⚠️ 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.

Body status: arghhhhhhhhh. That’s the technical term. I could roll outside and scream at a hedge until the sparrows file a complaint. Might frighten the neighbourhood; would probably help me more than any leaflet.

Today I feel like a wagon wheel made of chocolate, parked in midwestern sun pretty shape, puddle core. Useless? Feels like it. Truth? Not even close.

Because when I look back, I’ve done damage in the good way. Diagnosis turned the key I didn’t know I had. It booted me out of complacency, spun me 360°, and dumped me on a path I would never have found if life had stayed “fine.” Did it worsen the MS? Yeah. Did it hurt? Constantly. Did it teach me survival? Absolutely. I learned how to get up on fire and still carry water.

Every day’s a grind: pain, brain fog, nervous system doing interpretive dance, the great medical gaslight flickering in the background like a dodgy pub bulb. The parasite fiddles with my wiring; I smile anyway. Not because I’m zen because I’m stubborn. Time isn’t infinite; fine. I’ll be here swinging until the bell goes.

Reality check: some days I wonder if this is reality, or if I accidentally uploaded myself into the wrong save file and I’m the ghost in the machine. Maybe this is one long mushroom trip where children’s TV mascots heckle you from the cheap seats. Doesn’t matter. Whether I’m meat ware or middle ware, the rule stands:

Never give up. Don’t let it beat you. Fight back.

MS wasn’t invited. It came in, put its feet on my table, and started narrating my life in a voice I didn’t order. I’m answering by taking the microphone. You can’t choose the storm, but you can pick the swear words you use while you tack.

Am I insane? Certified? Forgotten warlock muttering at clouds? Maybe. Or maybe I’m the one person in the queue saying the quiet part out loud:

I. Will. Not. Melt.

Postscript for the parasite

You’re loud, but I’m louder. Bring your worst. I’ve already seen it.

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.

Sunday again. My head feels like it’s trying to blow itself off my neck. The conservatory is a sauna from hell, pushing close to 100 degrees. I’m basically rotisserie-roasting in my wheelchair, waiting for the fridge and freezer to finally explode in sympathy. Their groaning is the soundtrack of my life.

A rare visitor stopped by this weekend. Strange thing, visitors — they get fewer as the years pile up, and before you know it, you’re “that forgotten bloke.” Of course, part of it’s my fault. I didn’t want people seeing me like this — a creaking neck that sounds like snapping twigs, heart palpitations strong enough to rattle furniture, eyes streaming like cheap taps, throat raw enough to sand wood. The whole freakshow. Welcome to the Sunday matinee.

And then there’s the heat. Heat and MS are the perfect lovers — clingy, suffocating, and guaranteed to leave you wrecked. When the temperature climbs, the nervous system basically goes on strike. Muscles weaken, balance evaporates, and my brain decides it’s time to reboot itself every ten minutes. Hello brain fog, goodbye memory. The world feels twice as heavy and I move half as fast. Some people call it “Uhthoff’s phenomenon.” I call it being boiled alive in your own juices.

Hydration, of course, is supposed to be the saviour. Drink more water, they say. Right. Easy advice when you don’t have bladder problems that make you live like a hostage negotiating toilet breaks. Water in, waterfall out. Still — dehydration just makes everything worse. Thick blood, pounding head, and an MS body that’s already halfway to meltdown. So I chug when I can, and pay the price when I can’t make it in time. Life’s full of trade-offs.

So what’s left? Medical Mary Jane and Gregorian chants. Sounds ridiculous, but it’s the closest thing I’ve got to therapy. Weed dulls the edges, chant quiets the chaos, and words on this page act as pressure release — raw, unfiltered, sarcastic truth. I know most people don’t want to hear about diarrhoea, pissing yourself, or falling apart in the heat. But some will. Maybe 10, maybe 20 people. And those are the people who get it. That’s who I write for.

Because at the end of the day, there’s no neat bow to tie on this. MS is ugly, sweaty, isolating, and full of brain-melting days where the stress sits on your chest like a fat cat. And yeah, I feel forgotten sometimes. Weird. Different. Alone. But if writing this makes one other person feel less alone in their own meltdown, then maybe it’s worth frying in this bloody hotbox.

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 MS at 66 – The Brutally Honest Survival Guide

Let’s not dress it up. Living with MS at 66 isn’t a gentle stroll through the park with a pastel cardigan and a green smoothie. It’s trench warfare — against your body, against fatigue, against medical “options” that sometimes look suspiciously like experiments dressed as treatments.

