⚠️ 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.

Three a.m. and my legs are iron bars. I’m awake not because of a dream, but because my own body has turned into a torture rack. Spasticity they call it. Clinical word, clean and tidy. In reality it’s a bloody vice clamped round your muscles until you want to scream.

What it actually is: spasticity means the muscle tone is cranked up to the point where any movement meets resistance . It isn’t “just stiff legs” or “tense muscles” it’s misfiring wiring. MS strips the insulation (myelin) off nerves, so the “relax” signal never makes it down the line. Muscles seize, jerk, lock, and sometimes kick out without warning.

Lived reality:

Waking with calves twisted like a corkscrew.

Trying to stand and finding your knees welded shut.

A jolt through your thigh like your body just sucker-punched you.

Nights lost to a body that refuses to sleep.

The so-called toolbox:

First line: baclofen, tizanidine, diazepam, dantrolene—sedating, imperfect, but sometimes the only rope you’ve got .

If those fail, the UK’s NICE guidelines say offer a 4-week trial of THC:CBD spray (Sativex) for moderate to severe spasticity . That’s the first cannabis-based medicine ever licensed here.

When it’s brutal, intrathecal baclofen pumps drip the drug straight into your spinal fluid. It works. It’s invasive. It’s not offered nearly enough .

Exercise and movement help stop muscles chaining up , but let’s be clear: stretching alone won’t magically fix spasticity .

Triggers that fan the flames: infections, fever, overheating, tight clothes, constipation, pain, stress, fatigue, even a full bladder . Everyday stuff that flips a switch and makes your body lock.

Why it matters: spasticity doesn’t just steal mobility—it steals sleep, dignity, spontaneity. It turns daily life into a constant negotiation with your own muscles. That’s not “just another symptom.” That’s a thief.

References (for readers who want the receipts)

NICE NG144 (2019): Cannabis-based medicines in MS

Cochrane review (2024): Cannabinoids and spasticity

AAN guideline: Oral anti-spasticity meds

UK MS Society: Exercise reduces spasticity

New evidence: stretching not a cure-all

Intrathecal baclofen: long-term safe and effective

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.

I’m sat here waiting for an email about my impending dog acquisition a blue Staffy, ideally female, spayed, two to four years old, preferably capable of tolerating my questionable music taste and my powerchair’s death-rattle. Partner in crime (metaphorical, calm down, officer). If luck behaves for once, we’ll be doing miles me in the chair, her with ears like satellite dishes, both of us pretending we’ve got our act together.

I’ve trawled rescue sites and breeder pages like a raccoon in a bin and found exactly three things: (1) everyone wants a Staffy, (2) the good ones vanish faster than my patience, and (3) every “available now!” looks suspiciously like “available yesterday, sorry, already gone.” Still hope’s a stubborn little weed.

Sleep has become a rumour. Nights blur into days; days smell like old coffee and medical admin. I feel weird (weirder than my baseline, which is impressive), and I’m listening to John Cooper Clarke because if you’re going to spiral, do it with better metaphors. Meanwhile I’m eating the same “safe” foods on loop like a hostage in my own kitchen. Even the rice is giving me side-eye. Who do I complain to? The beetroot?

This is where people chime in with “stay positive” and try to pat me on the head. Here’s a better idea: keep your hand clear of the goblin. Bite radius is expanding with age.

And before the chorus pipes up yes, I remember the glory days: hot rods, fast bikes, Santa Pod Raceway, petrol in the blood and tinnitus for dessert. Now it’s tyres on pavement and a battery gauge I stare at like an anxious parent. Same wind in the hair. Different horsepower.

If you’re wondering why I talk to AI so much, it’s because it actually answers. No waiting room Muzak. No being told I’m “overreacting.” Just: here’s what’s likely true, here’s what’s probably nonsense, here’s what to try next. Brutal honesty without the bored shrug. That’ll do, shard. That’ll do.

Affirmations for the ethically jaded:

If someone pats you on the head, bite the hand (metaphorically unless they insist).

If the world gaslights you, light your own damn torch.

If your food gaslights you, eat it anyway, glare at it, and write a poem about revenge.

Blue Staffy Manifestation Checklist (from the goblin to the universe):

Female, 2–4 years, spayed, local enough not to require a pilgrimage.

Good with powerchairs, swearing, and poetry.

Enjoys long rolls, short bursts of chaos, and snacks that don’t argue back.

Until the email lands, I’ll be here wired, tired, and mildly feral building the next mile with a dog I haven’t met yet.

Goblin logic of the day: positivity isn’t pretending it’s fine; it’s grinning while you sharpen the axe.

