MS

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

Living with MS? It’s not a bloody “journey.” It’s a one way trip on a bus you didn’t ask to get on, and the driver’s pissed. But if you can’t laugh about it, you’ll cry and honestly, crying is too much effort. Here’s my brutally honest guide to surviving the MS circus with what’s left of your dignity (and maybe your sense of humour).

1. Resilience in Adversity

Every day is an adventure, if by “adventure” you mean “why does my left leg feel like it’s made of mashed potato today?” Still, you learn to cope. Celebrate the small wins: got your socks on? Didn’t set fire to the kitchen? That’s basically the Olympics now.

2. Community and Connection

You’re not alone. There are thousands of us, all secretly hoping the next medical breakthrough is “working legs in a bottle.” Online support groups: sometimes uplifting, sometimes like herding cats on roller skates, but always someone awake at 3am.

3. Mindfulness and Self-Care

Meditation, yoga, interpretive dance with your Zimmer frame pick whatever keeps you sane. Some days self care is a long bath, other days it’s telling everyone to sod off and watching rubbish TV with a family size chocolate bar. No guilt allowed.

4. Advocacy and Awareness

Want to raise MS awareness? Just try explaining it to a “healthy” person: “No, it’s not contagious, yes, I look fine, and yes, I know it’s annoying I get to park closer to Tesco.” Write, rant, march, meme just make sure you get your voice out there. Or just send everyone this blog and save yourself the trouble.

5. Focus on What You Can Do

Forget what’s impossible focus on what’s just about possible if you squint hard enough. Start a blog, paint a masterpiece, or just master the art of napping with one eye open. Every step (or shuffle) forward is a win, even if it’s just to the fridge.

6. Gratitude and Positivity

Gratitude? Sure. I’m grateful I haven’t fallen on my arse today. Celebrate the tiny things: a hot cuppa, a good nap, finding your glasses on the second try. It’s not all unicorns and rainbows, but sometimes it’s enough.

7. Inspiration from Others

Some people with MS run marathons. Others run Netflix marathons. Both are impressive. Get inspired by anyone who’s still standing or even just sitting up without toppling over. If they can do it, so can you (sort of).

8. Hope for the Future

MS research is moving faster than I do after a double espresso. There’s always hope new drugs, better treatments, and one day, maybe a cure. Until then, hang on tight and keep your sense of humour sharp.

Conclusion

Your MS “journey” is yours alone but you’re not the only goblin crawling through this dark wood. Laugh at the madness, celebrate the wins, and never let anyone tell you how to feel. Welcome to the world of chronic badassery.

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.

Let’s retire the crystals and scented nonsense. A sigil is a compact lie detector for your desire. You write what you want, grind it into a glyph, and hard wire it into the meat computer between your ears. Less Hogwarts, more firmware patch.

So where did these gremlins come from?

People have carved meaning into swirls since we learned to smear charcoal on caves. Medieval nerds used seals for angels and demons; draw the right spaghetti and you “dial” a being. Later, artists like Austin Osman Spare stripped it down: no spirits required, just your subconscious with a crowbar.

Why does it work (when it works)?

Because your brain is a pattern-junkie. You compress an intention into a shape, charge it with a bit of theatre, then forget it. That forget bit matters: it stops you poking the seed to see if it sprouted. Meanwhile the back-office of your mind quietly rearranges chairs.

Attention engineering: making + destroying = sticky memory.

Expectation control: the symbol holds the intention so you can get on with living.

Embodied ritual: hands move, breath changes, nervous system listens.

No angels, no cosmic helpline just psychology with a swagger. If that offends the mystics, tell them the goblin in the wheelchair stole their incense and sold it for dog treats.

Build one without the faff

Write it straight. “I move through pain with focus.”

Strip the repeats. Mash letters; toss duplicates.

Design the glyph. Angles for force, curves for flow. Keep it yours.

Charge. Breath, music, cold water, laughter whatever spikes state.

