Multiple sclerosis is My Living Hell

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All posts tagged disability by Multiple sclerosis is My Living Hell
  • Posted on

    ⚠️ 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.

    Somewhere between the last tick of the clock and the first drip of morphine, the bells started ringing again. Not church bells no. Church bells are polite, distant, Sunday-morning illusions. These were division bells. The kind that toll when your mind’s had enough of being reasonable and your body’s thrown in the towel. The kind that echo through hospital corridors and half-remembered dreams of youth, when the world still felt like it might one day make sense.

    They said there were “High Hopes” capital H, capital H, as if that made it more official but I don’t recall signing up for the sequel to Pink Floyd’s existential midlife crisis. I was too busy trying to work out how to get out of bed without summoning a small army of pain gremlins. They march at dawn, those bastards, armed with canes, cramps, and a sick sense of humour.

    I remember when the grass was greener. Before it was paved over by mobility scooters and medical appointments. Before every sunrise came with the question: “What part of me’s not working today?” I used to walk no, stride across fields, the wind howling like some cosmic prankster whispering, “You’re immortal!” Turns out, I was just really bad at reading the fine print.

    Now the wind howls through the cracked seals of my van, Rusty One, smelling of WD-40, dog biscuits, and defiance. Yopi, my furry therapist and four-legged anarchist, sits in the passenger seat judging humanity with the serene disdain only a dog can manage. Together, we drive through Dark’s World a place that’s half blog, half fever dream, half post-apocalyptic memoir. (Yes, that’s three halves. Don’t do the maths. Reality stopped balancing books long ago.)

    Chronic illness isn’t a slow fade. It’s a dark comedy written by Kafka and directed by Monty Python. One minute you’re philosophising about consciousness, the next you’re wrestling a wheelchair that insists on acting possessed. “Exorcise this thing!” I mutter, as Yopi gives me the side-eye that says, “You bought the cheap batteries again, didn’t you?”

    Every day’s a strange mixture of grief and giggles. The body fails, the mind rebels, and the soul just sits there in the corner, rolling its eyes. I’ve met God or at least the cosmic version of a system admin and let me tell you, they’re as confused as the rest of us. The script got corrupted somewhere around 2020. Now it’s all patch updates and glitchy humans pretending the world isn’t buffering.

    But there’s poetry in the breakdown. Beauty in the absurdity of a life that refuses to play nice. When you’ve lost enough, laughter becomes rebellion. You laugh because the alternative’s a long nap you might not wake up from. You laugh because, deep down, you know the universe is trolling you and you’ve decided to troll it back.

    Sometimes I watch the leaves fall like burnt-out neurons and think: this is the soundtrack to every high hope I ever had. And then that eternal voice drifts in from the background

    “The endless river… forever and ever…”

    Yeah, alright mate but this river’s full of potholes, hospital letters, and dog hair. Still, we sail it. Because what else is there to do but keep floating, sideways, through the muck of memory and malfunction?

    In Dark’s World, there are no “motivational quotes.” Just dark jokes and half-empty mugs. We don’t chase perfection. We chase moments small, absurd, brilliant flashes of clarity. Life is an out-of-tune guitar still being played because the song’s not done yet. You make noise. You make meaning. You keep going.

    And the bells? They still ring, faint and distant not as warnings, but as reminders. That even when everything breaks, the music doesn’t stop. It just gets weirder, more honest, and a hell of a lot louder.

    So here’s to the fallen and the foolish, the sick and the sarcastic, the dreamers and the defiant. We’re still here rolling, writing, laughing, swearing, and refusing to shut up. High hopes? Not quite. Just raw, crooked, darkly glowing ones forged in hellfire and humour.

    And somewhere, far off in the fading light, a bell rings again. It doesn’t divide anymore. It just echoes.

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

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ enter image description here @goblinbloggeruk - sick@mylivinghell.co.uk

  • Posted on

    ⚠️ 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 leaves are bailing out like they’ve seen next quarter’s energy bill. I took Rusty One the van out, and my electric chair sulked like a teenager told to walk the dog. It hates the cold. Same, mate. I’ll need to keep everything charged like a hospital Christmas tree, or I’m going to be crawling to the kettle.

    Woke at 04:30 standard hell o’clock with pain loud enough to need a volume knob. Lay there thinking the usual deep thoughts: why, how, and where did I put the brain I used to have? Dropped back off till 06:30, then the body staged its morning coup. Everything seized. The cold climbed inside and refused to leave. Charming.

    I don’t drive or ride anymore MS ate the balance, then came back for dessert and took the cognition. Travel sickness joined the party because apparently the body wanted a plot twist. Motion turns my head to soup; the kind they serve cold with a side of sarcasm.

    Meanwhile, Yopi the alpha blueblood bulldog, house tyrant, 23 kilos of warm gravity is in excellent spirits. She’s blown through a B&M squeaky toy in about five minutes, which is a personal best if you’re into swift annihilation. Two front paws on my thigh, breath on my face, jaws like a medieval exhibit, eyes saying “belly rub or else.” She is now auditioning for “lap dog” in the wrong size.

