⚠️ 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.

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.

It’s Tuesday. Allegedly. My head swears blind it’s Sunday. Sometimes it feels like both at once, which is the joy of progressive MS brain fog. You don’t just lose track of time, you lose the bloody concept of time. Hours, days, weeks it all dribbles into one big puddle of confusion until you’re sat there thinking, what the fuck was I just doing?

That’s the real head-fuck. It’s not just forgetting your keys or leaving the milk out. It’s thought itself freezing mid-air, like someone slammed down a steel shutter in your brain. You go from “I’m making tea” to “Who am I? Where am I? Why does this kettle look like a spaceship?” in seconds. It’s surreal. It’s exhausting. And it happens over and over, until you stop panicking and just shrug: oh, here comes another blackout in my head.

And yeah, I knew these days were coming. You don’t get diagnosed with progressive MS without seeing the future written in big black letters: this will get worse. But knowing it’s coming doesn’t make it easier when it hits. It just means you sit in the fog muttering, ah yes, the prophecy is fulfilled.

That’s why I lean on AI now. Because my spelling’s shot, my coherence goes missing like a drunk in a hedge, and some days even stringing a sentence together is like trying to herd feral cats. So I use my AI mate to bang it into words. And it works. No fluff. No “inspiration porn.” Just my reality in print.

Meanwhile, real life keeps grinding on. Two weeks from now, I finally get a call from wheelchair services. Six months I’ve waited. Six months of struggling without a powerchair. Six months of suffering because someone’s paperwork sat in a pile. A phone consultation is coming because what I needed all along was more time sat still on my arse waiting for the system to remember I exist.

And the pain clinic? They’re fine. Professional. A bit of NLP-lite sprinkled in, which makes me laugh. You can’t gaslight me I’ve been gaslit more times than a Victorian street. They mean well, but until you live inside this mess, you don’t get it. You can nod. You can sympathise. But you don’t know.

Here’s what I know: I don’t want their “coping strategies.” I don’t want another rebrand of pseudo-science telling me how to breathe through my agony. I’ve done the pills 20, 30 a day. I’ve done the needles. I’ve done the zombie shuffle where you’re doped so heavily you forget you even exist. No thanks. I’ll take my medical weed, roll it up, and live in a way that actually calms the spasms without frying my brain into porridge.

I’m not delusional. I know there’s no cure. Death walks next to me every day like a bad smell that won’t piss off. And when you face death daily, not in the cinematic “battle cancer and win” way, but in the slow, grinding “death is waiting in the next room” way, it changes you. You stop being afraid. You start being blunt.

Friends? None. Illness strips them away. Chronic illness is a private club and only those inside it get the membership card. That’s not bitterness, that’s just reality.

And because the universe has a sick sense of humour, I’m plagued by bloody flies. Everywhere. The zapper’s gone on strike. Motorhead’s blaring loud enough to melt glass, but even Lemmy’s bass won’t fry a single one. So I’m left in the fog, swatting flies, laughing at the absurdity of it all.

So yeah. Tuesday. Sunday. Who cares? It’s another day in the trenches. Another day in the slow death suit. Another day where brain fog fucks with me, the flies mock me, and I carry on 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.

Sounds lovely, doesn’t it? Simple. Gentle. Like a spiritual permission slip written in soft candlelight. But then reality. Then people.

The Wiccan Rede isn’t a fluffy motto for floating through life like a chiffon-draped faery. It’s a challenge. A dare from the universe. A whispered reminder:

“Behave… or the cosmic slap is coming.”

🐍 The Hard Part: “Harm None”

This is where most of us trip. “Harm none” sounds saintly until you actually try it. Have you met people? They’re messy, loud, selfish, loving, broken, healing, hopeful, cruel, and kind all in the same breath.

You’re going to harm sometimes. With words, with silence, by accident, by simply existing differently than someone wants you to.

The Rede isn’t saying you can avoid harm altogether. It’s saying: don’t be careless. Don’t throw hexes around like confetti. Don’t wield your will without thought.

Real compassion is hard work. It means stopping to breathe before you lash out. It means trying really trying to see another human as a tangled ball of needs and pain, not just “the enemy.” And when you do harm (because you will), it means owning it, repairing it, not pretending it never happened.

🕸️ “Do What Ye Will”

Now for the fun part. Freedom.

The Rede doesn’t cage you. It doesn’t hand you a checklist of “good witch” behaviours. It says: choose. Make your will real. Sing to the moon. Dance barefoot in your kitchen. Call on gods, ancestors, or just the wild stubbornness in your own chest.

You’re allowed. You’re free. That’s the beauty.

But hidden in that freedom is a catch: responsibility.

If your will becomes sloppy, selfish, or cruel, it doesn’t matter how beautiful your altar looks you’re feeding chaos, not craft.

So if you manifest a clingy Capricorn with mummy issues instead of your dream soulmate… that’s on you, sunshine. Magic is only as precise as the witch casting it.

🔮 The Rule of Three: Karma With Interest

Every thought, every act, every muttered curse what you send out ripples back.

The “Rule of Three” isn’t about math, it’s about consequence. Energy multiplies.

When you spit venom, it doesn’t just stick to the target. It circles back and coats you, too. When you bless, heal, or protect, that good energy lifts you as well.

Think of it like throwing a boomerang with a jet engine strapped on: it will return, and it might hit harder than you expect.

So yes, when Mildrid from HR steals your stapler and you mutter “may you stub your toe forever,” don’t be shocked when the universe gifts you with a coffee spill, a sulking cat, and a cracked phone screen.

🕯️ The Ritual of Not Being an Arsehole

Here’s the deepest magic of all: It’s not in fancy robes, obscure herbs, or knowing which phase of the moon is best for prosperity spells. Real witchcraft is how you live.

Showing up for your friends when Mercury’s in tantrum mode.

Choosing peace over pettiness (most of the time).

Walking your path without trampling someone else’s.

Offering kindness like you’d offer salt: simple, necessary, life-preserving.

It doesn’t mean you never curse, never rage, never slam the door. It means you own your power. You wield it deliberately. You don’t waste it proving points to people who don’t matter.

That’s what the Rede is trying to whisper: your will is sacred, but so are the ripples you leave behind.

🌕 Final Blessing (Such As It Is)

So here’s the Rede, in plain language for a messy, human, hurting, healing world:

Do what you will. Love deeply. Harm carefully. Own your magic. Own your consequences.

When you must hex, do it artfully. When you must forgive, do it fully.

Live your craft. Not with perfection, but with presence.

And for the love of all that is holy—try not to set anything on fire. Unless, of course, it’s part of the ritual.

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.

⚠️ 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.