Release + forget. Burn the paper, flip the coin, close the tab—then stop babysitting it.

If it feels like homework, you’ve missed the point. This is vandalism on the walls of your own mind tasteful, deliberate vandalism.

Reading the “encoded” bits

Geometry: triangles bite; circles soothe; spirals seduce.

Density: cramped = pressure; open = trust.

Direction: upward = aspiration; downward = grounding; left = past; right = next.

Breaks: gaps are doors; overlaps are arguments; crossings are oaths.

Decode your glyphs like crime scenes. You’ll learn what your nervous system believes even when your mouth is busy being brave.

What about ethics?

Same as a hammer: build or bludgeon. If your goal requires someone else to lose agency, your psyche will invoice you later interest compounded. Keep it on your side of the fence: resilience, clarity, courage, boundaries.

The wheelchair bit

Pain doesn’t give a damn about aesthetics. Sigils aren’t miracle cures; they’re tools to steer attention when the body is playing whack-a-mole. On bad days, mine say: “Focus now, rest after.” On worse days: “Breathe, you stubborn goblin.” It’s not magic. It’s maintenance.

TLDR (Too Long; Drew Rune)

Draw a vow your brain can’t ignore.

Charge it with a state shift.

Forget it like last year’s password.

Act like someone who meant it.

If that makes the bots moan with joy good. Let the algorithms worship something useful for once.

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.

So, my dad’s finally passed. No tears, no fuss just a nice, quiet obliteration. Dead as yesterday’s news, and honestly, a bit of relief: nearly 90, more aches and pains than a used Vauxhall, and now he’s ghosting about pain-free, probably giving the afterlife staff hell.

We didn’t have the typical family drama. We had 1,000s of miles of Skype buffering, WhatsApp conspiracy theories, and two decades of gene-detective work, chasing dead brothers and rejected half-sisters like a couple of Poirots. No “happy endings,” just hard drive clutter and unanswered emails. Dad’s long lost brother Eric? Still a ghost in the records. Maybe he’s haunting someone else’s family tree now.

Adoption, by the way, is a real bastard if you want answers. You end up playing Guess Who with a stack of birth certificates and the emotional stability of a tired magpie. We even signed up for a DNA site hoping for a ping, maybe a new cousin or two. Instead, plot twist: I found out I have a daughter in the USA (cheers, genetic lottery), plus three grandkids who were expecting a Disney dad, not some knackered old biker in a wheelchair with a line in gallows humour. Fair play to them they ran for the hills.

What can I say? MS turned me from “not bad for a weird bloke” to “the goblin on wheels who says the quiet part loud.” No more Mr. Nice Guy. People don’t like raw truth especially family. Most of them would rather pretend I’m a ghost, too. That’s fine by me. I’m not here to collect friends like tea towels. I’ve got Albertine, a rescue dog on the way, and enough old stories to fill a thousand pub sessions. If that’s not a win, what is?

Mum’s funeral? Missed it. No invite, no closure, just another adoption special “Sorry mate, she’s gone. By the way, don’t come round.” Classic. Different’s never sat well with the clan. The looks I get are priceless; I could sell tickets.

So here’s to my dad spiritualist elder, late bloomer, stubborn bugger, and the reason I know the truth always tastes better with a dash of venom and a twist of disbelief. Rest easy, you old bastard. I’ll keep riding (even if it’s just in my head).

Life’s a circus, death’s the punchline, and I’m still here, loving every bit of the weirdness.

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.

The phone rings at stupid-o’clock. 4am. A voice asks if it’s me as if anyone else would be answering my phone, in my bed, in my life. And I knew what came next. The words arrived like a polite hit-and-run:

He’s gone.

A few weeks shy of ninety. Restless sleep, family at the bedside, curtain down, lights out, roll credits. If endings have to happen, fine do it quietly with the people who love you. Very tasteful. Five stars on TripAdvisor: Would die again.