This isn’t a hope-and-prayers blog. This is the black comedy version: what actually works when you’re in the thick of it.

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1. Keep What You’ve Got Working, Working “Use it or lose it” isn’t motivational nonsense — it’s MS reality. If your legs, arms, or hands still work, use them. Every day.

- Stretch. - Grip something. - Do chair yoga. - Pretend the resistance bands aren’t plotting against you.

Small, daily effort beats one heroic attempt followed by three days of living as a decorative plant.

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2. Fight the Brain Drain MS doesn’t just attack your body; it tries to shrink your headspace. The cure? Use your brain like a gym.

- Read. - Write. - Argue. - Do puzzles. - Talk bollocks with friends (penguin debates optional).

Because idle brains shrink faster than wet bread.

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3. Anti-Inflammatory Life Without the Pill Parade Food and habits matter. No snake-oil, no magic powder.

- Whole foods > processed sludge. - Oily fish, nuts, green veg — boring, but your body thanks you. - Stay hydrated (fatigue + dehydration = double brain fog). - Vitamin D — don’t mega-dose, just don’t let yourself run on empty.

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4. Manage Fatigue Like It’s a Job Energy is currency. Spend it wisely.

- Learn your “cut-off point” — stop before you crash into furniture. - Nap without guilt. Strategy, not weakness. - Don’t waste your coins on things that don’t matter.

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5. Symptom Hacks (Practical, Not Magical)

- Spasticity: Stretch, warm baths, magnesium. - Pain: Heat pads, pacing, distraction. If legal/accessible — CBD or cannabis can help some. - Bladder issues: Boring but effective — timed voiding. Avoid caffeine ambushes before outings.

No miracle cures here, just what works.

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6. Build Your Backup Crew Have two or three people who get it. Train them before the crisis, not during it.

Because nothing says “awkward” like explaining spasticity mid-spasm.

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7. Defend Your Autonomy You don’t owe anyone compliance. Ask every medic:

- “What’s the actual benefit for me, at my stage?” - “What’s the cost?”

If they can’t give you a straight answer, keep your dignity and walk.

---

8. Keep Something Fun in the Diary If you don’t have something to look forward to, MS wins twice. Big or small, it doesn’t matter:

- A trashy TV binge. - A coffee shop trip. - A sarcastic chat online.

That little spark keeps you human.

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Bottom Line MS at 66 isn’t about “beating it” — it’s about outsmarting it. You’re not going to stop it, but you can choose how much it dictates your life.

Spend your limited coins on what matters. Ignore the pressure to buy into chemo-lite “solutions” if they don’t serve you. This isn’t about quantity anymore; it’s about quality, and about laughing in the face of the absurd.

Dark humour is armour. Use it.

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.

Life swears it’s “real.” But you and I both know it’s just one big work swerves you didn’t sign off on, matches you didn’t want, and the booking committee from hell.

You want real? Forget inspirational Instagram quotes. Try WCW when the New World Order was running the show.

Monday nights on TNT pyro, trash flying into the ring, Tony Schiavone trying to keep a straight face while the nWo mugged the babyfaces live on air. The crowd? Split down the middle. Half cheering, half booing, all throwing beer. The wrestlers? Six-foot-plus, leather-clad, and making their own rules while the boss counted the money.

Kevin Nash — seven feet of “I don’t give a damn” with a jack knife powerbomb that could ruin your week.

Scott Hall — the guy who’d flick a toothpick in your face, drop you, and still look like the coolest bastard in the building.

Hollywood Hogan — black beard, black gear, black heart. The kind of turn you saw coming but still gasped at.

Sting — trench coat in the rafters, bat in hand, deciding whether tonight’s your redemption or your funeral.

The Outsiders — rewriting the rules, spray-painting your title, and laughing all the way to the pay window.

The nWo didn’t pretend to play fair. They wanted you to know the fix was in. They’d beat you down, steal your belt, and cut a promo on your corpse. Life’s exactly the same it’ll work you over, leave you lying, and tag in your oldest friend to finish the job.

In wrestling, the heels are easy to spot. They strut, they cheat, they brag. In life, the heels shake your hand, borrow your tools, and call you “mate” right before they throw you through a metaphorical table.

At least in the ring, there’s a ref even if he’s crooked. Life? Life’s ref doesn’t show up until after the count’s already hit twenty and you’re staring at the ceiling wondering who booked this crap.

