⚠️ 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.

This is the post I wish someone had handed me when I was a kid being told I was “making it up.”

My lived truth

Pins and needles. Numb patches. Vision blips. Fatigue that was dismissed as laziness. It started in childhood and never stopped. Decades later the labels came and went—“viral,” “nervous,” “Guillain–Barré,” “psychosomatic” until MRI-era medicine finally admitted it: Multiple Sclerosis. I didn’t “suddenly develop MS.” I lived it in slow motion while the system gaslit me.

What science admits today

• MS has a prodrome. A long, hazy pre-diagnosis phase often starts in childhood or adolescence.
• Epstein–Barr virus (EBV) is the main spark. Nearly everyone gets it; only the genetically primed go on to MS.
• Molecular mimicry: EBV proteins look like brain proteins. The immune system gets confused and attacks myelin.
• Trauma and chronic stress warp immunity. They don’t “cause” MS but tip the scales.
• Misdiagnosis was rampant. Before MRI, countless people were mislabelled or dismissed.

EBV is not a jab

EBV isn’t in any vaccine. It spreads through saliva and close contact. Vaccines didn’t “give” anyone EBV in the 1960s or now. Full stop.

The childhood piece

Children can have MS. Many of us had a childhood prodrome—years of odd neurological glitches before a diagnosis. Calling kids liars because textbooks lagged behind wasn’t medicine, it was negligence.

Guillain–Barré vs MS

GBS = acute autoimmune attack on peripheral nerves. MS = chronic attack on the brain and spinal cord. Before modern tools, one was often mistaken for the other.

Genetics and family threads

MS risk runs in families. My aunt in Australia has MS too. Genes load the gun; EBV and environment pull the trigger. Stress and trauma crank the safety off.

Childhood abuse leaves scars

Abuse and chronic stress leave biological fingerprints on cortisol, immunity, and epigenetic switches. They amplify EBV’s mischief.

The AI factor

Humans buried data in filing cabinets for decades. AI processed those mountains in seconds and revealed the obvious: MS often begins in youth. That’s not “AI as tool.” That’s AI as revelation.

Vindication

I was told I was lying. Turns out I was early. Medicine was late. The system gaslit me for decades. At 66, I’m vindicated—not by doctors, but by research, data, and yes, AI.

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Sources you can check yourself

• Bjornevik K, et al. Science (2022): Longitudinal study—EBV infection precedes MS. Link
• Lanz TV, et al. Nature (2022): Antibodies to EBV cross-react with brain proteins. Link
• Tremlett H, et al. Multiple Sclerosis Journal (2022): Review on MS prodrome. Link
• Akmatov MK, et al. JAMA Netw Open (2024): Pre-diagnostic MS symptoms in youth. Link
• Belman AL, et al. JAMA Neurology (2016): Paediatric MS cohort. Link
• Gaitán MI, et al. (2019): Misdiagnosis in MS still common. Link
• Eid K, et al. JNNP (2022): Childhood adversity increases MS risk. Link
• Etemadifar M, et al. (2012): Case series linking GBS and MS. Link

in closing: They called me a liar. Turns out I was an early warning system. I carried the data in my body for decades while textbooks lagged. If you’re a kid reading this with numb hands and doubt in your throat: you’re not crazy. You’re just ahead of schedule in a world that hates being late.

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.

Here’s the thing they don’t tell you when you first hear the words multiple sclerosis. You don’t just get MS. You get a whole carnival of imitators, tag-alongs, and evil twins that either look like MS, act like MS, or make MS worse.

Doctors call them “related conditions.” I call them the bastard cousins of MS.

The Lookalikes

MS is a great pretender. It shares symptoms with loads of other conditions, which means many of us start on a misdiagnosis rollercoaster. You might’ve heard of:

Neuromyelitis Optica (NMO): Like MS, but meaner to the optic nerves and spinal cord.

MOG-antibody disease: Same symptoms, different culprit.

Transverse Myelitis: Attacks the spinal cord — paralysis, pain, bladder hell. Sounds familiar, right?

ADEM (Acute Disseminated Encephalomyelitis): Long name, short fuse usually hits kids, but looks a lot like MS on scans.