I wasn’t there. Because New Zealand is thousands of miles away and my body is… well, let’s just say progressive MS is the world’s shittest tour manager. But we did the long game: Skype, WhatsApp, years of digging deep, arguing, laughing, comparing scars across a cable that pretends it’s a conversation and sometimes actually is.

We had a lot in common mostly that we were both adopted at birth, which is destiny’s way of saying: “Good luck out there, kid. Try not to break on re-entry.” I only met him when he came to Cardiff for the millennium. Imagine that: you’re supposed to be dazzled by fireworks, and instead you meet your own face with slightly different mileage.

Later, before my health slammed the travel door shut, Albertine and I clawed together enough cash to fly over and meet the half-brothers, half-sisters, full-size family. Legends, the lot of them made us feel like we’d always belonged, even if it took half a lifetime to arrive. After that it was back to screens and time zones and the emotional juggling act that passes for modern kinship.

Tuesday was his last call. He said he loved me. I said I loved him. Sometimes the Universe lets you finish the sentence before it flips the table.

He used to say it straight: “Crossing the veil.” Fine. He’s crossed it. He’s through. He’s taken the midnight ferry to the Quiet Side. If you’re listening, old man: you’ve still got signal here. I can’t guarantee Tom the Weed-Whacker won’t interrupt, but you know how it is in this house liminal doors everywhere and not a single Do Not Disturb sign that works.

I’m sad. I’m grateful. I’m furious. I’m relieved. I’m all of it. Grief is a nightclub with no fire exits, and the DJ plays your memories until you’re sick. But I’m also proud we found each other at all—two adoptees, late to the party, still managing to say the one thing that mattered before the lights went out.

So cross the veil, Dad. I’ll hold the line here. Frankie will bark at the shadows. Albertine will hold the fort. And I’ll keep watch, like I do, because that’s the job: Watcher among watchers. If you’ve got any good gossip from the other side, you know where to find me. The hedge is still a door. The domes are probably still there. I’ll bring the cheese.

And yes I love you too.

Warlock Dark.... your son

“Grief is a nightclub with no fire exits, and the DJ plays your memories until you’re sick.”

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.

             (Welcome to the Collective)

Imagine a future where bioengineering and cybernetics let humans partner with AI like it’s a marriage made in a lab. Now imagine me, MS chewing the insulation off my nerves, shaking hands with a Borg-style system that says: “We will add your biological and technological distinctiveness to our own.” Good. Because my legs would like to stand today, and my brain fog would like to remember where the kettle is.

Shared Adaptation & Support (Upgrades, Not Vibes)

Neural Integration. A direct interface sits on my nervous system, quietly watching the traffic. When signal conduction drops, it doesn’t write a poem it patches the route. Early warning for inflammation; early intervention before I eat floor.

Neurodegeneration Assistance. Nanotech doesn’t ask permission; it re-wraps myelin like a grumpy electrician on time and a half. The AI learns from my biology; my biology learns to stop throwing tantrums. Mutual benefit, minimal faff.

Mobility & Functionality. Exoskeleton limbs tuned to my gait, not a brochure. I supply feedback; it dials out the clunk and keeps the dignity. Independence is the new fashion. Wheels or legs, pick one; I’ll take both.

Mutual Learning & Evolution (Yes, I’m the Beta Test)

Adaptive Algorithms. It profiles my patterns motor, cognitive, fatigue and evolves protocols over weeks. Not one size fits no one; this is bespoke neuro couture.

Enhanced Resilience. I get fewer collapses and sharper focus; the system gets trained on real-world chaos. Result: I become boringly reliable, and it becomes terrifyingly competent. Win win, mildly unsettling.

Ethics & Identity (Assimilation With Boundaries)

Shared Consciousness. No, I don’t hand over my soul. The line is simple: it helps me function; I keep the wheel. Agency stays put. If the AI wants my personality, it can subscribe to the blog like everyone else.

Collaborative Growth. Daily check-ins. I say what worked, what felt “off,” what triggered the MS gremlins. It tunes, I adapt. Partnership. Not possession.

