⚠️ 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.

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.

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

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

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

What’s actually happening (body edition):

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What the Hell Is It?

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

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

Triggers: The Everyday Tortures

Hot weather → 25°C feels like the Sahara.

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

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

Fever → as if being sick wasn’t enough.

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

What It Feels Like

Pick your poison:

Blurred vision — like someone smeared Vaseline over your eyes.

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

Balance — wobbly as a drunk pigeon on roller skates.

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

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

All your regular MS crap, amped up by heat.

The (Small) Mercy

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

Coping (aka Not Melting to Death)

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

Fans, cold packs, cool showers.

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

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

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

Why Write This?

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

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

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

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