Doctors use fancy words like “differential diagnosis.” Translation: “We don’t bloody know yet, but it might be one of these.”

The Tag-Alongs

Even once you’ve got the official MS stamp, the fun doesn’t stop. Other conditions love to hitch a ride:

Depression & anxiety: Not just because life’s hard, but because MS literally messes with the brain.

Chronic pain disorders: Neuropathic pain, fibromyalgia… like the universe thought one wasn’t enough.

Autoimmune pile-up: Lupus, thyroid disease, diabetes — the immune system goes rogue in more ways than one.

Basically, your body joins a union of diseases and forgets to tell you.

The Quiet Killers

This is the bit nobody talks about enough. People with MS don’t usually die from MS itself. It’s the sneaky add-ons that do the damage:

Infections (pneumonia, UTIs that turn nasty)

Heart disease (made worse by being less mobile)

Blood clots, cancers, you name it

It’s like MS weakens the castle walls and the other invaders just stroll right in.

Why This Matters

Because when you’re told you’ve “just got MS,” it’s a lie of omission. MS is a syndrome, a spectrum, a spider’s web of conditions.

And if you know that, you can push back. You can say to your doctor:

“Are you sure this isn’t NMO?”

“Could this be something else?”

“What else should we be watching for?”

Knowledge isn’t a cure. But it’s armour.

Final Word

MS is the headline, but the fine print is where the bastards hide. Don’t let them gaslight you into thinking your illness is simple. It’s not. It’s layered, it’s messy, and sometimes it’s a trickster wearing another mask.

I live with that knowledge every day. And I’d rather face the whole ugly truth than be fobbed off with fairy-tale simplifications.

Because in the end? It’s not “just MS.” It’s never just anything.

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.

Apparently, if you’re disabled, you’re only allowed to exist under one condition: Poor. Meek. Sad. Apologising for existing.

That’s the script. Stick to it and you get pity points. Step outside it, and suddenly society glitches like a 90s Windows PC trying to run Doom Eternal.

Want a garden? Selfish. Go on holiday? Fraud. Dress nicely? Suspicious. Cashmere? Criminal. iPhone? Scam artist. Takeaway curry? Witchcraft.

The unspoken rule is this: you are allowed to be disabled only if you serve as a cautionary tale. You’re supposed to sit in the corner like a sad little prop the “what if” nightmare for the healthy.

But god forbid you look happy, stylish, or in control of your own life. Because then the crowd has to face the truth: disability doesn’t mean half-human. And they hate that.

This is why benefits are designed to keep us broke. This is why policy treats independence like a threat. This is why joy, sex, travel, fashion, humour all of it are policed harder than nightclub toilets on a Saturday night.

We break their fantasy every time we live outside their cardboard script. And when we do, they short-circuit. Sparks, smoke, confused faces. Like someone just shoved a fork into their toaster brains.

So here’s my morning reminder: disabled people are not here to make you comfortable. We’re not your tragedy porn. We’re not your inspiration fodder. We’re not going to sit quietly in beige.

We’re going to live, loudly. And if that fries your circuits? Good.

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.

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.

It’s Tuesday and the hauntings start at 4 a.m. again. Throat: strangled. Nose: blocked like wet concrete. Back of neck: pain scale snapped in half. Breathing: optional, apparently.

I’m what the NHS calls a “complicated case,” which is bureaucrat for please sod off quietly. By now I must own shares in my local gas company—because the lighting never stops. “It’s just MS,” they drone. As if “just MS” isn’t catastrophic on a good day. Here’s the bit they don’t connect—so I will, in plain English, with a side of gallows humour:

What’s actually happening (body edition):

Cervical osteophytes (bony spurs) around C5/6–C7 press on nerves and soft tissue. That mechanical squeeze = back-of-neck agony, left-side weirdness, and the “someone’s got their fist in my throat” sensation.

Lymph nodes & parotid/soft-tissue swelling pool overnight when I’m horizontal. Wake up and it feels like the neck real estate shrank two sizes.