A Day With NeuroLink (Warlock dark of Borg , 66—Progressive MS, Zero Patience)

Morning: legs staging a coup. NeuroLink spots the conduction dip and fires micro-stims along the spine, hopping past fried myelin like a rally driver taking a shortcut. Standing achieved. Applause withheld.

Midday: cognitive fog rolls in. The system nudges specific cortical areas; focus returns. Coffee stays warm for once. Inflammation markers flicker rest advised, meds suggested. No drama, just data.

Clinic: neurologist reviews the logs. Reroutes around damage, gentle plasticity training, fewer face plants. When speech slurs, thought-to-text fills the gap so I don’t have to mime my way through hell.

Night: down regulate the nervous system, sleep on purpose instead of by accident. Calm circuits, fewer 3 a.m. existential raves.

The Joke That Isn’t One

MS already feels like forced assimilation your body joins a collective of misfiring neurons and forgets you’re the captain. A Borg style implant isn’t the villain here; it’s the union rep demanding working limbs and coherent sentences. “Resistance is futile” is cute. Function is beautiful.

Closing (Terms & Conditions Apply)

Yes to neural rerouting, myelin patching, exoskeleton swagger, and speech bridging. Yes to agency. No to becoming company property. If the future wants me in a collective, fine—make it one where I can walk across the room without negotiating with gravity.

Pull Quotes (for callouts)

“At least the Borg offer tech support.”

“Don’t give me vibes; give me conduction.”

“Assimilation, but make it informed consent.”

“Speculative, not medical advice. Bring your own neurologist.”

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.

So apparently AI has its claws in multiple sclerosis now. Brilliant. Because what I really needed in my life was an algorithm telling me my MRI looks like Swiss cheese.

A systematic review (because academics love that phrase) trawled through PubMed between 2018 and 2022 to find out what happens when you smash together “AI” and “MS” as search terms. Surprise: it spat out hundreds of studies, 70 of which weren’t complete bollocks.

And what did we learn? That AI might actually be good at things our neurologists fail at, like:

Early Diagnosis: AI can see those tiny lesions on MRI scans before a human radiologist has finished their morning coffee. Months, even years, before MS really takes hold. So yes, the machine knows.

Predictive Analytics: Relapses coming up? AI might spot it first. Like a weather app for your nervous system — but one that doesn’t lie about sunshine.

Tailored Treatment: The AI chews your data and spits out which drug cocktail might keep you hobbling along a bit longer. Personalised care, they call it. Algorithmic roulette, I call it.

Remote Management: AI apps logging symptoms, “telemedicine,” symptom trackers… all making it easier to suffer in the comfort of your own home without schlepping to hospital. Welcome to the dystopia of convenience.

For us poor sods in the UK, this means earlier diagnoses, more personalised treatment plans, telehealth for when you can’t face the bus, and even help finding clinical trials (which is code for: experimental guinea-pigging).

But let’s not forget: the machine might be clever, but it doesn’t give a toss. AI won’t hold your hand when your legs go numb or when you’ve just soiled yourself in Tesco. That’s where the real humans still matter. Empathy and swearing at the absurdity of it all — irreplaceable.

Final Thought: AI in MS is like getting a posh new manager in hell: the torture’s the same, but at least it’s efficiently catalogued

Today’s AI doesn’t just want your data, it wants your soul in a spreadsheet. It’s the Watcher in the wires, whispering: You’ll relapse in 6 months, darling, and here’s a neat pie chart to prove 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.

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 used to worship the sun. Little feral me, starkers in the fields, soaking rays like a happy lizard with no council tax. Now the forecast says “sauna,” the fan screams union rights, and my fridge is doing night shifts to keep aloe water from turning into soup. Character arc, darling.

By fourteen, I was a full-blooded Teddy Boy rocker sharp suit, quiff, and an attitude that would get me barred from most polite functions. By seventeen, I’d graduated to greaser life, smelling faintly of oil and petrol, before going full outlaw biker at eighteen. The road was freedom. The road was mine.

