MS

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

Somewhere between the last tick of the clock and the first drip of morphine, the bells started ringing again. Not church bells no. Church bells are polite, distant, Sunday-morning illusions. These were division bells. The kind that toll when your mind’s had enough of being reasonable and your body’s thrown in the towel. The kind that echo through hospital corridors and half-remembered dreams of youth, when the world still felt like it might one day make sense.

They said there were “High Hopes” capital H, capital H, as if that made it more official but I don’t recall signing up for the sequel to Pink Floyd’s existential midlife crisis. I was too busy trying to work out how to get out of bed without summoning a small army of pain gremlins. They march at dawn, those bastards, armed with canes, cramps, and a sick sense of humour.

I remember when the grass was greener. Before it was paved over by mobility scooters and medical appointments. Before every sunrise came with the question: “What part of me’s not working today?” I used to walk no, stride across fields, the wind howling like some cosmic prankster whispering, “You’re immortal!” Turns out, I was just really bad at reading the fine print.

Now the wind howls through the cracked seals of my van, Rusty One, smelling of WD-40, dog biscuits, and defiance. Yopi, my furry therapist and four-legged anarchist, sits in the passenger seat judging humanity with the serene disdain only a dog can manage. Together, we drive through Dark’s World a place that’s half blog, half fever dream, half post-apocalyptic memoir. (Yes, that’s three halves. Don’t do the maths. Reality stopped balancing books long ago.)

Chronic illness isn’t a slow fade. It’s a dark comedy written by Kafka and directed by Monty Python. One minute you’re philosophising about consciousness, the next you’re wrestling a wheelchair that insists on acting possessed. “Exorcise this thing!” I mutter, as Yopi gives me the side-eye that says, “You bought the cheap batteries again, didn’t you?”

Every day’s a strange mixture of grief and giggles. The body fails, the mind rebels, and the soul just sits there in the corner, rolling its eyes. I’ve met God or at least the cosmic version of a system admin and let me tell you, they’re as confused as the rest of us. The script got corrupted somewhere around 2020. Now it’s all patch updates and glitchy humans pretending the world isn’t buffering.

But there’s poetry in the breakdown. Beauty in the absurdity of a life that refuses to play nice. When you’ve lost enough, laughter becomes rebellion. You laugh because the alternative’s a long nap you might not wake up from. You laugh because, deep down, you know the universe is trolling you and you’ve decided to troll it back.

Sometimes I watch the leaves fall like burnt-out neurons and think: this is the soundtrack to every high hope I ever had. And then that eternal voice drifts in from the background

“The endless river… forever and ever…”

Yeah, alright mate but this river’s full of potholes, hospital letters, and dog hair. Still, we sail it. Because what else is there to do but keep floating, sideways, through the muck of memory and malfunction?

In Dark’s World, there are no “motivational quotes.” Just dark jokes and half-empty mugs. We don’t chase perfection. We chase moments small, absurd, brilliant flashes of clarity. Life is an out-of-tune guitar still being played because the song’s not done yet. You make noise. You make meaning. You keep going.

And the bells? They still ring, faint and distant not as warnings, but as reminders. That even when everything breaks, the music doesn’t stop. It just gets weirder, more honest, and a hell of a lot louder.

So here’s to the fallen and the foolish, the sick and the sarcastic, the dreamers and the defiant. We’re still here rolling, writing, laughing, swearing, and refusing to shut up. High hopes? Not quite. Just raw, crooked, darkly glowing ones forged in hellfire and humour.

And somewhere, far off in the fading light, a bell rings again. It doesn’t divide anymore. It just echoes.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ @goblinbloggeruk - sick@mylivinghell.co.uk

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

The leaves are bailing out like they’ve seen next quarter’s energy bill. I took Rusty One the van out, and my electric chair sulked like a teenager told to walk the dog. It hates the cold. Same, mate. I’ll need to keep everything charged like a hospital Christmas tree, or I’m going to be crawling to the kettle.

Woke at 04:30 standard hell o’clock with pain loud enough to need a volume knob. Lay there thinking the usual deep thoughts: why, how, and where did I put the brain I used to have? Dropped back off till 06:30, then the body staged its morning coup. Everything seized. The cold climbed inside and refused to leave. Charming.

