graduation.

In 3rd year Nottingham house. Perhaps my most lonely period.

Retrospectively, I should have called time on those degree studies after the first year. I was massively unrealistic, imagining I could turn things around, for no reason. I always got a bunch of encouragement from my mum, saying I'm smart. Encouragement, not harsh pressure, which I feel very lucky for.

Anyway, after a year out, working in a warehouse and doing electronics repair, I went back to study Cybernetics. Basically Systems Engineering: computing, electronics, control, mechanical engineering, etc. I'd done alright with the more applied stuff, previously. And this was the course I'd found more interesting but set aside to be more ambitious, with physics.

The maths was still a bit of a struggle, but back closer to high school level and I'd had enough practice by then, lol! I was on a 1st (over 70% average) at the end of my second year. Extra exam time for dyslexia helped. But course work kept slipping into more extensions. Submitting extenuating circumstances forms as I pursued medical investigations for my growing "Illness CV" of symptoms. Slow going via the NHS.

Kinda doing well at Reading Uni for a while...

I dropped down from a 4 to 3 year course. Then 3rd year part time. The suspended studies, because I didn't see any point finishing for the sake of it. I'd have just dragged my marks down towards minimal levels again. I never recovered enough to go back; the university axed the entire department a few years later (despite its national uniqueness).

I was strung along by doctors for a few years, on a 'working diagnosis' of depression. But SSRIs were useless, Mirtazapine gave me 20h long hypersomnia and the last psychiatrist gave me the boot. Ironically, just after a my first promising drug response: a week or so of major upturn on the starting dose of Bupropion (acting on NDRI - noradrenaline and dopamine).

Just after my 30th birthday, I finally got a diagnosis of ADHD-PI (predominantly inattentive). After figuring it out myself and pursuing it through a private professional. At the same time, I had discovered I had histamine and other food intolerances. Having acquired IBS-D, out of nowhere, and quickly controlled it with dietary exclusions. Starting with a the basic GF-CF and progressing to more specifics through dairying and private IgG blood testing. See my Health Revolution - Part 1 blog post (spoiler: there was no part 2).

Meetup with friends while in London for a blood draw (drinking only water).

This gave me a 9 month long extremely hopeful remission from the daily fatigue, etc. During which I focused on my health, with supplements, diet, light exercise and extensive testing via a nutritionist. I even 'fixed' my non-24 sleep for a few months! But I just couldn't progress further or even make it last.

As it slipped away again, I found my symptoms had moved around to look much more typical of ME/CFS. Right down to my blood serum amino acid levels being reflected in exciting new metabolomics studies and theory, that seemed poised to revolutionise this massively under funded, misunderstood and misdiagnosed disease...

Today, as I've just turned 40, my ME/CFS stifles my options and abilities more than ever. A slow decline. I can just about look after myself and get a little satisfaction from involvement in creative PC game communities. After having largely failed to sustain being a YouTuber a few times, too.

In the last 10 years I've acquired osteoporosis. I apparently have the bone density of a feeble 80 year old, despite no good to strong levels of the usual hormone suspects and both the NHS experts I could eventually access basically throwing up their hands. 

Within the last year, I've also acquired worrying new neck issues, that feel like they might be something like the onset of CCI (cranio-cervical instability). These very serious upper spine/base of brain issues have been increasingly uncovered in the ME and Long Covid communities, in recent years. I seem to have mitigated this symptom by removal of an unexpected culprit supplement. But am struggling, as always, for consistent results. And have also been intermittently experiencing internal sensations (deep tingle/vibration/turbulent flow) within my legs, and arms less so. Another known idiosyncratic ME symptom. 

Porridge breakfast and supplement water out in rare winter sun, last week.

Last year, I did a tiny reddit poll study via r/ADHDandCFS. The results seemed to show that we neurodivergents have a higher chance to slide into this disease state gradually. As I apparently did, over many years. Compared to the more common (though not as ubiquitous as I thought) sudden onset after infection(s) and/or acute trauma. From talk in the online community, that includes autism too. And there's strong links to connective tissue issues, too, like EDS (Ehlers-Danlos Syndrome).

Finally, I've been casually watching videos, plus interacting with social media content (and game community contacts) about autism. I've had no brutally impactful issues related to this. At least, less obviously so than a couple officially diagnosed real life friends, and very many peers and online friends and contacts in which it's obvious; engineering and gaming communities super-concentrate neurodivergants, it seems. But I keep seeing more and more points of fit with my experiences (from sensory issues to social anxieties to semi-demi-sexuality, etc).  So I'm at the point where I'm just about comfortable describing myself as AuDHD. And I guess gifted too. Or once gifted...