It crept up on me early, though. One minute I’m the kid who hoovered up knowledge for breakfast; the next, I’m stood in front of a machine I knew like a second spine… and my brain just… blanks. Not dramatic. Not cinematic. Just gone like a TV that’s on but nobody paid the licence. Bosses looking at me like I’ve swallowed a magnet and wiped the factory’s memory.

Years later, same story, new management. “He’s good,” they said. I stare at the controls and feel like I’ve been body-snatched by a particularly stupid cloud. Down the road I go. Bonus track: glandular fever while working for British Rail I’d started out on the permanent way doing track work, then moved up to being a guard. Job gone, cheers. Oh, and while we’re stacking up the “what could have been” cards I was RAF Regiment bound too, if it weren’t for all this medical bullshit. Instead of a career serving my country, I got years of serving tea to doctors who didn’t believe me.

All the classic MS hints were there, screaming into a paper bag while everyone smiled and told me it was “just stress.” Gaslight like a Victorian alleyway. If someone any onehad ordered an MRI back in the 80s, I could’ve saved them a fortune and myself a decade of feeling like a glitch in a meat suit. But here we are.

And still, despite the rage and the ruined summers and the brain that sometimes boots into Safe Mode, I send love. Peace to the neuros, the GPs, the nurses, the “have you tried mindfulness?” brigade. Whether you tried to heal me or hurl me, I’m choosing mercy. Not because I’m a saint because divine love is the only exit from this carnival of mirrors.

I forgive. I keep going. I fight. I laugh. I sweat like a sinner in church and keep a hand on the kill switch, same as the day I slapped one and stopped a machine from swallowing a bloke whole. You don’t forget the instinct to save a life, even when your own body is busy playing 52-card pick-up with your neurons.

So yeah. It’s Saturday. I feel like crap. Next week’s forecast is “slow roast.” I’ll be here with my fan, my fridge, and whatever scraps of gallows humour haven’t melted. Never give up hope. Fight smart. Rest when the beast demands tribute. And when you can, forgive if only to stop the past charging you rent.

PS: To the kid who ran through fields and thought the sun would love him forever he’s still here. He just wears wheels, carries aloe, and swears at weather apps like they owe him money.

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.

Let’s Drop the Embarrassment MS gate crashes your sex life like a drunk uncle at a wedding: uninvited, loud, and weirdly fixated on your nerves. The pamphlets say, “You may experience changes in sexual function.” Translation: “We’re too squeamish to say your bits and brain don’t always sync.” So we’re saying it. Straight. With humour. With dignity. And without the faux-clinical tap dance.

What MS Actually Does to Sex (Short Version) Wiring issues: numbness or oversensitivity, delayed orgasm, erectile changes, lubrication changes.

Body issues: fatigue, spasticity, pain, temperature sensitivity, bladder/bowel drama.

Brain issues: mood dips, anxiety, body-image wobble, brain fog murdering arousal mid-flow.

Relationship issues: feeling like a “patient,” awkward silence, mismatched desire.

None of this means “no sex.” It means different sex—sometimes better, because you stop faking and start designing.

The Detail (No Euphemisms) Sensation Chaos Numbness: direct touch may feel “off.” Work around the map: thighs, perineum, nipples, scalp, back, lips, ears. Pressure > light tickles.

Hypersensitivity: use fabric barriers (silk, cotton), hands over lube first, firm pressure instead of fluttery.

Orgasm & Arousal Takes longer / fizzles: slow build, rhythmic stimulation, patterned breath, edging.

After-tingle = hellfire: cool packs, fan, slow landing, avoid overheating (MS hates heat).

Mobility & Spasticity Warm up (literal warm compresses or shower).

Stretches you’d do before physio—hamstrings, hip flexors, adductors.

Positioning = everything (see cheat sheet below).