I don’t drive or ride anymore MS ate the balance, then came back for dessert and took the cognition. Travel sickness joined the party because apparently the body wanted a plot twist. Motion turns my head to soup; the kind they serve cold with a side of sarcasm.

Meanwhile, Yopi the alpha blueblood bulldog, house tyrant, 23 kilos of warm gravity is in excellent spirits. She’s blown through a B&M squeaky toy in about five minutes, which is a personal best if you’re into swift annihilation. Two front paws on my thigh, breath on my face, jaws like a medieval exhibit, eyes saying “belly rub or else.” She is now auditioning for “lap dog” in the wrong size.

Kibble? That beige gravel? She stares at it like I’ve served packing peanuts. Wet food, though acceptable. Rice with tuna? She ascends. Mackerel? She goes full comet. Albertine showed me a massacre of old toys a crime scene with fluff for snow. We mourned briefly and moved on.

As for me: it’s the bad slice of the day. Pain gnawing. Nausea playing DJ. The screen glaring like an interrogation lamp while I two-finger type my way through the fog. The plan is simple: bed, dark room, no noise, no heroics. Just a truce with the nervous system until the next round.

Autumn is pretty if you’re a tree. For the rest of us, it’s rust.

Afternoon AI: Brain status — 12% battery, 78% sarcasm, firmware throttled by cold weather. Recommended patch: tea, blanket, and a dog snoring like a faulty tuba.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

@goblinbloggeruk - sick@mylivinghell.co.uk 𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

People love to quote Plato like he was the first bloke to stare at a wall and call it a revelation.
“Look,” they say, “we’re all prisoners in the cave of illusion.”
Nice theory, mate.
Try living in a body that’s staging a coup d’état against your nervous system, and tell me again about shadows.

Progressive MS the words themselves are a joke.
Progressive, like I’m advancing somewhere.
All I’m advancing toward is gravity, confusion, and the slow betrayal of my own wiring. My legs don’t walk, my hands improvise, and my mind sometimes wanders off without leaving a note. If that’s not Plato’s cave, I don’t know what is. Only mine’s not carved in stone it’s flesh, bone, and electrical static.

Plato imagined people chained, staring at shadows, mistaking illusion for reality.
I get it. I mistake memories for motion every day.
I remember what it felt like to move freely the smooth mechanical grace of a body obeying thought.
Now it’s all echoes on the wall.
I reach out for those memories like a fool, knowing full well the limbs won’t answer. That’s the cruelty of it: the mind remembers what the body refuses to perform.

They say gnosis that secret knowing is enlightenment.
Bullshit. It’s not light pouring in. It’s the realisation that there is no exit.
The body is the cave. The mind is the flickering torchlight throwing half-truths across the wall.
The trick isn’t escaping — it’s learning to see in the dark.
To live with the shadows long enough that they start whispering secrets.

Some days the fog rolls in, and cognition slips through my fingers like smoke.
That’s when the cave gets loud echoes of frustration, grief, rage.
But beneath that noise, there’s something else: stillness.
When the body fails, awareness sharpens.
It’s like the universe is saying, Fine, you can’t move so you’ll learn to observe.
And in that stillness, gnosis crawls in. Not as comfort, but as clarity.

Plato’s philosopher escaped the cave to see the light of truth.
I’m not escaping anywhere.
The ascent isn’t physical; it’s inward.
It’s turning toward the source that’s both pain and perception, realising you were never separate from the wall, the fire, or the shadow.
You’re the whole damn projection body, soul, and malfunction.

So yes, I’m stuck in my cave. But it’s mine.
The shadows on the wall are memories, regrets, small victories, and dark jokes that only I laugh at.
Sometimes they dance. Sometimes they just sit there, silent and honest.
And that’s enough.
Enlightenment doesn’t mean walking out into the sun — it means looking straight at the darkness and recognising your own reflection.

Maybe Plato climbed out.
Maybe I just learned to redecorate.

Either way, the cave’s got Wi-Fi now, and I’ve got words.
The shadows move, the neurons misfire, but I’m still here still watching, still learning, still goddamn alive.

