ChronicIllness

🌀 Welcome to the scorched mindscape of a British misfit with MS, a dodgy air-con, and absolutely no time for your telly addiction. Expect sarcasm, storms, and suspicious noises from the fridge. 420, 27 Degrees, and the Wheelchair of Death

It’s 4:20 in the afternoon — and I am, in every possible sense, well and truly baked. The sun’s decided to cosplay as Satan’s armpit, cranking the heat to a ripe 27°C. Not hot, you say? Try sitting in a disabled body that handles heat about as well as a vampire handles sunlight, and we’ll see how long before you start hallucinating the Ice Cream Man as your personal messiah.

Blessed Be the Demon Weed Wacker Today’s miracle? The Demon Weed Wacker — a neighbour, friend, or possibly summoned entity — dug my old air-con unit out of the crypt I call a shed. The fact it actually works is a minor act of divine intervention, akin to Jesus showing up just to top off my water bottle and stick it in the freezer.

Until then, I’d been sitting in front of the fridge. Not even for food — which is all poison anyway, thanks to the MS-induced digestive roulette — but for survival. I was bonding with the butter, staring at a melon like it owed me an explanation for my existence.

Ever sat on the toilet projectile vomiting while simultaneously exploding out the other end, wondering if your intestines are trying to escape your body to start a new life? Add pain in certain areas that shall remain unnamed (but rhymes with "soul-destroying abyss") and you’ve got yourself a medical-themed horror short.

Wheelchair of Death™ and the Conservatory Mistake I considered venturing outside, strapping into the Wheelchair of Death™, that faithful chariot of chaos and squeaky regret. But no. One foot outside and the sun said, “Ah yes, rotisserie human,” and I was done. I staggered into the conservatory like some sweaty Victorian ghost and instantly regretted it. Over 100°F in there. I could’ve slow-cooked a lamb shank in my lap.

Now I’m left with a blinding headache, and the tinnitus is going off like Lemmy himself is playing a comeback gig in my skull. It’s like the gods of rock took personal offence to my brain and decided to hold a festival in my ear canal.

Let There Be Storms There’s a storm rolling in now — proper biblical one by the feel of it. Black clouds, sudden wind, the smell of distant lightning. I love storms. The chaos, the noise, the sky throwing an emotional tantrum. Thunder’s just the Earth screaming, and I get that. I feel seen.

20 Years Without the Idiot Box Random thought: I haven’t watched TV in over 20 years. People look at me like I’ve confessed to eating children. “But what do you do?” Well, for starters, not stare into a flickering box that vomits consumerism and stupidity at epileptic-inducing speed.

With MS, television isn’t “entertainment,” it’s visual torture with background laugh tracks. Give me a silent room, a thunderstorm, and the slow hum of the Wheelchair of Death™ plotting my demise in the hallway.

I’m off to lie in front of the air-con like a roadkill vampire, praying the power holds out. If not, you’ll find me back in the fridge, whispering to the yoghurt and preparing for the next exorcism session in the loo.

Stay baked, stay bitter, and remember — if the food’s poison and the sky’s on fire, it’s probably just another Thursday.

looking to buy a second hand q100 wheelcair or similar in the devon cornwall area as mine has gone completely to the breakers yard in the sky ... many thanks sick@mylivinghell.co.uk

        “The views in this post are based on my personal  
          experience. I do not intend harm, only honesty.”  

        “By ink and breath and sacred rage, I write.
                 By storm and silence, I survive.”

⚡Thanks for reading. If you enjoyed this, you probably need therapy — or a fan. Or both. Come back soon for more tales from the Wheelchair of Death™, the Digestive Apocalypse, and the Conservatory from Hell.

🛠️ Powered by sarcasm, swearing, and something that smells faintly of ozone.

Let’s talk about the big, festering elephant in the room: Multiple Sclerosis. Or, as I prefer to call it, the silent puppeteer of mental mayhem. For anyone not familiar — congratulations, enjoy your blissful ignorance. For those of us who are intimately acquainted, we know it doesn’t just nibble at your nervous system like a shy woodland creature. No — MS kicks down the door, flips your brain inside out, and installs a disco ball of chaos where your personality used to be.

I used to be fairly calm. Normal, even. Then MS came along like an uninvited houseguest who never leaves — and suddenly I’m starring in my own Jekyll and Hyde horror flick. No polite build-up. Just creeping dread followed by a full-throttle freak-out. I’m talking foaming at the mouth, incoherent screaming, full-blown berserker mode. Try hiding that from your partner. Try pretending it’s just “a bad day.”

It’s like watching yourself unravel while screaming internally, “WHAT THE HELL IS HAPPENING?!” And the more you try to stop it, the worse it gets. Panic mode? Engaged. Solutions? None. At some point, I ended up on the floor semi-conscious after headbutting a wall, hoping it would jolt my brain back to factory settings.

So now I live by one simple rule: avoid stress like it’s a plague-carrying rat. Because stress isn’t just bad for MS — it’s the bloody ignition key to the meltdown machine. Let’s not forget the heart attack. That little bonus prize from the MS gift basket. 60% heart function now, apparently. What a treat.

Oh, and my voice? Occasionally checks out completely. Just ups and leaves. One minute I’m fine, next minute I’m miming like a drunk Marcel Marceau. People don’t get it. They assume you’re just ignoring them, or being lazy. I once sent my mother a long, heartfelt email explaining it all. Her response? Silence. Well, no — before the silence she asked my partner if I “really” had MS. That was the final curtain on that relationship.