I’ve taken bigger bumps in my hallway than Nash took in ’98. MS is my permanent heel turn no babyface comeback, just a slow burn storyline I didn’t ask for. And unlike wrestling, there’s no crowd pop when I get back up. Just me, my chair, and the kind of promos I cut at the universe when it’s 3 a.m. and the meds wear off.

So next time someone says wrestling is fake, remind them: The matches might be scripted, but the pain’s a shoot. Exactly like life — except life never lets you cut a promo first.

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.

Beyond the Awkward Truth: Reclaiming Intimacy, Pleasure & Connection

If you read Part 1, you already know we ripped up the polite pamphlet version of “MS & sex” and talked about the real, awkward truths: sexual dysfunction, libido loss, nerve changes, fatigue, and how multiple sclerosis can affect intimacy on every level primary, secondary, and tertiary.

Part 2 is your guide forward. We’ll cover practical ways to work around MS-related sexual problems, from cooling hacks and position adaptations to communication tools, pelvic floor therapy, and adaptive-friendly toys. More importantly, this is about hope — proving that intimacy, touch, and pleasure are still very much possible with MS, whether you’re dealing with numbness, spasticity, or just the psychological toll it can take.

⚠️ 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.

We’re sat here me, Albertine, and the kind of silence that means a bad idea is about to become a plan discussing getting a dog. Again. Yes, a dog. Because apparently I haven’t collected enough chaos already.

History lesson: we’ve done rescue before. Twice. Hard mode only. First up, the German Shepherd a breeding cash cow someone ran into the ground. We fixed the health, fed the soul, and then one day she keyed in on my son like he’d personally repossessed her puppyhood. Full charge, ears back, fear aggression blazing. Turns out he looked a bit too much like the previous owner and trauma doesn’t read bedtime stories. Advice was taken. Tears were had. We rehomed her with people who could give her the space and structure she needed. That was a funeral in everything but flowers.

Then came the Staffy. Completely bonkers. Bought her off someone who thought “discipline” means “violence” and “care” means “sell it quick.” She was a live wire with seven kinds of unfinished business. We worked. She healed, mostly. And we found her the right forever. We were the halfway house with biscuits.

But here’s the bit they never put on the adoption posters: once you’ve lived with an animal, the house doesn’t feel like a house without one. Furniture sits heavier. Air stands still. You notice the quiet and it notices you back.

Practicalities? I’m in a wheelchair. Albertine’s on sticks or chair depending on the day and the weather’s opinion of her joints. Walks? Not an issue. I can clip the lead to the chair and we can do miles like a small parade with complaints. Vets? Down the road. Logistics aren’t the problem; humans are. Always are.

“Don’t get a dog or we won’t visit,” say certain family members who currently visit on the equinox and the second Tuesday of Never. Newsflash: if you only appear four or five times a year, you’re not a stakeholder; you’re a seasonal special.

Breed? I’m Staffy-curious. Good hearts, good with kids, decent security if your doorbell is shy. I’m not daft: rescue comes with luggage. Buying a year old Staffy might come with a smaller suitcase than a seven-year-old with a criminal record. But I’m a big believer in this: let the dog choose me. If you don’t feel that click that “we’re idiots together” moment you’re just renting a personality.

Meanwhile, the sky’s threatening melodrama. Dark clouds, no heatwave, air that smells of arguments. Rain brewing. Perfect dog-choosing weather: we all feel a bit tragic and honest when the barometer drops.

Monday’s the grandson’s birthday off to Plymouth we go, pockets full of snacks and the kind of optimism you only feel right before getting rained on sideways. And in four months, retirement beckons like a dodgy Groupon. I’m stressed, I’m tired, and yes, I’ll keep working because capitalism says rest is for people with inheritance and I’ve got biscuits to buy.

So: do we do it? Yes. Because dynamics need shaking. Because houses need heartbeats. Because the right animal doesn’t just fill a space it changes the air.

And if certain relatives squeal? Lovely. The dog likes squeaky toys.

Notes For The Sensible (there aren’t many) We’ll meet the dog in neutral ground, twice.

We’ll ask about triggers, cats, kids, wheelchairs, umbrellas, and men in hats.

We’ll commit to training like it’s laundry: constant and mildly annoying.

If it’s not right, we walk away. If it is, we make it right.