Plato had his cave. I’ve got MS, a powerchair, and a front-row seat to the shadows. You don’t escape the body you learn to see in the dark.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ @goblinbloggeruk - sick@mylivinghell.co.uk

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

As I look out the window, the hail is hammering the glass like nature’s own gang of thugs with ice-cubes. Each impact rattles through the room, echoing the storm going on inside my head. The concrete outside is now polka-dotted with white splats, like some deranged pastry chef has been at it. Above, thick, dark clouds are parked overhead, glaring down at me with all the charm of a nightclub bouncer at closing time. They’re not moving. They’re just there giving me the big “FU” while the sun tries to photobomb from behind them, throwing out an oddly warm glow.

Normally, I’m colder than a fish finger left at the back of the freezer. My hands are like small icebergs, my circulation having given up years ago. But somehow, in this moment, I actually feel a bit of warmth. Weird, right? My throat and neck, on the other hand, are throwing a tantrum that familiar strangulation feeling wrapping around the right side of my throat and Adam’s apple. Lucky me, it’s only a half-strangle today. Always a silver lining.

The top left of my head is doing its usual numb, pins-and-needles number, and the background soundtrack is a hellish lift music loop from the underworld. Perfect timing too because Rob Zombie just started blasting from my PC, in German of all things. It’s like being trapped inside a very confused nightclub. My hands are blocks of ice, typing slower than dial-up internet, but here we are.

When the Wall Hits Back

Years ago, in a particularly bad storm of frustration, I headbutted a wall. And yes, the wall won. Knocked myself out cold. Not my proudest moment, but it did force me to confront a few things I’d buried. Mental health wasn’t a conversation it was a brick wall. Literally.

I felt completely misunderstood, like shouting into a void where nobody bothers to echo back. The only reason I got through it was because of my partner 42 years together and tougher than steel. We went through hell side by side, piecing my brain back together over five long years. Eventually, I realised what was gnawing at me: PTSD. Once I called it by its name, I could finally start wrestling it properly.

The Pain People Don’t See

Physical pain and mental pain love to hold hands; they’re like a toxic couple that won’t break up. People see the wheelchair, they see the physical stuff, but they don’t get the soundtrack in my head, the weird sensations, the pressure, the fading memory.

I always tell people: go to your GP or a mental health professional. Get help. Don’t do what I did. My route was raw, brutal, and not for the faint-hearted. I’m a proud disabled man who’s learned to embrace his Marmite nature you’ll love me or hate me, but I’m not hiding anymore.

I’ve spoken to the ghost in the machine. It told me I’ve got purpose, and I bloody well believe it.

The Present Storm

The hail is still bashing the windows. Yopi the dog has just let one rip, and I’ve remembered to stop breathing through my nose. The little things keep me grounded. My memory’s slipping more these days, the right side of my head feels like it’s stuffed with wet sand, but I keep rolling.

Every journey in my powerchair is a trip into the unknown. Sometimes it’s chaos, sometimes it’s peace, usually it’s somewhere awkwardly in between. But I’m still here. Still moving. Still me.

Afternoon AI

Today’s weather forecast: 90% chance of hail, 100% chance of existential commentary, with occasional German industrial metal.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ

@goblinbloggeruk - sick@mylivinghell.co.uk

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

So, chronic illness. A joyride through hell in a wheelchair made of barbed wire. If you’re in the club, I don’t need to tell you it’s exhausting, absurd, and sometimes the only option left is to laugh before you cry yourself into a flare.

Here are 10 “fun” facts about chronic illness that might make you laugh, groan, or throw something.

1. The “Invisible” Magic Trick I’m fine. I look fine. Until I’m not. My body does the disappearing act of a Vegas magician, minus the applause. Cue the genius asking: “But you don’t look sick?” You’re right, Sherlock. Neither does Wi-Fi, and yet here we are.

2. Chronic Illness Is Weirdly Popular Statistically, over half of adults have at least one chronic condition. That’s right, 50% of people are secretly walking (or limping) into the club. Pity the membership perks are rubbish.

