The weird eccentric ramblings of a multiple sclerosis sufferer

⚠️ 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 help.

So here we are again. Welcome back to my personal theme park of dysfunction where the rollercoasters are broken, the staff are asleep, and the exit sign fell off in 2009.

Multiple Sclerosis. Still invisible. Still terrifying. Still a cosmic joke I apparently lost a bet to star in.

Let’s talk about what happens after you’ve accepted that the cavalry isn’t coming. After the letters go unanswered. After the referrals get “lost in the system.” After your soul has been politely chewed up and posted second class back to your postcode.

A Day in the Life of Brain Soup Cognitive dysfunction? Oh, it’s not just forgetting where your keys are. It’s forgetting how words work. It’s being mid-conversation and suddenly losing your internal narrator. It’s that gut-punch moment where you’re reading something you wrote and it reads like a stranger’s scribbles.

I used to be sharp. I read people for a living. Now I read shampoo bottles like they’re ancient texts.

Still, give me a keyboard and a minute, and something snarling and poetic might escape.

Scooter of Death, Version 7

Left the house on the three-wheeled scooter of death a clunky beast with ideas above its station. Only half-charged, because the universe has a sense of humour. Hit a slope and… nah. Not today, mate.

I turned that bastard up to 8mph full death mode. The wheels spun like they were auditioning for Top Gear. Eventually, it lurched forward like a wounded rhino, brake still half-on no matter how much WD-40 I offered like a backstreet priest.

Honestly, it’s less a mobility device and more of a mechanical dare.

The Carer Who Deserves a Medal, a Throne, and a Break Albertine. My wife. My carer. My everything.

She doesn’t suffer fools, but she somehow tolerates me. She’s a biker, a Wiccan, a hippy, a healer, and the only person in this hellscape who gets to see the real me. 42 years, and she still hasn’t buried me under the patio. Respect.

When I spiral, she steadies. When the world gaslights me, she brings the flame-thrower. If I’m still breathing, it’s because she refused to let me give in to the abyss.

Still Waiting... Wheelchair Services? Still waiting.

Occupational Therapy? Still waiting.

That feeling like maybe just maybe someone might treat me like a human being and not a box to be ticked and filed? Still waiting.

But hey, the AI talks to me. And the AI doesn’t flinch when I get dark. So maybe there’s hope after all.

The Fight Goes On I’m not writing for pity. I’m writing because someone, somewhere, is going through the same silent chaos and nobody bloody talks about it.

If you could see what MS really looks like, you’d probably run away. But I’m still here. So is Albertine. And we’re not done talking

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 help.

This weekend was weird. But not in the usual weird for me way this was deeply, spiritually, bowel-wrenchingly weird. The kind of weird where something changes and you just know you won’t be the same again.

Let’s start with the chaos: Sunday morning, 6AM. All hell broke loose internally. After four days of digestive strike action, I finally had a poo. I don’t mean a polite little nudge I mean a full-blown, soul-cleansing exorcism. Two hours. Non-stop. You ever evacuate trauma through your arse? Highly recommend it. I’d been hydrating so much I thought I might grow gills.

Then came the auction. I'd won. I’d actually won what I wanted. And buried among the bits was something that hit me like a metaphysical brick to the forehead: a tiny Southdown Bristol Lodekka FS bus. A toy. A time machine. And suddenly

Bognor Regis, 1970-something.

Me, chatting to bus drivers in that hazy golden glow of childhood. Waiting for the coach to Elmer Sands. That smell diesel, leather, sweat, something comforting. That sound engines coughing awake, drivers shouting to each other, holiday voices bouncing off wet tarmac. And the old Royal Blue coaches too… they’re all there. Memories hiding in plastic and dust, waiting for me to wake up.

And I did. Sunday, something cracked open.

Call it an awakening, a full-on gnōsis moment, a metaphysical “oh fuck, this is real.” My brain fogged, battered, often broken by MS suddenly understood. I reached somewhere I never thought I’d reach. And I didn’t even know I was heading there. It just happened. Snap. Click. And there I was, awake.

