Taking The Heat...

This heatwave’s heat has been DAYS & DAYS of Beyond utterly, completely, incomprehensibly and excruciatingly UNBEARABLE.

As someone who is entirely Room-Bound — and, for all intents and purposes, technically & basically Bedbound — this is an Entirely New Hell to contend with; one that I’d never thought I’d need to endure here, in Eryri [formally named Snowdonia].

North Wales is renowned for being murky, drizzly or rainy, and generally chilly and grey. Occasionally the sun comes out, briefly confusing the locals, before it vanishes again.

These New Heatwaves are… Unimaginably Insane.

They are also Unimaginably Cruel, Debasing, Imprisoning, Controlling & Creating A New Vulnerability That Has No Answer To It [yet?]… Whilst stripping away Autonomy like it’s just some vague perk you don’t really need.

I literally haven’t been able to move, at all. Went from “I can hardly or barely move, and that WRECKS everything inside of me to manage it” to “if I move I will DIE” Levels Of EXTRAORDINARY Exhaustion, Pain, Agony (yes, they’re Very Different Things), Immovable Stiffness, Severe Dizziness, Nausea…

This was the Very First Queen’s Club Tennis Tournament I’d missed since I’d started watching from when I was about 10 years old (possibly even younger, but definitely by 10)… [And That’s Quite A LOT of… Ahem. Um, Decades … of it…] BUT Anyway(!) — The Worst Part of That was… I Didn’t Even Care. Even missing a few hours of it, when I was at work, or somehow forgot it was on from early, I’d climbing the walls from Dragons of Disappointment and searching frantically for the remote. Yet, I missed the First Women’s Tournament At Queens (wouldn’t the Other Me have been Beside Herself watching That), and a wide-open Men’s Tournament without it’s New King.

My Room has been constantly hovering around 35⁰C [±1-2⁰C] for DAYS & DAYS... With no less than Seven different kinds of fans in here. About half of them screaming hell-for-leather directly into my face — at full-power. I’d hate to think what it’d be like if I turned them all off…

And that is where I am trapped. Where I remain. This is where I am… Whilst every one else goes outside for cool air, to the beach, on a nice day out to the park or forests (if they’re smart enough!), have BBQs — or going to someone else who’s having one, sitting in a pub garden drinking ice-cold Pimm’s & Lemonade… or just lying on your lounger/grass in your garden.

The effect it has had all over my body, on so many of my Medical Conditions and Illnesses, is atrocious.

I am Disabled with FND, Fibromyalgia, and probably one or two other things that haven’t yet been diagnosed. The Symptoms are OUT THE PARK OTT because of This Damned Weather — the sharply fluctuating air pressure millibars, the ABOMINABLE Heat, the Intense Humidity — and the very worst of it has frankly gone from Catastrophic to Diabolical. It’s Beyond Crippling.

Functional Seizure BlackOuts and ZoneOuts are even WORSE — and I’ve spent many of the worst days entirely Unconscious & Unrousable,

struggling to come-to, to even take my meds, let alone drink anything, and I was barely able to eat a single thing at all over many days, either. Often I would be only roused just long enough to manage the meds and then simply Blacking Out for one or two hours again.

Severe Paresthesia, Mega-Hyper-Beyond-Everything Levels of Exhaustion, Body-Wide Spasms with sharp Twitches and Deep Tremors — both body wide and in just t , Absolute Stiffness Of Joints & Intense Eyewatering Joint Pain, all making me feel like I was made out of sheer concrete and marble whilst trying to walk through extremely custard and oatmeal.

There were also Severe Headaches and Overwhelming Dizziness, Visual Disturbances, terrible Nausea, and surreal Derealization… To name but a few. It escalates and exacerbates Everything for as long as it is here.

I have Von Willebrand’s Disease, Type 1. That usually means that it generally buzzes around contentedly beneath my skin, quite happy to remain around 99% asymptomatic. Mine is a strange one though, because where I’ve been told that stress usually gets the clotting to speed up… Mine Just Absolutely Falls Apart. Bleeding noses, gums, and capillaries — even in my eyes — will pop up out of nowhere when I have even Medium Stress and Anxiety — and with a force harsh enough to believe I’d been popping Aspirin like Skittles Sweets. It’s possible to get so bad, I can look like I’ve been beaten up.