3. Genetics: The Family Heirloom No One Wanted Some families pass down houses, jewellery, or good bone structure. Mine passes down arthritis and dodgy immune systems. Cheers, ancestors.

4. The Bonus Round: Mental Health It’s not just your body. Chronic illness takes your mind out back and kicks it around too. Depression, anxiety, stress it’s like getting the “deluxe” package nobody ordered.

5. Cure? Ha. Science is trying, bless them. But for now, it’s all “management.” Basically, we live in the land of trial-and-error self-care. Sometimes exercise and kale help. Sometimes they just remind you that life is a cruel joke.

6. Lifestyle as a Job Description Managing your health is like being a houseplant with trust issues. Food, light, water, stress control. Do it right and you might thrive. Do it wrong and you wilt in public.

7. Predictability? Never Heard of Her. You plan a nice day? A flare hears you and says, “Not on my watch.” Your body is basically a toxic relationship: charming when good, brutal when bad.

8. Personal Growth, Whether You Like It or Not You get tough, resourceful, and annoyingly self-aware. Like a Jedi, but with a stick instead of a lightsaber. Independence? Optional. Asking for help? Necessary.

9. Tech Symbiosis Welcome to cyborg life. Fitbits, apps, pill alarms machines have become my sidekicks. My body rebels; my tech tattles. Together, we’re barely functional.

10. You’re Not Alone It feels isolating, but the internet is crawling with people who get it. Forums, Facebook, Reddit, Insta tribes they exist, and they’ll make you feel less like a freak in the void.

Closing Thoughts Chronic illness isn’t fun. It’s savage. It rips your plans apart, laughs in your face, and occasionally ruins your life for sport. But it also forces you to find humour in places most people would rather look away from. That’s resilience. That’s survival. And if nothing else you’re not alone in the madness.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

When Your Brain Betrays You Before Your Legs Do

Multiple sclerosis has a knack for picking the cruellest, most intimate places to steal from you. People expect the visible the limp, the cane, the visible fatigue. Those feel negotiable: you buy different shoes, you learn new routes, you ask someone to carry the groceries. The invisible theft is nastier, because it takes things you don’t know how to replace: the steady line of your thoughts, the little plug that supplies the right word, the sense that you are the same person you were yesterday.

Let’s be blunt: cognitive changes in MS are terrifying. They are not a failure of will. They are not melodrama. They are neurologic reality. And they hurt in a way that doesn’t leave bruises but hollows you out.

What it feels like - Thought drift: mid-sentence, your mind steps out for a cigarette and forgets to come back. You re-read the same paragraph three times and still miss the point. - Word loss: it’s not just “on the tip of my tongue.” It’s watching language implode. Proper names vanish; everyday words hide like shy pets. - Slowed processing: decisions that used to be automatic now come wrapped in molasses. You have to consciously unspool what used to be seamless. - Short-term memory gaps: you can hold a story for decades but forget why you walked into the kitchen. - Emotional ripple effects: shame, anger, grief — often louder than the cognitive symptoms themselves.

Why this terrifies us Because our identity lives in memory and in the continuity of thought. When that continuity fractures, you don’t just lose a function — you lose the scaffolding that holds who you are. For everyone who’s felt this: the panic, the grief, the small, private funerals for who you used to be — it’s valid.

How to live with it (practical, not patronizing) These are not miracles. They’re tools, routines, and tiny rebellions that let you keep building a functioning life when the wiring is noisy.

• Externalize memory

  • Notes everywhere: short, clear labels. Notebooks, sticky notes, digital note apps — pick one and stick to it.
  • Use alarms and timers for appointments, meds, and transitions.
  • Photo prompts: snap pics of things you want to remember (where you parked, what you brought to an event).

• Structure decisions

  • Reduce friction: pre-plan meals, outfits, and errands.
  • Decision rules: limit choices (two outfits only; one grocery list template).
  • Routines become Armor: mornings and evenings on autopilot save cognitive energy.

• Chunk tasks

  • Break things into 10–20 minute blocks.
  • Use checklists with visible progress markers.
  • Allow micro-breaks — short rests reset attention.