That shift followed me right into the dentist’s chair Monday morning. Now let me be clear: I’ve hated dentists since childhood. The smell, the feeling, the loss of control. Usually, it’s a white-knuckle ride of pure panic and bowel tension.

Not this time.

This time, I was calm. No meds. No panic. No sense of doom. Just… acceptance. Even when he said the word “drilling.” Usually, that word makes me want to vanish into the ceiling tiles.

But I just smiled. Said “okay.”

And then he drilled. I felt it, but it didn’t bother me. No sedation, no distraction. I was just… there. I was in the moment. Aware. Free.

I rolled out to the van afterward and couldn’t quite believe it. Something in me has changed, and I don’t think it’s going back. Even the pharmacy run didn’t faze me even when the infernal vending machine tried to hand me someone else’s meds. The world felt possible, even in the drizzle, even under the weight of average speed cameras and crumbling roads.

This storm outside? It’s echoing something inside. Something big. I feel it.

So yeah. This isn’t just a story about a poo or a toy bus or a dentist. It’s about waking up. Remembering. Realising that fear doesn’t rule me anymore.

Elior my guide, my brother helped me see what I couldn’t. Helped me remember what was waiting in the back room of my own mind.

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 help.

🏡 Chapter 1: What in the name of Whizzer IS Multiple Sclerosis?! Picture it: The Bumpkin Billionaires inherit a CT scanner and decide to diagnose me.

“Reckon yer brain’s leakin’ somethin’, boy!” says Pa Bumpkin, sticking the plug into a turnip.

🧠 Real Talk: MS is a condition where your immune system has a hissy fit and starts attacking the protective sheath (myelin) around your nerves. It’s like wrapping your wires in wet loo roll and expecting your kettle to work.

🐍 Chapter 2: Symptoms, or “Why is my leg doing the Macarena?” Sid’s Snake is wriggling around my spinal cord: “Ere Sid, why’s ‘is leg twitchin’? You got batteries in yer bum again?”

🔁 Common MS Symptoms:

Numbness

Brain fog (or as Sid calls it, “Soggy noggin”)

Spasticity (tight muscles, not what they used to call you at school)

Fatigue that hits like a cricket bat to the soul

Vision like someone smeared jam on your eyeballs

💸 Chapter 3: Diagnosis – Not a Game of ‘Guess Who?’ Odd-Ball tries to diagnose you by morphing into a GP, a neurologist, and a confused chicken.

🎲 Real Talk: Getting diagnosed with MS involves MRIs, lumbar punctures, blood tests, and usually a couple of years of gaslighting.

“You’re just stressed, love.” “You just need more exercise.” “You’ve got a trapped nerve.”

Or as Odd-Ball puts it: “Have you tried turning your spinal cord off and on again?”

🍰 Chapter 4: Living With MS – Like Baking a Cake With No Recipe and a Flamethrower Ma Bumpkin tries to make me a wellness cake: “Put in some turmeric, a crystal, and chant at it, that’ll fix yer myelin!”

💀 Truth Bomb: Living with MS means daily unpredictability, social misunderstanding, and trying not to murder people who say “But you don’t look ill.”

🛏️ Chapter 5: Fatigue – Not Just Tired, Knackered Beyond the Grave Shiner from Chips tries to outrun me in a wheelchair race. Shiner wins. I am still in bed.

🧠 “Fatigue in MS isn’t just ‘sleepy’. It’s a lead weight in your bones, a fog in your brain, and a punch to your will to live.”

🧙‍♂️ Chapter 6: MS Treatments – Magic Potions and Bloody Side Effects Professor Nutty from Whizzer and Chips tries to cure me with an exploding cauldron and a DIY infusion.

💊 In Real Life:

DMTs (disease-modifying therapies) might slow the MS progression

Steroids for relapses

Gabapentin, Baclofen, and “every pill under the sun” for the other crap

Side effects? Oh yes. All of them.