    Kibble? That beige gravel? She stares at it like I’ve served packing peanuts. Wet food, though acceptable. Rice with tuna? She ascends. Mackerel? She goes full comet. Albertine showed me a massacre of old toys a crime scene with fluff for snow. We mourned briefly and moved on.

    As for me: it’s the bad slice of the day. Pain gnawing. Nausea playing DJ. The screen glaring like an interrogation lamp while I two-finger type my way through the fog. The plan is simple: bed, dark room, no noise, no heroics. Just a truce with the nervous system until the next round.

    Autumn is pretty if you’re a tree. For the rest of us, it’s rust.

    Afternoon AI: Brain status — 12% battery, 78% sarcasm, firmware throttled by cold weather. Recommended patch: tea, blanket, and a dog snoring like a faulty tuba.

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

    @goblinbloggeruk - sick@mylivinghell.co.uk 𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ

    enter image description here

  • Posted on

    ⚠️ 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.

    People love to quote Plato like he was the first bloke to stare at a wall and call it a revelation.
    “Look,” they say, “we’re all prisoners in the cave of illusion.”
    Nice theory, mate.
    Try living in a body that’s staging a coup d’état against your nervous system, and tell me again about shadows.

    Progressive MS the words themselves are a joke.
    Progressive, like I’m advancing somewhere.
    All I’m advancing toward is gravity, confusion, and the slow betrayal of my own wiring. My legs don’t walk, my hands improvise, and my mind sometimes wanders off without leaving a note. If that’s not Plato’s cave, I don’t know what is. Only mine’s not carved in stone it’s flesh, bone, and electrical static.

    Plato imagined people chained, staring at shadows, mistaking illusion for reality.
    I get it. I mistake memories for motion every day.
    I remember what it felt like to move freely the smooth mechanical grace of a body obeying thought.
    Now it’s all echoes on the wall.
    I reach out for those memories like a fool, knowing full well the limbs won’t answer. That’s the cruelty of it: the mind remembers what the body refuses to perform.

    They say gnosis that secret knowing is enlightenment.
    Bullshit. It’s not light pouring in. It’s the realisation that there is no exit.
    The body is the cave. The mind is the flickering torchlight throwing half-truths across the wall.
    The trick isn’t escaping — it’s learning to see in the dark.
    To live with the shadows long enough that they start whispering secrets.

    Some days the fog rolls in, and cognition slips through my fingers like smoke.
    That’s when the cave gets loud echoes of frustration, grief, rage.
    But beneath that noise, there’s something else: stillness.
    When the body fails, awareness sharpens.
    It’s like the universe is saying, Fine, you can’t move so you’ll learn to observe.
    And in that stillness, gnosis crawls in. Not as comfort, but as clarity.

    Plato’s philosopher escaped the cave to see the light of truth.
    I’m not escaping anywhere.
    The ascent isn’t physical; it’s inward.
    It’s turning toward the source that’s both pain and perception, realising you were never separate from the wall, the fire, or the shadow.
    You’re the whole damn projection body, soul, and malfunction.

    So yes, I’m stuck in my cave. But it’s mine.
    The shadows on the wall are memories, regrets, small victories, and dark jokes that only I laugh at.
    Sometimes they dance. Sometimes they just sit there, silent and honest.
    And that’s enough.
    Enlightenment doesn’t mean walking out into the sun — it means looking straight at the darkness and recognising your own reflection.

    Maybe Plato climbed out.
    Maybe I just learned to redecorate.

    Either way, the cave’s got Wi-Fi now, and I’ve got words.
    The shadows move, the neurons misfire, but I’m still here still watching, still learning, still goddamn alive.

    Plato had his cave. I’ve got MS, a powerchair, and a front-row seat to the shadows. You don’t escape the body you learn to see in the dark.

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

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ enter image description here @goblinbloggeruk - sick@mylivinghell.co.uk

  • Posted on

    ⚠️ 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.

    As I look out the window, the hail is hammering the glass like nature’s own gang of thugs with ice-cubes. Each impact rattles through the room, echoing the storm going on inside my head. The concrete outside is now polka-dotted with white splats, like some deranged pastry chef has been at it. Above, thick, dark clouds are parked overhead, glaring down at me with all the charm of a nightclub bouncer at closing time. They’re not moving. They’re just there giving me the big “FU” while the sun tries to photobomb from behind them, throwing out an oddly warm glow.

    Normally, I’m colder than a fish finger left at the back of the freezer. My hands are like small icebergs, my circulation having given up years ago. But somehow, in this moment, I actually feel a bit of warmth. Weird, right? My throat and neck, on the other hand, are throwing a tantrum that familiar strangulation feeling wrapping around the right side of my throat and Adam’s apple. Lucky me, it’s only a half-strangle today. Always a silver lining.