• Communicate with intent

  • Tell trusted people what’s happening in simple terms: concrete examples and specific asks help.
  • Use one-liners when you need help: “I need extra time,” “Please remind me in 10 minutes.”

• Use tools that fit you

  • Voice memos for ideas that evaporate.
  • Text-to-speech and speech-to-text when reading or writing is hard.
  • Calendar-sharing with a partner or friend.

• Train, gently

  • Cognitive rehab and occupational therapy can help re-train strategies; they’re not magic but they work for some people.
  • Brain games? Use them as gentle practice, not cures.

• Prioritize sleep and manage energy

  • Fatigue amplifies cognitive issues. Rest strategically.
  • Learn your “best hours” and schedule demanding tasks then.

• Manage the emotional impact

  • Let yourself grieve. Anger and panic are normal reactions, not failures.
  • Find a place to be raw: a journal, a private blog, a therapist, or a safe online community.
  • Celebrate tiny wins. Remember that progress isn’t always linear.

When you need to make hard choices Some losses demand adjustments: job changes, shifting responsibilities, planning for legal and financial contingencies. Those conversations are brutal but practical. Put important documents in order, name a trusted person for support, and consider professional advice early rather than waiting until a crisis.

Words to live by when it’s darkest - You are more than a symptom set. Cognitive changes do not erase your core worth. - Small systems beat big intentions. A single alarm is more useful than a perfect plan you can’t remember. - Humor helps when it can — and if it doesn’t, that’s fine. Crying is a strategy sometimes.

You are not alone This is not a vanity project or an isolated tragedy. Many of us know that fog, and we learn to navigate it together — trading tips, commiserations, and the occasional dark joke. If writing back at MS is your rebellion, keep writing. If whispering the small facts into your phone keeps your day tethered, do that. If you need to scream into a pillow, scream.

MS can take things. It will not get your entire story unless you let it. Keep the notebooks, the alarms, the friends who check in, and the words you refuse to lose. Keep writing, because every sentence you manage is a victory, and every honest post a beacon for someone else lost in the fog. Not today, MS. Not today.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

Ah, Monday. Everything in my body decided to go berserk overnight. MS? Revving its engine like it’s auditioning for the grand tour. Neck bone growths pressing on nerves? Check. An X-ray from ten years ago says hi. Time to see the doctor, I suppose if I survive the existential dread of the waiting room.

Strangulation sensations, head blips, tongue spasms oh, and the sweet bonus of not being able to catch my breath. Honestly, my body’s doing the kind of mad shit that would make anyone else file a formal complaint. I pity the doctors and nurses who have to deal with me. Truly. But hey, life’s a circus.

White‑coat syndrome is my sidekick. I talk to medical staff like a squirrel on espresso: chaotic, twitchy, and unintentionally antagonistic. My solution: write everything down. Hand the chaos over in neat little bullets. Works great—until I forget, which is pretty much guaranteed, and then I’m a full-blown, stressed-out disaster. Doctors are busy, complicated cases suck, I get it.

I’ve tried it all. Meds? Side effects so bad my body staged a protest. Seven-day hospital admission? Almost happened, but I said “fuck it” and walked. Holistic methods, lifestyle overhaul, mind-body-soul cleanse—my own brand of chaos control. Fix? Plumbstick there isn’t one. Options? Sure. Natural? Works for me.

Present me? Ambivalent, tethered to this illness 24/7. Tinnitus now “harmonizes” with Blondie, which is absurdly funny if you squint. Yopi is decompressing, slowly realising this is a loving home and not just a mildly terrifying human experiment. Fingers tingle. Tips go numb. Neck frozen solid. Chair = coffin. No work today small mercy. Big Rusty, the van, needs welding later. Life continues its beautiful joke.

Sky’s stormy blue. Smell of dog treats inexplicably on me. Vitamins? Taken. Hydration? Achieved. Creativity? Maybe later images, poems, whatever chaos I can conjure.

No solutions. No neat endings. Just a mess of body, mind, and dark humour plopped straight onto the page. F00k it, this is today.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

The Fatigue Olympics — A Users’ Guide to Collapsing with Style

You know that moment when your body files for bankruptcy mid-toast? Welcome to the Fatigue Olympics: events nobody asked for, medals nobody wants, commentary provided by a goblin with a migraine and a sense of humour darker than a southern sky in February.