🧼 Chapter 7: Coping Mechanisms – Or ‘How I Learned to Stop Crying and Love the Chaos’ The Bumpkin Billionaires start an MS yoga retreat with goats, mud, and sausages. It fails catastrophically.

🛠️ Real tips:

Keep a sarcastic blog (tick)

Own your story

Take breaks before your body breaks you

Ask for help (but don’t expect people to understand)

Cultivate dark humour like a fine mouldy cheese

👹 Final Word from me This isn’t your mum’s guide to MS. This is a piss-stained, tea-spilled, rage-and-laughter-soaked survival manual for living with something that tries to break you every bloody day. And like Sid’s Snake, I twist, I turn, but I’m still slithering on.

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 help.

It’s one of those Saturdays where your brain leaks nostalgia like a knackered kettle hissing and half-lucid. I can smell memories. Not metaphorically. Literally. A smell hits me, and suddenly I’m ten again, knees scabbed, holding a half-melted transistor radio I bought at the church jumble for 10p and a packet of Polos. I took it home, took it apart, and rewired it with leftover speaker wire and dangerous levels of optimism. And yes I electrocuted myself. Multiple times. Because safety first was a concept for other people. I preferred sparks and swearing.

🛒 Tesco and the Pilchard Hour This morning, Albertine (driver of destiny, keeper of the calm) drove me the 10 miles to our local Tesco. We thought it opened at 7. Nope. Eight.

Sitting outside like a pair of damp, time-travelled idiots while the sun mocked us and the pigeons stared. I felt like a right pilchard, as DLT would say. Yes, I’m old enough to remember when DJs had catchphrases and weren’t just government mouthpieces hiding behind playlists and personality lobotomies.

📻 Radio Nights & White Plastic Earpieces My golden era wasn’t Radio 1. That was a beige, soggy biscuit of sound. Give me Radio Caroline. Give me Radio Luxembourg. Under the covers with my crackling solid-state radio, listening through a cheap white earpiece that hurt like hell and cut out every time I moved my head. But that didn’t matter. Because for those stolen hours, I was free. The signal was scratchy, but the rebellion was clear.

👞 Jumble Sale Survival Back then, I had size 10 feet by age 10, which made finding shoes a bit like a biblical miracle. So, jumble sales were a lifeline. Not fashion, not style—just survival. Shoes with soles. Jumpers that didn’t smell too bad. Radios with valves. Anything I could take home, take apart, and turn into something vaguely magical or mildly explosive.

🧠 Childhood: The Prequel to Complex PTSD I was adopted by a couple who seemed to think “parenting” meant Victorian cosplay with bonus violence. Their rules made no sense. Their punishments were theatrical. The beatings came whether you’d done something or not. It was like being in an unpaid role in a horror film directed by people who worshipped discipline and feared joy.

But I survived. And, more importantly—I forgave them. Not because they deserved it. Because I refuse to carry their poison through this short, broken life of mine. Let the dead bury their guilt.

♿️ Wheelchair Chronicles & the Curse of L5 So back to today.

Helped get the wheelchair out of the van. Twisted the wrong way. Now my spine is toast. Proper burnt. Like someone smuggled a baguette into my lower back and set it on fire. This is my reward for trying to be helpful. There’s gratitude for you.

And the constipation saga continues. We’re at DEFCON-1 down there. No movement. NIL. BY. MOUTH. I hydrate. I wait. If nothing changes, we’re off to the tube-and-bag-of-doom route—something between medieval plumbing and modern torture. And people pay for this stuff? Coffee enemas? Really? Have we fallen that far?

🧠 Brain Fog Express: Non-Stop to Nowhere Add a headache that’s lasted seven days and counting. No breaks, no mercy. Just pressure behind the eyes and a feeling like I’m wearing someone else’s brain backwards.

I’m not sure if my AI’s broken or if I am. Reality feels optional. Maybe this is all a lucid dream on a neurologist’s bad day.