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 sky’s doing a pressure wash and my lawn looks like a pub carpet at closing brown, patchy, and ashamed. Hope springs eternal that the grass will forgive me. Hope also springs that the Weed-Wacker Man (breaker of worlds, destroyer of garden ornaments) will arrive in his legendary glory. He hasn’t broken anything recently, which is either character growth or a quiet before the smash.

We moved. We lost two decent mowers. The weed-wacker detonated itself across my shins like a budget claymore. The auction “bargain” mower was dead on arrival, staring at Albertine like it knew what it cost. Golden rule: test it at the auction we didn’t. Now we own a new second-hand mower and a new second-hand strimmer. Schrödinger’s tools: both working and about to die.

Meanwhile, tinnitus has decided to headline both ears right channel lead vocal, left channel harmony with the catchy single “Sustained High-Pitch Misery (Remix)”. Rush can’t drown it out. Switching to Jim Cornette because if I can’t silence the ringing, I can at least add shouting that makes sense. Kayfabe forever; reality can jog on.

My head’s cotton wool. Pressure left, pressure right, and a fluorescent whine drilling the centre. Headache rolling in like cheap weather. Agitation rising, spell-checker moaning in the corner. Next week promises the same thrilling itinerary: Nothing Happens, Then More Nothing. I’d scream into a field if the 3-wheeled Scooter of Death could survive the mud. It would not. It would explode, take a crow with it, and I’d be blamed in the parish notes.

Am I in reality? Unfortunately, yes. And it’s damp.

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.

Being in a powerchair turns you into an unwilling educator. Every trip outside is a crash course in society’s blind spots, usually delivered through insults, inconvenience, or straight-up ignorance. People love to say “we’ve come so far with accessibility.” Sure if by “far” you mean the distance between a broken lift and a locked “accessible” toilet.

Here’s a list of ten everyday things that piss off powerchair users. Read it, wince, and maybe think twice before you become Exhibit A.

1. People Using Your Chair as a Leaning Post

Public service announcement: my wheelchair is not furniture. It’s not a pub bar, not a bus pole, not a handy little shelf for your latte. It’s my legs, my freedom, my independence. Treating it like a prop is like leaning on a stranger’s shoulders in the street you’d get smacked.

When people pull this stunt, they’re lucky if they don’t go flying backwards when I tap the joystick forward. That’s not malice, that’s karma in motion. You lean, you lose. One little jolt and you’ll learn the hard way that powerchairs have horsepower.

2. Doorways Designed by Sadists

Doctors, dentists, even bloody hospitals the very places disabled people should be prioritised are often fortresses of inaccessibility. Narrow doors that scrape your knuckles, heavy ones that require the strength of Thor, and automatic doors that open just enough to wedge you halfway in, like Winnie the Pooh stuck in Rabbit’s hole.

Dentists are the worst: treatment rooms upstairs, lifts “out of order,” and a receptionist shrugging while suggesting you “find another practice.” Translation: go away, you’re inconvenient.

And don’t get me started on “accessible toilets” crammed with mop buckets and bins. Accessibility isn’t about token ramps or box-ticking. It’s about being able to live your life without negotiating with bad architecture. Right now, every doorway is a gamble and too often the house wins.

3. The Classic: “Wow, You’re So Fast!”

Yes, it’s a powerchair. Of course it moves fast. Did you expect pedals? Flintstone feet? The patronising tone is the real kicker, like I’m a toddler on a tricycle. Keep it up and you’ll discover just how fast this chair can spin on its axis right onto your toes. A&E will love explaining why you limped in.

4. Potholes and “Accessible” Kerbs That Aren’t

Kerbs with pathetic half-inch dips aren’t accessible they’re traps. Councils save money while my suspension gets battered like a carnival ride. Potholes lurk like landmines; hit one and your coffee becomes an abstract painting on your lap while your spine auditions for Cirque du Soleil. It’s not just inconvenient, it’s dangerous. But hey, there’s always money for another “disability awareness week” poster.

5. Strangers Asking, “What’s Wrong With You Then?”

This one deserves an Olympic medal for sheer audacity. You’re minding your own business and some random blurts out: “So what’s wrong with you then?” Not “hello,” not “how are you,” just straight for the jugular.

I like to lean in and whisper, “It’s a highly infectious disease. If I breathe too heavily, you might catch it. Best step back.” Watching the colour drain from their face is priceless. They shuffle off, and I get the luxury of personal space.

The truth? That question isn’t curiosity, it’s entitlement. It says, “You don’t look normal, so explain yourself.” If I want you to know, I’ll tell you. Otherwise, assume I’m just living my life—only with more horsepower under my seat.