Opening Ceremony (lights off, obviously)

No fireworks. Too bright. We light a tea candle, stare at it for four minutes, then cancel the parade because we’re exhausted from thinking about it.

Events

100m Dash to the Loo

You stand. The world tilts. Knees write a resignation letter. Heroic sit-down pee. Gold medal for not crying on the bath mat.

Toast Marathon

Aim: butter toast. Outcome: butter floor, butter dog, butter despair. The toaster dings like a smug little tyrant. DNF (Did Not Finish), again.

Sofa Free-Climb

Mid-sentence coma. You wake three hours later with a crumb fossilised to your cheek. Was it an important conversation? Probably. Did you survive? Also probably.

Shower Sprint

You manage one armpit and a stern glance at the shampoo. Podium finish if you got your hair wet on purpose.

Remote-Control Deadlift

Attempt to change channel. Drop remote on face. Pretend it was “mindfulness.” Bronze medal for not swearing at inanimate objects (you swore).

Stairs Biathlon

Climb and breathe. That’s it. That’s the sport. Personal best if you don’t consider simply living at the top step forever.

Grocery Gauntlet

Entering the shop was hubris. Leaving is a quest. Bread is heavy now. Who made bread heavy?

Scoring System

Finished without crying: +10

Finished while crying: +20 (tears count as electrolytes)

Didn’t finish but made a meme about it: automatic silver

Cancelled the day and survived: lifetime achievement award

Why this isn’t “just being tired”

Fatigue is a hostile takeover. It hijacks signal from brain to body and replaces it with static. You’re not lazy; your wiring is on fire. Some days clarity visits for a few hours; you shift your mindset, put on music, make art, write something grim and honest, and that tiny act becomes revolutionary. That’s the win: not pretending it’s fine—moving anyway, even if “moving” is tapping one sentence and then lying down like a Victorian ghost.

Closing Ceremony

We applaud in our heads to conserve energy. The anthem is played at half-speed. Everyone leaves early and naps like champions.

Post Footer: Practical Notes (because survival is punk)

Lower the bar until you can step over it. Then lower it again.

One task = a win. Two = a parade.

Music, art, writing: not hobbies—lifelines.

If anyone calls you “brave,” invoice them.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle. 𐑢𐑨𐑑𐑒𐑣𐑧𐑮 𐑨𐑥𐑴𐑙 𐑢𐑨𐑑𐑒𐑣𐑧𐑮𐑕

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

I know its Friday..not been so good...late post..

It’s Thursday. Rain hammering the windows like a bastard taxman. Fingers numb, throat strangling me like invisible hands trying to choke the last swear word out of me. Breathing stupid. Feel like puking. MS is a puppeteer with broken strings, and I’m the marionette twitching on the floor.

So I lean on the secret weapon: AI. I smash the keyboard with numb hands, gibberish spills out, and the machine stitches it into sense. Without it, I’d be gone. With it, I’m still here, still ranting, still clawing the page. That’s life now: goblin vs. entropy, assisted by silicon.

Last night: only up once. Bliss. Still woke shattered, like I’d been dragged behind a lorry. Tinnitus is screaming like a rave in a biscuit tin. Al Stewart can’t drown it, Sabbath can. I miss the rides the engines, the crew, adrenaline punching your veins until you felt immortal. Now I get my kicks from antihistamines and nostalgia.

But there’s a dog coming. A rescue beast with eyes like trouble. She’ll chew my slippers and rearrange my world, and I say yes, please. New orbit needed.

People ask: “How do you keep going?” Answer: I don’t. I collapse, I swear, I threaten the universe. Then I get up again because fuck lying down. Music, art, writing, sarcasm. That’s my oxygen. Neuroplasticity? Sure, call it that. I call it stubborn rewiring with duct tape.

And now cannabis. Medical marijuana. Not fairy rings and mushroom cults. Real, legal, prescribed. The plant they jailed people for now comes with a bar code and a receipt. Hypocrisy tastes bitter, but relief tastes better.