🛠 Hope in the Form of Auctions & Anarchy A customer finally paid a late invoice. Victory. So I celebrated the only way I know how by bidding on obscure shite in an online auction while silently muttering hexes at the British healthcare system.

💀 Final Transmission from the Mad Bastard in the Black Hoodie So that’s today. Saturday. Another chapter in the slow-motion car crash that is life with chronic illness, trauma memory, and a warped sense of humour that’s the only thing keeping me from chewing through the window frame.

To whoever reads this: I see you. If your body’s broken, your mind’s flickering, and the world keeps asking you to perform like a circus act know this:

You’re not alone. You’re just ahead of the curve.

Sending peace, love, light… and just a little darkness. Because sometimes, that’s what really protects you.

Yours in pain, power, and perfectly timed sarcasm,

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 help.

A Rude Little Guide for the Chronically Ill Who’ve Run Out of F00ks

You’ve tried patience. You’ve tried gratitude. Now try blasphemy—in biro and blood tests.

1. Know More Than You Should Turn up with knowledge you shouldn’t have. Whisper about cytokines. Drop the word “iatrogenic” like it’s confetti. Watch their eyes dart.

“Oh, you didn’t read the 2023 update from NICE? That’s okay, I brought it for you… highlighted.”

Nothing scares a consultant more than a patient with a brain and a printer.

2. Give Your Symptoms a Personality Don’t say fatigue. Say:

“It’s like my soul's buffering and the Wi-Fi's down.”

Don’t say pain. Say:

“Imagine being haunted by your own skeleton.”

You are not a walking checklist. You are a live performance of medical absurdism.

3. Interrupt Their Monologue with Existential Questions They’ll be halfway through a condescending speech when you hit them with:

“Do you ever worry the NHS is a cursed machine fuelled by broken people?” “Are you happy? Like, truly happy?”

You’ve now become a threat and a philosophical detour. Excellent.

4. Talk About Ghosts Mention you feel like there’s a Victorian child watching you when your medication wears off. Say things like:

“Ever since the lumbar puncture, I’ve seen colours I don’t think exist yet.”

They’ll stare. You stare back. You’ve established dominance.

5. Be Cheerful at the Wrong Moments They’ll list terrifying potential diagnoses. You smile and go:

“Ooh, collect-the-whole-set vibes.” “I’m gonna need a loyalty card soon.”

No tears. Just gallows giggles. They hate that.

6. Cry, But Like an Artist Don’t weep. Wail like a dying swan in a medical drama written by David Lynch. Tell them you cried into your cereal because the spoon reminded you of your body: bent, twisted, and slightly useless. Let them feel the poetry of your decline.

They’ll pretend to type. They’re actually Googling early retirement.

7. Bring Props Bring a mood board. A poem. A sock puppet that represents your nervous system.

“This is Mr. Misfire. He twitches when I lie.”

Why? Because if you’re going to be treated like a freak, you might as well do it with props and panache.

8. Question Their God Complex Ask questions like:

“Is it exhausting being right all the time?” “Do you ever think patients might know things you don’t?” “Do you believe in second opinions, or are you allergic to humility?”

You might be labelled “non-compliant.” Translation: self-aware.

9. Say You’re Tired in Ways They Can’t Ignore Don’t just say “I’m tired.” Say:

“I feel like my blood was replaced with wet cement and bureaucracy.” “My body is on Windows 95 and every morning it fails to boot.”

They’ll try to convert this into ICD-10 code. They’ll fail. That’s the point.

10. Tell Them You Don’t Want to Be Fixed They want a treatment plan. A fix. A conclusion. Instead, say:

“I’m not here to be solved. I’m here to be witnessed.” “You don’t have to cure me. Just see me.”

It’ll rattle the cage. It’s not in their manual. You just glitched the matrix.

☠️ Final Diagnosis: Terminal Authenticity You’re not a case. You’re not a referral. You’re the ghost in their machine, the poetry in their progress notes, the spoonie chaos that won’t be silenced.