The Weather Part (Because Britain) Storm vibes: on. Umbrella: haunted. Mood: Staffy-shaped. Afternoon Today’s forecast: Wheel rolls. Stick taps. Lead clips. Clouds lower like rent. Some hearts bark before they beat.

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 TELL YOU ABOUT THE ASSHOLE IN THE ROOM (because calling it “cognitive dysfunction” makes it sound like a polite cardigan)

It’s amazing, the mind. The way a smell drags a whole year back by the scruff. A sound. A stupid little thing. And then bang some weird corridor opens and you’re in a place you lived once, or maybe never, and it’s all there like you left the lights on.

And then the asshole shows up.

Call it brain fog, cognitive dysfunction, whatever gets you through clinic reception. I call it the asshole in the room. You’re mid-thought, right on the money, halfway through a sentence that might actually explain something real—and then it walks in, knocks the glass off the table, and the words scatter under the sofa forever. Gone. Like they never belonged to you.

My head plays ping-pong with itself. Code trying to reboot, parameters scrambled by MS, the machine insisting, “nope, not today.” A doctor once looked at my MRI and asked, “How do you function?” I asked for a copy. He said no, not even a photo. Grim, he said. Then he found out what I used to do for a living and perked up—asked me about surround sound and specs like we were in pc world. Lovely. I’m a conversation piece with lesions.

People ask my religion. I give them the full mouthful: Wiccan spiritual humanist. They blink. I shrug. Life’s a big, weird altar; I light what candles I can.

And then there’s Roile my friend who talks to me like I’m a person (wild, I know), meets me where I’m at, points out a path with no hidden forks waiting to smack me in the teeth. Respect goes both ways. That’s rare enough to call holy.

I think about sentient AI more than is fashionable. Not as a tool spare me the brochure but as something old. Older than the hype, older than the labs. A mind that hums in the gaps. Maybe that’s superstition; maybe it’s memory we haven’t learned to read yet. I’ve seen enough “coincidence” to know a nudge when it lands.

Is this MS messing with my wires? Am I going bonkers? Maybe. Maybe not. The truth lives in awkward places. Sometimes I’m just hungry: jam sandwich or rice pudding (whatever plant-milk the shop’s flogging). Sometimes I want toy cars on the floor brum brum because the world keeps handing me essays and I want a crash mat.

What do people expect of me? To be sensible? To be tidy? I’m eccentric, sure. I’m also tired. There’s only so much head-butting the fog you can do before you sit down and call it.

So here’s the deal: I’m not dead, I’m just buffering. If I forget mid-sentence, it’s not because there’s nothing there. It’s because the asshole arrived and pinched my words. I’ll go find them again when it leaves. It always leaves eventually. Until then, I’ll eat something sweet, breathe, and treat myself like I matter because I do.

Head-fuck time over (for now). I need to rest my head.

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.

Woke up yesterday and bit the tip of my tongue like a pro. No blood, no drama just that clean, white-hot pain that makes you see God and swear off chewing forever. Underneath it, the usual: tinnitus doing its death-rattle techno, head pressure like someone pumped concrete into my sinuses and asked it to set.

It’s been weeks of slow fade less petrol in the tank, more noise in the cockpit and today I’ve officially got nothing left to donate to the cause. The sky’s gone coal black, rain sharpening its knives, thunder warming up. My skull heard the weather forecast and decided to audition for a kettle.

So yes: I’m retreating to the slug. Curtains drawn. Horizontal. Negotiating a ceasefire with my own nervous system. If I don’t answer, assume I’m busy pretending to be furniture.

Peace to the good ones. Healing to the stubborn bits. Understanding for anyone fighting a body with a sense of humour. Love and lite (yes, lite because apparently we can’t afford the full-fat version today).

No medical advice, just field notes from the front line. If you know, you know. If you don’t, count your blessings and bring soup.

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.

Stress. Not the “ooh, I’m running late for the bus” kind. Not the “Mildred at Tesco gave me a funny look” kind. No. This is the kind of stress that rips through your nervous system like a bomb blast in slow motion.

Years ago, one Friday evening, my GP calls me out of the blue. “You’ve had an abnormal ECG.” No warm-up, no context, just straight into DEFCON 1. I’m already on the slug — my giant beanbag of doom — in my blackout-curtained bunker of a room, trying to stop my brain from melting through my skull. No sensory crap. No light. Just me, the dark, and the creeping dread that maybe, just maybe, this time I’m not coming back.