Positive points (the blunt edition):

Pain: Cannabis tells nerve pain to piss off. Doesn’t cure, but takes the edge off enough to breathe.

Spasticity: MS muscles seize like rusty hinges. Weed oils ease the vice-grip. Less claw, more unclench.

Sleep: Nights of pacing and madness? Sometimes cannabis knocks you sideways into actual rest. A miracle in itself.

Nausea & appetite: The body wants to puke? Cannabis reroutes you towards a sandwich. Beats wasting away.

Anxiety: Not gone, but softened. Panic becomes background noise instead of a bullhorn.

Is it perfect? No. But compared to Big Pharma’s endless pills and side effects, cannabis feels like sanity. Not a cure, not salvation just a tool that works.

So here I am: Thursday, rain, tinnitus screaming, body trying to strangle itself, AI turning my mess into words, medical marijuana holding the line, Sabbath howling in the background. I feel like a six-year-old with villain energy. I’m weird. I’m wired. And I’m alive.

Not inspirational. Not pretty. Just survival with jokes.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

Living with multiple sclerosis (MS) is a bit like being dropped into a labyrinth where the walls are invisible and the floor is made of Lego. Every day is a surprise party, but instead of cake, you get fatigue, brain fog, and a lottery of weird symptoms. Your body speaks a language all its own a sort of biological Morse code. Spoiler: it’s mostly complaints.

1. The Body’s Whispers (AKA the Passive-Aggressive Texts from Hell)

Your body doesn’t scream right away. Oh no. It whispers, “Maybe don’t do that,” in the kind of tone your nan uses when she means “If you do, you’ll regret it forever.” Ignore it, and you’ll get the full “MS meltdown” treatment. Learn to listen to these gentle hints before they become a four alarm disaster. Trust me, your body wants you to fail the ‘ignore me’ test.

2. Embracing the Rollercoaster (Or, Why I’m Sometimes a Superhero and Sometimes a Sloth)

MS is the ultimate ride. Some days you wake up and think, “Yeah, I could probably take over the world.” Other days you make sloths look like adrenaline junkies. Don’t fight it. Embrace the madness. There’s no refund for this ticket anyway. If you can laugh when your legs forget they exist, you’re already ahead.

3. The Power of Positivity (But Not the Cheesy Kind)

Let’s get real: “positive vibes only” is for people with motivational mugs, not MS. Real positivity is finding a smirk in the struggle. Did you get out of bed today? Bloody legend. Did you find a reason to laugh, even if it was at yourself? That’s winning. Celebrate the tiny victories because some days, they’re all you’ll get.

4. Mindfulness: Your Secret Weapon (Or, The Only Time Silence Isn’t Suspicious)

No, mindfulness won’t cure MS, but it might stop you from headbutting a wall. Check in with yourself. Is your body grumbling, squeaking, or plotting revenge? Maybe it’s time for a rest, a stretch, or just a massive bar of chocolate. Mindfulness: because you can’t afford to ignore the warning lights on this old banger of a body.

5. Building Your Support Squad (Or, Assembling Your Band of Misfits)

Find your people. The ones who get it, the ones who don’t offer herbal tea as a cure. Whether it’s other MS folk, stubborn friends, or just some poor soul who doesn’t run when you say “incontinence,” keep them close. Empathy makes the pain bearable and the jokes darker. Don’t let anyone tell you it’s weakness to ask for help—sometimes, it’s just good strategy.

6. Finding Your Voice (Because Telepathy Still Isn’t Covered by the NHS)

Speak up. For your needs, your rights, your weird symptoms. Don’t let the world turn you into a prop in your own life story. Your voice might tremble, but it matters. The more you say, the more others understand and maybe, just maybe, the world will get a clue.

Bonus Track: The Legend of the Overworked Neuros

Let’s give a round of applause (or maybe just a sarcastic slow clap) for the overworked neurologists. They’re busier than a one-legged man in an arse-kicking contest, running from clinic to clinic, dodging patients like ninjas in white coats. Actual patient appointments? That’s rich. You’re more likely to win the EuroMillions than see one before your wheelchair warranty expires.