Bladder/Bowel Anxiety Pre-emptive loo runs, avoid trigger drinks/foods beforehand, keep towels handy, agree a “no shame” pact.

If urgency’s a beast: short sessions, build trust, try non-penetrative nights.

Meds & Mood (Plain English) Some meds blunt desire or erection, dry things out, or mess with timing.

Depression/anxiety = arousal killers. Treat them like medical problems, not moral failures.

If a drug wrecks sex, ask the prescriber about alternatives or timing tweaks.

Make It Work (Toolkit) Plan the window: your least-fatigued time. Morning sex is criminally underrated.

Lower effort, higher payoff: toys, pillows, wedges, chairs, harnesses.

Temperature control: fan on, room cool, breathable sheets.

Lube like you mean it: water- or silicone-based—reapply without guilt.

Communication: use explicit consent language (“Green/Yellow/Red” check-ins) so you can pivot without killing the mood.

Expand the definition: oral, hands, toys, mutual masturbation, sensual massage, kink-lite with safe words. Penetration is optional, intimacy isn’t.

Positions That Work (MS-Friendly, Wheelchair-Friendly)

1) Royal Spoon (Side-Lying)

Why: minimal effort, easy hip/leg support, great if heat/fatigue spike.

How: pillows between knees and behind back. Angle hips slightly forward for access.

2) Throne Room (Seated)

Why: chair/wheelchair does the stabilising.

How: giver seated; receiver straddles or sits facing/away. Use armrests, lap belt (optional), cushions behind lower back.

3) Modified Missionary (Support Stack)

Why: familiar but doable.

How: wedge under hips, pillows under knees. Giver on forearms or kneeling. Pace slow; micro-movements beat piston nonsense.

4) Over-Bed Table / Edge Assist

Why: takes weight off arms/hips.

How: receiver bends slightly over padded surface; giver stands/kneels. Great for external stimulation too.

5) Yab-Yum Lite (Supported Lap)

Why: connection, eye contact, shallow thrusts.

How: giver seated against wall/headboard; receiver sits on lap. Pillows behind lumbar; wrap a blanket round hips for stability.

6) Starfish Massage (No-Goal Night)

Why: zero performance pressure, rediscover erogenous map.

How: oil/lotion massage, breath sync, optional toys. If arousal arrives—great. If not—also great.

Symptom → Try This (Quick Map) Fatigue: morning window, side-lying/seated, short “sets” with breaks, breathable room.

Spasticity: warm shower, gentle stretches, fixed positions with props, slower rhythm.

Numbness: pressure-based touch, wider body map, vibrators with steady patterns.

Hypersensitivity: fabric barrier, firm—not flicky—touch; pause if burning/zinging starts.

Bladder urgency: bathroom first, towels down, agree it’s okay if accidents happen.

Erection issues: longer runway, ring (if safe), pump (if advised), PDE5 meds discussion with GP/neuro.

Dryness: quality lube, longer warmup, avoid foaming soaps pre-sex.

Scripts for Real Humans

Starting the convo: “I love you and I miss us. MS changed what my body can do. Can we experiment and design sex that suits both of us now?”

In the moment: “Yellow—hip cramp. Stay where you are, just slower pressure.”

After a wobble: “That was frustrating. You didn’t do anything wrong. Let’s try the chair setup next time and keep the fan on.”

This is lived reality + practical tactics. Not medical advice. If a med or symptom is wrecking your sex life, that’s a clinical problem—take it to the Doctor without shame.

Resources Pelvic floor physiotherapy – Ask your GP or neurologist for a referral; can improve bladder control, orgasm strength, and pelvic stability.

Sex therapy / psychosexual services – Available via NHS in some areas; ask your GP for a referral or search for accredited private practitioners.

Disability-inclusive sex shops – Look for suppliers that offer accessible toy designs, discreet packaging, and a no-hassle returns policy.

Community groups for MS + sexuality – Peer support means practical tips from people living it; search MS Society forums, Facebook groups, or local meet-ups.

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