She died a year ago. I wasn’t invited to the funeral. Not told, not asked. Just gone. Eleven years of silence because everyone was “too busy with their lives,” and I was, frankly, the cuckoo in the nest. Never fit in with my birth mother’s life, nor my adopted mother’s. Just the family subplot no one talks about.

That said, meeting my half-siblings was a strange and wonderful thing. I’m sure they found it weird too. “Surprise, here’s your brother you never knew about, also adopted, and he comes with emotional baggage and inappropriate sarcasm.” Meeting my birth mother was like attending a surreal theatre performance. At the time, she was dating a bloke younger than me. Classy.

She lied about my father. Even got her sister involved. One day, she phoned me crying, saying my dad had died in a motorbike crash. I didn’t buy it. I could feel he was still alive — don’t ask me how. I just knew. I sat with Albertine and we asked the Universe for help (as you do when reality fails you), and lo and behold — we found him. In New Zealand, of all places. And guess what? I had a full sister, also adopted.

Turns out all the lies, secrets and cover-ups were just damage control for decisions made in the 1950s — that golden era of social shame, polished smiles, and secrets buried under six feet of denial.

looking to buy a second hand q100 wheelcair or similar in the devon cornwall area as mine has gone completely to the breakers yard in the sky ... many thanks sick@mylivinghell.co.uk

        “The views in this post are based on my personal  
          experience. I do not intend harm, only honesty.”

So here we are, diving headfirst into the weirdness that is my life — or what’s left of it after being slowly, methodically gnawed apart by progressive multiple sclerosis. Charming, right?

I knew things weren’t quite right from the start. I wasn’t imagining it, pretending, or trying to skip PE. I was nine years old with legs like jelly and nerves that fired like broken Christmas lights. I knew something was off. My body wasn’t working properly. It never has. And it’s been downhill ever since — no brakes, no map, no helpful roadside breakdown service.

Spoiler alert: I have MS. Progressive MS. The slow-burn, never-look-back, “enjoy the ride, it only gets worse” variety. And I’ve been fighting it for over 50 years — most of that in silence. Unheard. Unseen. Ignored. Dismissed. “Attention-seeking.” “Hysterical.” You know the drill.

Back then, there was no MRI magic or lumbar puncture fun day out. No one believed me. No one wanted to. The doctors — ah, bless them — thought I was putting it on. For the drama, I suppose. Because pretending to lose control of your limbs is all the rage when you're a kid trying to survive school.

Forty years. That’s how long it took them to finally notice. Forty. Can you even fathom that? I had all the textbook symptoms, but apparently, I was just making a lifestyle choice — you know, becoming progressively disabled for the vibes.

Eventually, they finally dragged me into hospital for all the fancy tests that proved, lo and behold: I wasn’t a liar, I wasn’t mad — I was just slowly falling apart from something called MS. Ta-dah. Gold star. Thanks for coming.

And honestly? It was a relief. Not the diagnosis — that sucked. But the proof. The closure. The validation. After decades of being told it was in my head, turns out it was in my spinal cord all along. Go figure.

But here’s the twist — I didn’t just survive that hell. Somewhere along the line, I changed. Call it spiritual, call it delusional, I don’t really care — I had what you might call a cosmic chat with the universe. Serapis Bey (look him up if you like mystics with style) paid me a visit, and something clicked. I shifted. I transformed. Something deep happened.

I’m not the person I used to be. Not even close. And people who knew me before can’t believe the person standing before them now. It’s like I underwent a total soul renovation with added glitter and spiritual scaffolding.

This world isn’t built for people like me — the weird, the ill, the eccentric, the inconvenient. If you’re different, you get ignored. Gaslit. Written off. But I’m still here. And I’ve got a voice, even if some days I barely have the strength to lift a cup of tea.

So here’s my truth: I’m strange. I’m spiritual. I’m sarcastic. I’m raging at the system but laughing through the pain. I have MS — but I’m still me.

To the others out there, like me — the unheard, the “difficult cases,” the ones who’ve been shoved into the corner because they didn’t tick the easy boxes: you’re not alone.

Don’t let this world break you. Let it sharpen you.

Rebuild. Reclaim. Be weird. Be you.

And if you’re ever in the dark, just remember — some of us are out here, lighting the way with rage, humour, and a whole lot of “f*** you” to the system that failed us.

🧠💥 40 Years Misdiagnosed. Still Here. Still Loud. They told me it was in my head. It was — just also in my spine, my nerves, and every inch of my being. This is the story of living with undiagnosed progressive MS for over 40 years. Ignored. Dismissed. Unheard. And yet — I never gave up. I changed. Spiritually, physically, mentally. I became something else. This one’s for the misfits, the chronically ill, the eccentric warriors who’ve been told to sit down and shut up. We’re not going anywhere.

🕊️ Who is Serapis Bey? Serapis Bey is known as an Ascended Master — a spiritual teacher who once walked the Earth and has since transcended to guide others on their soul’s evolution. Often associated with the energy of discipline, transformation, and spiritual rebirth, he’s considered the keeper of the White Ray of Ascension.

In short? He’s the no-nonsense cosmic coach who shows up when your life’s gone full chaos and it’s time to rise from the ashes — stronger, clearer, and more you than ever.

He helps guide those going through massive life shifts, especially when it feels like you're being spiritually remade from the inside out. Think: divine tough love with soul-level purpose.

sick@mylivinghell.co.uk

       “The views in this post are based on my personal  
          experience. I do not intend harm, only honesty.”