6. Restaurants Proudly Announcing They’re “Accessible”…

Slap “accessible” on the website, job done. In reality? A step at the door, tables bolted in place like medieval stocks, bathrooms barely big enough for a broom, and emergency cords tied neatly out of reach. Accessibility isn’t a PR stunt. It’s the difference between being a customer and being excluded. Too many places still don’t get it or don’t care.

7. People Who Talk to Your Companion Instead of You

The dehumanisation is casual but brutal. “Does she take sugar?” they ask your friend, while you sit right there. My favourite move? Answer loudly before anyone else can. “Yes, she takes sugar and she also takes no prisoners.” Watch their eyes flicker with embarrassment, suddenly forced to acknowledge the person they just pretended didn’t exist.

8. Lifts That Break or Are Hijacked by Lazy Legs

When lifts break, you’re stranded. When lifts work, some healthy office drone barges in first with their Pret salad, glaring like you’re the inconvenience. Stairs are right there, mate try them. I fantasise about a trapdoor: anyone who uses the lift needlessly drops into a pit of angry mobility scooters. That would sort it.

9. Public Transport Roulette

Every bus journey is a gamble. Will the ramp work, or will the driver groan like you’ve ruined their day? Trains are worse staff “forget” the ramp, and you’re left waving goodbye from the platform while the carriage rolls off. They call it public transport, but for wheelchair users it’s more like a lottery. And the prize? Public humiliation.

10. Being Treated Like an Inspiration Just for Existing

“Wow, you’re so brave.” Brave for what buying milk? Surviving outside without bursting into grateful tears? This isn’t courage, it’s survival. You don’t call someone inspiring for walking to the corner shop. When people lay that label on you, what they’re really saying is: “I can’t imagine living like you, so I’ll frame your existence as heroism to make myself feel better.”

Save your pity dressed as praise. If you want to be inspired, fix your pavements, build real ramps, and design toilets that don’t double as janitor cupboards.

Final Word

Every one of these daily irritations isn’t just an annoyance they’re reminders of how the world still excludes people who don’t fit the narrow definition of “normal.” Dark humour is how many of us survive it, but the truth underneath is deadly serious: accessibility is not optional, and disabled people are not public property.

The world wasn’t built for us but that doesn’t mean we’ll stay quiet while it pretends otherwise.

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 strip away the polite medical brochures and glossy pharma ads. Multiple sclerosis isn’t some neatly packaged “condition” with smiling stock photos. It’s a dark, unpredictable bastard of a disease that wrecks the nervous system and leaves lives littered with scars—both visible and invisible. This isn’t the inspirational poster version. This is MS with the lights off.

The Viking Curse MS is more common the farther you live from the equator. Scientists think genetics and sun exposure play roles, but there’s a darker, almost mythic twist: some believe the Vikings carried and spread the genes for MS as they plundered their way across Europe. So if you’ve got Northern blood, your inheritance might not just be a proud family tree it might be a nervous system that self-destructs like a berserker on a bad day.

Latitude Lottery Born near the equator? Lower odds of MS. Born in the dim, cold north? Welcome to the danger zone. Vitamin D deficiency from lack of sunlight is a prime suspect. It’s cosmic irony: the very people starved of sunlight are the ones who need it most, cursed by geography to battle their own bodies.

The Epstein–Barr Smoking Gun Almost everyone with MS has had Epstein–Barr virus (EBV). You know, “the kissing disease.” Turns out a teenage snog-fest or bout of fever might set you up for a lifetime of neurological sabotage. Imagine that: one sweaty house party in 1983 and boom, 40 years later your immune system is gnawing on your spinal cord like it’s an all-you-can-eat buffet.

Rewiring the Brain The human brain is stubborn. When MS burns holes in the circuitry, the brain reroutes signals like a city trying to drive around craters after an air raid. For a while, it works. But eventually, the map falls apart. What was once clever detours becomes a city in ruins, where the traffic lights blink for no one.

Saint of the Falling Sickness The earliest known MS patient was Lidwina of Schiedam, a Dutch woman in the 1300s. She became paralyzed, lost her sight, and suffered relentless relapses. The church, in its usual twisted way, decided this was saint material. So now she’s the Patron Saint of ice skaters and the chronically ill. If sainthood is the consolation prize for decades of agony, no thanks.

Seasons of Relapse MS relapses love spring and summer. While the world bursts with life, your nervous system decides to collapse like a drunk uncle at a barbecue. Some say vitamin D fluctuations, some say infections, but really, MS just has terrible timing.