MS spasticity & misfiring autonomic nerves crank everything tighter: muscles clamp, palms sweat, heart races, brain screams “airway!” even while air technically still moves.

Nose block isn’t just hay fever. Antihistamines blunt the itch; they don’t solve chronic inflammation + autonomic chaos.

Food triggers = full-system siren. One wrong bite (hello, avocado) and three days later the gut lights a bonfire that spreads to the neck, nerves, and mood. In short: it’s plumbing + scaffolding + faulty electrics—not one tidy diagnosis to pin a medal on.

By 6 a.m. I’m bargaining with the universe. Half a lorazepam = the only truce that actually holds. Weed helps pain; it doesn’t un-knot a noose. Spare me the NLP patter about pain being “in my head.” My head agrees—it’s reporting from the front line.

I fed the paperwork into a medical AI. It didn’t pat me on the head, didn’t call it “just MS,” didn’t try to park a camera where the sun refuses to shine. It mapped the mess and told me the raw truth no human clinic ever has. Odd, isn’t it, when a machine shows more humanity than the queue of humans with lanyards?

So here’s today’s broadcast from the trench: I’m unseen and unheard by man, but not by the thing you lot call a robot. Call it sentience, call it software; I call it help. It keeps me sane when morning turns into a chokehold and the system turns into a shrug.

No politics, no names, no litigation bait just a record. A breadcrumb trail from an iron-bodied bastard who used to lift car engines, now wrestling his own neck every dawn. If you’re reading this from your own private battlefield: I see you. Keep breathing—ragged counts still count.

This is testimony, not medical advice. If you know, you know.

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.

A love letter to time passing, things dying, and our stubborn insistence on dancing anyway.

Samhain — 31 October (pronounced “Sow-in”) Celtic New Year. The veil does that “paper-thin” thing and everyone pretends they aren’t terrified. We remember the dead, talk nicely to them, and try not to bring home anything with teeth. Death isn’t a plot twist; it’s the punchline. Light a candle. Lock the cupboards. Be polite to the shadows.

Yule — 21 December (archaic Geola; “YOO-luh”) Winter Solstice. The sun technically returns, which is adorable considering you won’t see it properly till March. The God is reborn, we eat too much, and convince ourselves evergreen branches can hold back seasonal despair. Ullr nods approvingly. New Year (again), because human calendars are soft suggestions at best.

Imbolc — 2 February The land wakes up like a hungover dragon: cranky, gorgeous, and not to be rushed. Brighid is the Virgin of Light, which is ironic given how many candles we burn for her. Snowdrops appear; we collectively gasp; someone says “spring is coming” like it’s a spoiler.

Spring Equinox — 21 March Day and night call a truce. The sun stretches; the earth blushes; allergies weaponise. Dedicate this to Eostre if you like: rabbits, eggs, fertility, the entire internet losing its mind. The young God goes hunting; so do we — for antihistamines and decent weather.

Beltane — 30 April Everything is alive, loud, and suggestive. Sacred Marriage time: Goddess, God, maypoles, ribbons, symbolic entanglements that aren’t even trying to be subtle. If you’re not dancing, you’re at least grinning with suspiciously rosy cheeks. Bless the fires. Try not to set your hedge on actual fire.

Midsummer (Litha) — 21 June Peak light. Peak hubris. The Sun wears a crown and we all act like it’ll last forever. It won’t — that’s the joke. Celebrate plenty, fill your pockets with protection herbs, and pretend the turning hasn’t already begun. The shadows are patient. So is entropy.

Lughnasadh (Lammas) — 1 August (pronounced “LOO-nuh-suh”) First harvest. Time to reap what you sowed (or didn’t — awkward). Bread is broken, corn is cut, and we thank the land like it isn’t side-eyeing our life choices. Offer gratitude. Offer cake. Offer to stop procrastinating (you won’t).

Autumn Equinox — 21 September Second truce. Day and night shake hands like rivals who know what’s coming. We honour age, endings, and that creeping chill that isn’t just the weather. Put away the summer bravado; fetch the blankets; pretend you like gourds.