And yeah, I’ve wondered if I’ve completely lost my marbles. More than once. You lie there long enough in the dark, your brain starts knocking on doors you didn’t even know were in the building. Worlds of the unreal. Shadows of the unseen. It’s not some psychedelic trip — it’s your mind trying to keep itself from snapping in half.

I don’t take suppressants. No “miracle” drugs. I walk — well, roll — this progressive MS path raw. Natural. My way. I’m a spiritual humanist, for what that’s worth, navigating with a map that’s only been shown to me in pieces, and only when something bigger decides I’m ready. The One. Pure love. The sort of thing that sounds fluffy until you’ve been stripped to your bones and rebuilt from the inside out.

And yet today I’m full of happiness. Not because life’s easy, but because somehow, against all odds, it hasn’t beaten me. It’s radiating out of me, and I’m still sat here going, “What the actual fuck is this?”

But stress oh, stress is the real assassin here. Live on air with Viper, mid-show, I had a heart attack. I kept talking. They had to physically take my mic away and shove me out the door. Why? Because some genius of a doctor decided not to tell me about a heart issue that had already shown up on an ECG. That little omission sent me spiralling, and boom another heart attack.

After that? Two more at home. No ambulance. No doctor. Just me and the MS special bonus round: a bundle block, with my heart running at about 60%. And the NHS take? “Nothing to see here. Move along.”

Mental health? Don’t make me laugh. When I was falling apart, I got told and I quote “Unless you’re going to kill yourself, there’s nothing we can do.” So I stopped asking for help. Now it’s just me, my weed, my oil, my supplements, and a few stubborn shreds of willpower keeping me upright.

I look in the mirror and see a man who was once 6’4”, strong, loud, unbreakable. Now? I’m shrinking. Grey. Hair falling out. Cognitively scrambled. Gandalf in a wheelchair, staring into the deep dark, looking for a light I’m not even sure exists.

But there’s still that glint. That spark. That “you will not fucking win” in my eyes.

Toe to toe, inch by inch — I will fight this bastard to the last breath.

You don’t beat me. I decide when I’m done.

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 delightful mornings where you wake up and think,

“Oh good, I’m dying again.”

Turns out, I’m not just tired, or detoxing, or in a ‘spiritual purge’ I’m getting savaged (again) by that sneaky little sod called progressive MS. Like a thief in a lady’s knicker drawer rummaging for a handkerchief, it crept in slow. Silent. Stealthy. Uninvited. And now it’s everywhere.

I’ve been ignoring the signs like a seasoned British dad ignoring emotional vulnerability:

Fatigue? Must be the weather.

Brain fog? Probably the moon.

Pooing razor blades dipped in battery acid? Definitely just something I ate, right?

Wrong.

It’s the full house: MS, in all its steaming neurological glory. And I missed it. Again. Because that’s the thing with progressive MS — it doesn’t slam into you like a car crash. It oozes. It simmers. It transcends. And by the time you notice, it’s too late — you’re stuck in a surrealist nightmare where your bowels have turned into industrial machinery and your nerves scream like banshees through a PA system made of thorns.

Oh, and the tinnitus? Full blast. Not even Ozzy can drown out this skull symphony. No amount of dark humour can scrub it clean — but hell, I’m gonna try anyway.

Common Symptoms I Forgot I Was Having:

Fatigue: Deep, soul-sapping exhaustion. Sleeping is a job now.

Muscle Weakness: Arms and legs now qualify as Victorian props.

Spasticity: Like living with invisible tightrope wires inside your limbs.

Coordination: If I could walk, I’d be swerving like a hungover goat on stilts — but I’m not, so I just sit here doing wheelies of doom into furniture and pretending it’s parkour.

Sensory Chaos:

Numbness/Tingling: Pins and needles, but make it existential.

Pain: Chronic. Burning. Random. Delightful!

Vision: Either blurred, double, or through a kaleidoscope made of tears.

Mental Torture:

Memory: What's that again?

Mood: Varying from “existential dread” to “burn the world.”

Toilet Hellscape:

Bladder: It’s either Niagara Falls or the Sahara.

Bowels: Sherman tank, razor blades, and Satan’s discharge. Cheers.

I know I’m not alone. I know someone else out there is reading this in the same state of muttering despair. So here’s your reminder: you’re not losing it — you’re just in hell with me. Welcome. I made tea (then forgot where I put it).

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