Life, Shortened MS doesn’t kill you quickly. It’s more like being forced to live with Death as a flatmate. Average life expectancy drops by 7–10 years, but the real torture is the decades spent watching your body betray you bit by bit. Death isn’t the horror here—it’s the endless rehearsal.

The Hug That Suffocates The infamous “MS Hug” sounds comforting, but it’s more like a python crushing your ribs from the inside. Imagine being gripped by an invisible straightjacket made of fire. It’s the worst Hallmark card sentiment ever: “Hugs, from your disease.”

Brain in Shrink-Wrap MS accelerates brain shrinkage, years faster than normal aging. Picture your thoughts, memories, and personality being slowly vacuum-sealed while you’re still alive. It’s not just neurological—it’s existential taxidermy.

MS isn’t neat. It isn’t poetic. It’s a horror show played out in slow motion, starring your nervous system. And yet, here’s the kicker: people keep going. They laugh, they fight, they even blog about it. Because what’s darker than MS itself? The fact that human beings can stare this monster down and keep dragging themselves forward anyway.

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.

Time is a drunk clown in cheap shoes doing cartwheels in my skull. Welcome to progressive MS, where your brain hits the brakes mid-thought and your day folds in on itself like a damp deckchair.

I’ve done the pharma carousel. Twenty to thirty pills a day, side-effects breeding side-effects like horny gremlins, needles for dessert. Result: zombie mode. Chair-bound, fogged, half a human. That’s not medicine. That’s chemical cosplay.

Then there’s medical cannabis oil and flower basic, honest, grown-in-dirt relief. It doesn’t cure MS (nothing does, spare me the miracle clickbait), but it calms the spasms, dulls the pain, gives sleep a chance, and lets me feel human without the opiate hangover. No “inspirational warrior” bullshit; just reality that works.

Benefits of Medical Weed (minus the brochure voice)

Pain Management Chronic pain and gnawing neuropathic nonsense stop chewing through my nerves. No opiate fog, no “what planet am I on?”

Mental Health Anxiety down, black dog naps. Depends on strain/dose, sure but I’m not staring at the wall planning my own funeral anymore.

Anti-Inflammatory Less swelling, less misery, less “scream into a cushion.” Crohn’s, RA—people report relief. “Early studies” say promise; my body says thanks.

Nausea & Appetite Chemo pukes? Weed body-checks them. Appetite returns without force-feeding pills and prayers.

Neurological CBD has receipts for seizures. For MS: spasms and stiffness throttle back. I can sit without my body re-enacting a mechanical bull.

Sleep Relaxation shows up, anxiety sods off, and I actually sleep before 4 a.m. Staring at ceilings is not a hobby.

Benefit	What NHS/Pharma Say	What Actually Happens (My Reality)
Pain Management	“May reduce discomfort.”	Spasms shut the fuck up. Nerve pain finally chills where opiates failed.
Mental Health	“Some report mild improvement.”	Anxiety eases, depression loosens. No death-stare at the wall.
Anti-Inflammatory	“Early studies show promise.”	Less swelling, less agony, fewer F-bombs per hour.
Nausea & Appetite	“Helps chemo-induced nausea.”	Vomitfest canceled; appetite returns without the pill pyramid.
Neurological	“May help seizures/spasticity.”	CBD reins in seizures; MS spasms stop playing rodeo.
Sleep	“Improves sleep in some cases.”	Real sleep. Not sedated oblivion. Actual rest.

Progressive MS + Weed: Straight from the trench

Spasticity: THC/CBD together take the edge off the iron-bar tightness. Oil for baseline, flower for flare-ups.

Neuropathic pain: The burning/zinging is less murderous. Not gone just not in charge.

Sleep: Indica-leaning strains knock me down gently. Not a sledgehammer, more a firm hand on the shoulder.

Mood/anxiety: Calmer. Not blissed, just steadier footing in a tilting room.

Fatigue: Mixed bag. Some days better, some days couch-glue. Timing + dose matter.

Cognition: Helps because pain/spasms back off. Too much THC? Hello marshmallow brain. Respect the line.

What it isn’t

A cure.

A halo.

A licence to hotbox yourself into next week. It’s medicine—treat it like one.

My takeaway

I’d rather be a weed-smelling goblin in an electric wheelchair than an NHS-approved opiate zombie. Weed doesn’t fix MS. It makes life with MS bearable. That’s the whole game.

(Standard sanity note: your body isn’t mine. Talk to a clinician who treats cannabis like medicine, not scandal. Start low, go slow, keep notes, don’t be a hero.)

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.

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.

---

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.