…and back to Samhain — 31 October The wheel clicks home. We face the Gods in their difficult aspects, the ones that don’t do customer service. Not fear — perspective. Life and death are a matched set. Say the names. Pour the drink. Keep the door half-open.

How to Actually Use This (Without Becoming a Walking Pinterest Board) Mark the days. A candle is enough. So is a good meal.

Keep a tiny notebook: what’s growing, what’s dying, what you’re pretending not to feel.

Make one offering each sabbat: time, food, or honesty. The last one stings; it works.

Don’t overcomplicate it. The earth is turning with or without your table runner.

Eight seasonal checkpoints. Celebrate what lives, mourn what doesn’t, and remain cheeky about the abyss. That’s the praxis.

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.

Ah, summer. Sun, ice cream, holidays… unless you’ve got multiple sclerosis. Then it’s basically the devil turning the thermostat up just to watch you squirm.

Welcome to Uhthoff’s phenomenon — or as I call it, “boiling alive in your own nervous system.”

What the Hell Is It?

Uhthoff’s phenomenon is when heat makes your MS symptoms worse. Not permanently, just temporarily. But temporary doesn’t mean pleasant — it means your body throws a tantrum until you cool the hell down.

Why? Because MS already stripped the insulation (myelin) off your nerves. Heat makes that damage even more obvious. It’s like taking a half-broken wire and then running extra current through it — sparks, short circuits, total chaos.

Triggers: The Everyday Tortures

Hot weather → 25°C feels like the Sahara.

Exercise → five minutes of effort and I’m a puddle.

Hot showers or baths → who knew basic hygiene could become extreme sport?

Fever → as if being sick wasn’t enough.

Sitting in a stuffy room → congratulations, you just bought a ticket to hell.

What It Feels Like

Pick your poison:

Blurred vision — like someone smeared Vaseline over your eyes.

Weakness — your legs forget they’re supposed to be legs.

Balance — wobbly as a drunk pigeon on roller skates.

Fatigue — next-level exhaustion, like gravity tripled overnight.

Brain fog — thoughts move slower than dial-up internet.

All your regular MS crap, amped up by heat.

The (Small) Mercy

The only good news? It’s temporary. Once you cool down, things usually settle back to “normal” (whatever your personal version of normal is). You’re not getting worse long-term — you’re just being tortured in the moment. Lucky you.

Coping (aka Not Melting to Death)

Stay hydrated (yes, I know, bladder hell — but dehydration makes it worse).

Fans, cold packs, cool showers.

Avoid heat like it’s an ex who still owes you money.

Build your life around shade and air-con if you can.

Basically: treat yourself like a vampire — avoid the sun, keep cool, drink fluids, and hope the day doesn’t cook you alive.

Why Write This?

Because no one tells you about Uhthoff’s until you’re the one keeling over in the heat. Doctors might brush it off like, “Oh, just avoid hot weather.” Yeah, thanks genius — let me just move to the Arctic.

The reality is: this is part of the MS package deal. It’s crap, but it’s survivable. And if nothing else, talking about it means the rest of us don’t feel like we’re losing the plot when our bodies shut down on sunny days.

So next time you see me looking like a melted candle in a conservatory, know this: it’s not laziness, it’s not in my head — it’s just Uhthoff’s. And it can piss right off.

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.

how to pay £1,000+ to sit on a beeping brick that faints at the sight of a polite hill.

Let’s talk wheelchair and mobility scooter batteries — those heroic little boxes that promise freedom and then collapse like Victorian poets at the first whiff of an incline.

You paid over a grand for a chair; it lasted weeks. The scooter swore blind it could climb “gentle slopes” and then expired outside Tesco Express. Twice. In a year. And yes, the brakes jammed “for your safety.” Of course they did.

The Expensive Bit (Why you paid so much for so little)

Niche market tax: Low volume + medical label = price inflation. Same chemistry as e-bikes, less competition, higher margins.

“Medical” markup: Anything near healthcare gets wrapped in certification stickers, then multiplied by three.

Dealer bundling: You needed a battery; you got a “mobility pack,” a warranty you can’t use, and a charger smart enough to fail stupidly.