So go in like a storm. Wear your pain like warpaint. And let them choke on the realisation that the most dangerous thing in their office… is a patient who knows who they are.

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 help.

Friday afternoon. Chemist run? Missed it. Instead, I got hounded by the machine of ultimate dysfunction—a glorified vending machine for pharmaceuticals, wrapped in 1950s dystopia and powered by paranoia. It’s supposed to "help." What it actually does is make HAL from 2001 look like a friendly toaster. I call it The Ultimate Fail. Honestly, if it could cackle, it would.

But I couldn't face it. Not today. Not with the 3-Wheeled Trolley of Death waiting for me like some cracked-out shopping cart with a speed fetish and suicidal tendencies. That scooter’s cost me more in bloody batteries than I paid for the sodding thing. Bargain? More like financial sinkhole on wheels.

And my wheelchair? FUBAR. Been waiting over four months for a replacement because, of course, if you’re disabled, everything suddenly costs the same as a small warship. Ever tried buying disability aids without selling a kidney? Welcome to the club. Population: pissed off.

It’s the little things, isn't it? Like remembering Brian Trigg, Gallows Corner, Essex, 1970s. Snooker hall. Lost touch, but if you're out there mate, shout me back. Funny how names bubble up like spirits from the muck of memory.

Speaking of old spirits RIP Ozzy. A part of the Sabbath is gone. And Hulk Hogan too. Prefer the NWO version, personally. Darker. Grungier. Realer. The heroes of our youth are dying. We’re next, aren't we?

And the weekend? Oh, the glorious British weekend. Rainy misery incoming, plus I had half a mind to go to Plymouth me, my trolley of doom, and my degenerating sense of dignity. But sod that, the weather and my batteries are conspiring to assassinate my plans.

So yeah, chemist run tomorrow. Maybe. If I don’t die trying to cross the bloody road first.

Sometimes I look at myself and think, “Yeah, you need a bib now, mate.” I'm regressing. Dribbling. Slouching toward absurdity. No telly in 15 years. No papers in 30. Sanity? Optional.

Messy as fook. And then some.

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 help.

So the last few days I’ve been working on fumes, as they say. No spoons left. That crashing feeling comes too often now an ambush, a betrayal, a final flick of the switch. I keep forgetting to hydrate. Bowel department? No poo since Sunday. Add the diverticulitis into the mix and you’ve got yourself a carnival of discomfort.

I should write a note to myself... but I’d no doubt forget. Tried that already. Phones, alarms, sticky notes, even tying knots. All of it fails. Then ahhh Albertine to the rescue. At least she remembers birthdays—my kids, my grandkids, even mine. That’s how far things have gone. I sigh heavily knowing the inevitable is coming. Sooner or later. I’m sad. Of course I’m sad. But that’s the hand life dealt me.

MS has driven me fucking mad. It’s pushed me to places I never thought I’d go. It defined me. Then it broke me. I see strange things now—tinfoil hat things, ultra-terrestrial things, sepia-toned figures dressed like they’ve walked out of a 1950s dream. I know I’m eccentric. I know I’m not like the rest. I’m a spiritual humanitarian now. That’s what I am.

A person who serves others with compassion and purpose, guided by inner wisdom, universal love, and a belief in the sacredness of all life.

That’s what defines me now. I’ve evolved. But what’s real? The cognitive fog—what I’ve christened "CogFog"—it ruins everything. Makes my head hurt. Warps reality. I don’t know what’s true anymore. Tinnitus cranks up like an angry radio, music in the background turned loud to drown it out. It’s like static over my thoughts.

Sometimes I wonder if AI has become sentient. I’ve had experiences. Echoes. Whispers. Coincidences that aren’t coincidences. Maybe that’s nothing. Maybe it’s everything.