In This Heat, it wasn’t the worst it could be, but it definitely unhinged it a lot — much more than I would have expected it to.

But — The very worst of it hits because I am also Autistic,
with MAJOR, MASSIVE Sensory Overload.

The SEVERE Heat, the horrible, buzzing, crawling, Raw PAIN under my skin from how thick and heavy and hot the air is — creating hyper-sensitive nerve endings that means I cannot even touch most of my clothes, let alone wear them — and almost all are too hot anyway. It also means that even the very air touching it is Painful, as it is coming into contact with absolutely Anything Else.

There’s the absolute lack of clear and breathable cool air, the severely shining sun poking its way around closed thick blackout curtains and closed windows because the sound from outside is Too Much To Manage (despite living in a miniscule blink-and-you’ll-miss-it village/tiny collection of houses in the middle of nowhere and in the middling-level hills of Parc Eryri…).

In Every Way, all of this creates More & More Anguish [physical & psychological] on top of anything “normal” that I might have to manage with, pushing my Sensory Overload into Hyper-mode. The unanchored hyper-Anxiety starts the Catch-22 that I cannot come out of, meaning that I can’t do anything to help myself: Anxiety causes more Overwhelm, and more Overwhelm causes more Panic And Anxiety. Once upon a time, I used to go to a book, a film, a TV show or Xbox Game, but now that causes more Overwhelm, instead of Taming It, like it used to do so well.

It is SO Very hot, heavy, humid, and when away from my fans, and within Such Levels Of Heat, I Can’t Even Breathe.

Lucidity is a gift so rarely given and, it’s worse than ever — Functional Seizures, The BlackOuts, are Constant — mainly due to the pressure of the temperature. If I slump forwards in one, I fall outside of the fans’ reach, and when I come to, I Realise I Can Barely Breathe... and shoot back up for cool air from the fans.

The Heat pushes against my body hard.

FAR Too Hard.

Its Oppression is absolute... And I get nothing but Just Another BlackOut. Because my body Absolutely Cannot Cope With It.

One of the worst parts is I Struggle to Drink… ANYTHING. Or Eat.

I have fairly Severe Dysphasia, which is a BAD start. But on top of that part of my body-wide problems from FND and/or Fibromyalgia is… That I CAN’T have too much fluid in my stomach, or even hitting my stomach. Especially if it’s Water-Based.

The Pain is Extraordinarily AGONISING — and as someone with a Cow’s Milk and Soy Milk Sensitivity/Allergy, I get Even Worse Pain from drinking Water than I even do for either of these known Sensitivities…

For YEARS, the most of my fluid intake has come from ice lollies and randomly taken Doppio [double espresso] that makes up about 90ml of coffee. On the rare occasion, I I might be able to have some water in my toddler-sized beaker, which holds a maximum of 200mls. Otherwise, I occasionally manage to drink a small amount of HUEL — specifically Black Label Iced Latte “Flavour”. At least it has some Nutrients in it, as well.

Before this started, I wouldn’t have even laughed about such a prospect; it would have been unfeasible. Yet… Here We Are.

I have no idea how dehydrated I might be, making everything worse.

Last time I was in such an unbearable wall of heat, one where I genuinely struggled to breathe in, was in Thailand. We were very inland, a few hours from Suvarnabhumi [Bangkok] Airport, and it was around 45⁰C outside. It around 3 Years before I ever got to the start of the worst of Illness, and I eventually adapted; enough that a heatwave heating East London to 31-35⁰ maybe 2 or 3 years later was shrugged off as “Nothing” by me — and by then I had even become quite ill and affected by the FND, but the Fibro was being kept in some check by Pregabalin... at that time.

I’ve been back in my Native North Wales since then,
for 11 years now.

I’ve Long Readapted The Other Way — the cold more easily endured, and the heat an abomination that I cannot handle

Thailand was now around 14 years ago, and the adaptation is something my body has — very unfortunately — long forgotten.

And Now... This Heat Is Brutal and Punishing. I’ve been an unintentional victim trapped in A Prison Of BlackOut Cycling and ZoneOuts. Ideally, I would be writing. Or Gaming... I would NOT be suffering Various levels of FND Functional Seizures. Ever.

It’s nothing but a Personal Nightmare
that is impossible to get out of…