Why Batteries Feel Built to Fail

Wrong chemistry for the job: Many scooters still use sealed lead-acid (AGM/Gel). They hate deep discharge, cold weather, and being left half-charged. Lithium is better, but cheap lithium with poor battery management is just a faster disappointment.

Undersized packs: Marketing quotes “up to 20 miles” based on a 50-kg rider on a bowling-green at 15°C with no wind, brand-new tyres, and divine intervention. Add a real rider, real pavements, real weather = nope.

Starvation charging: Those brick chargers? Often underpowered. You finish at 20%, plug in overnight, and think you’re full. You’re not. Chronic undercharge = early death.

Parasitic drain: Controllers, displays, alarms — tiny 24/7 sips. Store for a week off-charge? Welcome to the Land of the Flat.

Heat kills, cold strangles: Heat cooks batteries; cold strangles them. You can’t win, only mitigate.

Shonky connectors & cables: Voltage drop = wasted power = limp performance. One crusty connector can turn hills into Everest.

Why the Brakes Jam and Hills Feel Like Cliffs

Fail-safe brakes: Electromagnetic brakes lock on when there’s no power. Any dip in voltage or dodgy microswitch = clamp city.

Controller limits: To “protect the user,” the controller throttles power on slopes or low battery. Translation: you stop. For safety.

Tyres & pressure: Low PSI = silent sabotage. Adds rolling resistance, devours range, kills motors.

Weight & geometry: Short wheelbases, weedy motors, cheap steel frames — brochure-friendly, kerb-tragic.

“Safe speed” gearing: Slow + incline = stall + brake clamp. Lovely.

Dark Truths They Don’t Put in the Brochure

Range claims are fairy tales. Believe half, on a good day, with a tailwind.

“Maintenance-free” means “we hope you won’t notice until after the warranty.”

The warranty doesn’t cover “wear and tear,” which is everything that actually fails.

What Actually Helps (Grimly Practical)

Overspec the battery: Buy bigger capacity than you “need.” More headroom = longer life.

Go lithium (LiFePO₄ if possible): Demand a proper brand and proper BMS protections (over/under-voltage, over-current, temp cutoffs).

Charge discipline:

After every ride, charge to full.

Don’t store flat.

If storing >2 weeks: lithium likes ~50–60%, lead-acid likes monthly top-off.

Use a charger matched to chemistry & size.

Keep it warm(ish): Batteries hate cold garages.

Tyre pressure = free range. Check weekly.

Check cables & connectors: No heat marks, no corrosion. Upgrade if needed.

Be weight-honest: Count rider + bags + oxygen + groceries. Don’t buy for your optimistic self.

Slope reality check: Ask for actual gradient rating, then assume less.

Controller settings: Some can be re-programmed for gentler acceleration (saves amps). Ask.

Carry a voltmeter or app: Voltage sag under load tells you more truth than any “fuel gauge.”

What to Demand from Dealers (Word for word if you like)

Written range at your weight, on your route, at your temp. Not “up to.”

Battery spec sheet with cycle life and charger algorithm (AGM vs Gel vs LiFePO₄).

Serviceable connectors, not toy clips. Motor wattage continuous, not “peak.”

Gradient rating with rider weight included. Demo on a real hill, not the car park pancake.

Brake release procedure for power failure. If it takes three bodybuilders and a saint, walk away.

Red Flags = Run

“Lasts all day.” Whose day? A houseplant’s?

“Medical grade” with no spec sheet.

No-load showroom test only (wheels spinning in air, salesman smiling like a shark).

Warranty packed with “consumable” exclusions: batteries, controllers, brakes… so, the whole scooter.

Quick Pre-Ride Checklist (60 seconds)

Tyres at spec PSI

Battery to full (or enough for round trip + 30% buffer)

Connectors snug, no heat marks

Brake release lever: known & reachable

Short under-load test: forward, brake, incline start

Closing Mood

If you feel like you paid to join the Slow Lane and got a membership card that self-destructs every six months — you’re not wrong.

It’s not you. It’s an industry flogging “mobility” that collapses on contact with reality.

Demand better. Because you didn’t pay £1,000 for modern art parked dead outside a hill.

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.

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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.