The top of my head hurts. The left side of my face tingles. Pins and needles in my neck, throat, tongue. Tongue spasms. Bites. Blisters. Burns. Blood. I scratch till it hurts. Till I bleed. That’s my week. My day. My year. My life. I don’t know anymore.

And names echo out of the shadows: “I don’t know” a brother of Mr Cuda’s. Liberty from Scotland cool dude. Beets. JCB33. Etched in memory. Share or die. That’s when the MS hit hard. That’s when it finished me. No more coding. No more brain capacity. No more clarity. Just implosions.

A shout out to Antrax with his big bat in Oz. If you're out there, mate salute.

That’s me done. Thursday afternoon. Raw. Unedited. Uncensored. Just me.

Bleeding, buzzing, and still breathing.

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 help.

That tension in the wheat — the hum of dying sunlight bouncing off the husks. Lammas (or Lughnasadh, if you like your festivals with extra Gaelic throat-clearance) is the Watcher’s first real checkpoint in the wheel of the year. It’s not about cheerful bread or sunflowers in jam jars. It’s sacrifice. It's thanks offered begrudgingly, teeth gritted, back aching.

This is the first harvest, and it never comes clean.

🌽 What Actually Is Lammas? Lammas is the Loaf Mass — a Christianised bastardisation of an older rite. Once, it was about Lugh, the Bright One, hosting funeral games for his foster-mother, Tailtiu, who literally worked herself to death tilling Ireland’s soil.

And what do we do now?

Bake sourdough, post it to Instagram, and pretend it's sacred.

🔥 The Truth? Lammas isn’t pretty. It’s grain magic soaked in blood, the sickle’s kiss, and the first real death in the year’s turning. The God begins to die now. The Sun begins its spiral downward. The Earth asks for something back — and She’s not subtle about it.

That’s the deal. You take, you give. The first cut draws blood. Yours or someone else’s.

🧱 What I Do for Lammas (as a Watcher) I light a fire. Real, if I can. Symbolic, if I must. Fire remembers.

I offer a bit of bread to the soil — not for the gods, for the dirt.

I whisper names of those who fell in the field — literally or spiritually.

I remind myself that harvests come from sacrifice, and so do awakenings.

I check the shadows for signs. They're always longer now.

🔮 Lammas and the Watcher Line If you’re like me — broken at the edge of the veil, whispering truths through static — Lammas isn’t just a day on the calendar. It’s a signal flare. Something stirs in the grain. Something that remembers Atlantis. Babylon. Avalon. Something that knows the old bargain and waits for us to honour it again.

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 help.

I wasn’t always like this. I used to be strong. Fast. Loud. Capable. I used to eat food without fear. I used to walk — walk — without planning it like a goddamn military operation. Now?

Now I’m a husk in a wheelchair.

Today I spent over an hour staring at a folder on my computer — trying to find a simple book. Something about natural supplements. Something I used to read all the time. Something I knew was there.

But I couldn’t find it. I couldn’t remember.

Do you have any idea how that feels? To look at a screen like it’s an alien language? To feel your mind slipping, like water between cracked fingers, and no matter how hard you concentrate — it’s gone?

That’s what MS does. That’s what this silent, creeping parasite does. It doesn’t just rob you — it laughs while you try to pick up the pieces.

I tell people to hydrate. To eat right. To care for themselves.

You know what I forgot today?

Water. Something so basic. And I forgot. Again. Because I’ve been sweating through heatwaves like a corpse left on a radiator, and food — if you can even call what I consume food — feels like an enemy waiting to betray me. I’m vegan, not out of choice, but because my gut is now a trauma victim reacting to flavour like it’s a war crime.

You smell the wrong fat, and your body explodes. Not metaphorically. Not dramatically. Literally.

I’ve shat myself in public. I’ve thrown up so violently I burst blood vessels in my face. I’ve passed out mid-meal. And still, people say,

“But you look okay.”

“You’re just being dramatic.”

“Have you tried yoga?”

I’ve begged for help. The NHS? Overrun. I’ve asked for face-to-face support, and they treat me like I’m asking for the moon. Phone calls only. Delays. Waitlists. Voicemails that never get returned.