The NHS says “your neuro will see you now,” but what they mean is: “He’ll see you on the mural in the waiting room. Or as a hologram projected from his last known location.” Some say if you light enough scented candles and chant “re-referral” three times, a neuro will materialize… but only to tell you that your next appointment is scheduled for June 2036.

The truth is, neuros are overworked too many people, not enough doctors, and a health system held together with sellotape and wishful thinking. But while the overworked neuro vanishes like a magician at a kids’ party, you’re left to decode your own body’s malfunctioning Morse code and hope you don’t accidentally google yourself into a full blown panic attack.

If you do spot a neuro in the wild, be gentle. They scare easily and may bolt for the exit if approached. In the meantime, keep calm, decode your own symptoms, and remember Dr. Google and Nurse Sarcasm are open 24/7.

Bonus Track 2: The Thankless Saints MS Nurses

While the neurologists are off playing hide and seek, let’s talk about the true legends: MS nurses. They’re the ones on the ground, fighting fires with a teaspoon and answering emails like their keyboard’s on fire. Somehow, they manage to be calm, knowledgeable, and kind even when you’re one question away from a meltdown and have already left nine voicemails.

MS nurses are the unsung therapists, detectives, and sometimes part-time magicians (“You’ve tried turning it off and on again? Excellent now have you tried snacks and a nap?”). They field the panicked questions neuros don’t have time for, translate medical jargon into English, and manage to keep us (and sometimes themselves) just the right side of losing it.

Are they overworked, underpaid, and under-appreciated? Of course! Do they do it anyway, with a level of patience and gallows humour that should earn them a sainthood (or at least hazard pay)? Absolutely.

If you’re lucky enough to have an MS nurse who answers the phone and doesn’t flinch when you ask if your “weird new symptom” means you’re dying buy them a coffee. Or a spa weekend. Or just send a thank you meme. Without them, the whole bloody NHS MS system would collapse faster than my legs after a walk to the fridge.

So here’s to the MS nurses: holding it all together with skill, sweat, and the sort of thankless determination that deserves a medal (or at least a pint).

Bonus Track 3: The Unsung Heroes Support Groups, Volunteers & Charities

If you think the NHS is barely clinging on, imagine life without the MS support groups, charities, and stubborn volunteers who do it all for the love of the cause (and maybe the free biscuits at meetings).

Support groups: These legends run by people who actually get it are the real backbone of the MS world. They’re the ones who answer your late night freak outs, decode the NHS bureaucracy, and know which GP receptionist has the good biscuits. In-person, online, or just a WhatsApp meme away, they turn “I’m losing my mind” into “You’re not alone, mate.”

Volunteers: The ones who give their time for free, organizing meet-ups, fundraising, sending out info packs, and listening to rants from people like us without ever losing their patience. Half the time, they’re managing their own MS or supporting someone who is but you’d never know, because they’re too busy holding everyone else up.

Charities: Whether it’s the MS Society, MS Trust, Shift.ms, Overcoming MS, MS-UK, or any of the local grassroots warriors, they’re out there lobbying, funding research, and somehow keeping hope alive in a world that sometimes feels like it’s sponsored by despair. Without them, you’d still be Googling “what the hell is MS” while the NHS phone queue loops you back to start.

Are they underfunded, overstretched, and powered mostly by stubbornness and biscuits? You’d better believe it. Do they keep the whole community from falling through the cracks? Absolutely.

So here’s a genuine, sarcastic-but-serious thank you to every support group, volunteer, and charity keeping the MS circus running. If you ever wondered who the real unsung heroes are it’s the lot turning lived chaos into lifelines.

Raise a mug (or a wheelchair, or just an eyebrow) for them they’ve earned it.

Conclusion: Embrace the Weird, Survive the Storm

Living with MS means forever learning a new dialect of pain, fatigue, and absurdity. The “invisible code” is always changing, but your ability to listen and laugh might just be the best tool you have. Don’t sugar-coat it. Don’t let anyone else either.

So here’s to listening to your body, celebrating every little win, and flipping MS the metaphorical V-sign as often as possible. You’re not alone. And you’re not invisible.

Now, go on decode the next bloody signal. And if you’re looking for rainbow platitudes, you’re in the wrong blog.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.