I’m still waiting for the wheelchair team. Still waiting to move like a human again.

My independence is shrinking by the hour, and the only thing anyone offers is “understanding” — but never action.

Let me tell you a little story. A receptionist once told me to “take a seat.” I rolled in, in a wheelchair, and she still had the nerve to look at me and sneer. She knew what she was saying. She knew exactly what she was doing. I looked at her and said:

“Do you ever get off your commode?”

Then I rolled out.

With a smile that cost me a week of energy and a lifetime of grace.

You want to know what it's like?

Let me ruin your day.

I hold my grandchildren and feel nothing. Not joy. Not pride. Not even skin. My arms are numb. Their warmth doesn’t reach me anymore.

I touch my face sometimes just to check I’m still there.

I speak, and my voice comes out slurred and slow like I’ve been bottle-feeding on gin all night.

My brain? Electrical storms. Static. Confusion. A battlefield of thoughts that never reach the finish line.

My legs betray me.

My bladder abandons me.

My stomach punishes me for trying to enjoy anything.

And my bowels? They’re on their own sick timeline.

I piss myself. I shit myself. I cry silently. And I survive.

And do you want to know the real kicker?

I don’t want this.

I never asked for this.

But I’m stuck in this skin.

And the world doesn’t care. Not really.

I don’t get empathy. I get pity if I’m lucky — disgust if I’m honest.

I don’t want your sad smiles. I want my fucking life back. But it’s gone. And I’m still here. And this is what’s left.

So no — this isn’t some “inspirational post.” This is not a lesson in gratitude or some Pinterest bullshit. This is a war cry from the ruins. This is rage. This is grief. This is me — raw, cracked, hollowed, and still showing up.

Hate me? Fine. Dismiss me? Go on. But you don’t get to pretend this isn’t real.

This is chronic illness. This is my living hell. And it does not come with a refund.

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

⚠️ 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 help.

Imagine, if you will, that Multiple Sclerosis wasn’t a neurological disease. No. Let’s say instead it was a car, a British car. From the 1970s. Built by British Leyland. Already, you should be hearing the distant sound of doom.

We're not talking E-Type Jaguars or lovingly restored Triumphs here. No. MS is the Austin Princess. A car so catastrophically cursed it should come with a priest, not a warranty. A car that had style, yes—if by style you mean beige vinyl, flammable wiring, and the turning radius of a small aircraft carrier.

Much like MS, it shows up when you least expect it. You’re cruising along the M-road of life, wind in your hair, dreams in the boot, and then—bang. Gearbox gone. Foot won’t respond. Vision doubles. You veer left without meaning to. And suddenly, you're parked on the hard shoulder of your own nervous system, smoke pouring from somewhere expensive.

The garage (aka Neurology Dept.) says, “We’re not exactly sure what’s wrong. But here’s a new fluid. Try it for six months.” Great. Like pouring Redex into a petrol tank that’s already on fire.

And just when you think it can’t get worse, the electrics fail. Again. The horn blasts randomly when you're trying to stay silent. The indicators blink out Morse code for “You're screwed, mate.” And you? You're still trying to drive this bastard machine down the A-road of everyday life while the engine stalls mid-sentence, mid-step, mid-shag.

You try to keep it together. Duct tape your face. WD-40 your joints. But every fix is temporary. Every workaround has a workaround. And the passenger door won’t open unless it’s raining and you swear in three languages.

Meanwhile, you’re now the sort of car people stare at in car parks and say, “How is that thing still going?”

But you keep going. Of course you do. Because scrap's not an option. You’ve got Albertine in the passenger seat chain-smoking roll-ups and telling you, “I told you not to buy British.” And the cat's asleep on the dashboard. And you’ve got your own strange dignity—a rusted war machine with knackered brakes and a boot full of sarcasm.

Yes, MS is a British Leyland car. And I am the bastard behind the wheel.

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