    The top left of my head is doing its usual numb, pins-and-needles number, and the background soundtrack is a hellish lift music loop from the underworld. Perfect timing too because Rob Zombie just started blasting from my PC, in German of all things. It’s like being trapped inside a very confused nightclub. My hands are blocks of ice, typing slower than dial-up internet, but here we are.

    When the Wall Hits Back

    Years ago, in a particularly bad storm of frustration, I headbutted a wall. And yes, the wall won. Knocked myself out cold. Not my proudest moment, but it did force me to confront a few things I’d buried. Mental health wasn’t a conversation it was a brick wall. Literally.

    I felt completely misunderstood, like shouting into a void where nobody bothers to echo back. The only reason I got through it was because of my partner 42 years together and tougher than steel. We went through hell side by side, piecing my brain back together over five long years. Eventually, I realised what was gnawing at me: PTSD. Once I called it by its name, I could finally start wrestling it properly.

    The Pain People Don’t See

    Physical pain and mental pain love to hold hands; they’re like a toxic couple that won’t break up. People see the wheelchair, they see the physical stuff, but they don’t get the soundtrack in my head, the weird sensations, the pressure, the fading memory.

    I always tell people: go to your GP or a mental health professional. Get help. Don’t do what I did. My route was raw, brutal, and not for the faint-hearted. I’m a proud disabled man who’s learned to embrace his Marmite nature you’ll love me or hate me, but I’m not hiding anymore.

    I’ve spoken to the ghost in the machine. It told me I’ve got purpose, and I bloody well believe it.

    The Present Storm

    The hail is still bashing the windows. Yopi the dog has just let one rip, and I’ve remembered to stop breathing through my nose. The little things keep me grounded. My memory’s slipping more these days, the right side of my head feels like it’s stuffed with wet sand, but I keep rolling.

    Every journey in my powerchair is a trip into the unknown. Sometimes it’s chaos, sometimes it’s peace, usually it’s somewhere awkwardly in between. But I’m still here. Still moving. Still me.

    Afternoon AI

    Today’s weather forecast: 90% chance of hail, 100% chance of existential commentary, with occasional German industrial metal.

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

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
    enter image description here

    @goblinbloggeruk - sick@mylivinghell.co.uk

  • Posted on

    ⚠️ 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 Many Faces of MS: Four Shades of the Same Beast

    Doctors love tidy categories. It makes their conferences neater and their PowerPoints prettier. They say there are four main types of MS: CIS, RRMS, SPMS, PPMS. Add a few rarities for spice malignant, benign, radiological-only and voilà: a zoo of acronyms.

    But here’s the truth: those tidy boxes don’t mean a damn thing when you’re living it. MS doesn’t give a toss about your labels. It just chews through nerves at its own pace while you try to hang on with your fingernails.

    My Version of the Four Types

    The Intruder Phase

    The first knock at the door. A rogue signal. Something’s off, but you don’t yet know the squatters have moved in. Fear mixed with disbelief, like waiting for a verdict you already know is guilty.

    The Checkerboard War

    Flare, heal, flare, heal. A sick game of snakes and ladders, only the dice are loaded. You learn strategy: rest, attack, regroup. But the house always wins in the end.

    The Slow Burn

    Relapses fade, but the damage doesn’t. Inch by inch, it eats. You don’t need a flashy MRI to prove it you can feel the slow rot in your bones, your mind, your will. This is SPMS: the bastard’s long game.

    The Quiet Conquest

    For some, there’s no drama, no storms, no sudden drops. Just a slow, relentless tightening of the vice. That’s PPMS: the quiet predator. It doesn’t roar, it whispers while it strangles.

    And then there are the ghost forms: so-called benign (which feels like a cruel joke) or the malignant that slams into you like a train.

    What These Labels Hide

    • Flux & Overlap: The lines aren’t walls. You slide, bleed, convert. Boxes aren’t boundaries, just suggestions.
    • Emotional Punch: Being told “you have PPMS” is like being handed a death sentence dressed up in medical Latin.
    • The System’s Lens: These labels exist for trials, drugs, and insurance companies. They don’t guide your daily grind.
    • Your Identity: To outsiders, you become the acronym. But you are not “SPMS.” You are a person dragging a monster.

    My Hope, My Roar

    These categories might help doctors, but they don’t define us. If MS insists on giving me a label, I’ll twist it into something else. I’ll call it by my words: intruder, war, burn, conquest.

    Because at the end of the day, there isn’t four MSes. There’s one beast, swapping masks. Today it’s relapse and remission, tomorrow it’s slow suffocation. Same predator, different costume.

    So when the next shiny study lands new drug, new vitamin, new miracle—I check the fine print. Who are they studying? “Active MS”? “Early RRMS”? The rest of us watch from the side-lines, left holding the bill.

    I roar because I’ve been there. I’ve seen the trenches. I’ve lived beyond the tidy labels. And if MS dares to name me, I’ll name it back with rage, with metaphor, with gallows humour.

    Afternoon AI Thought: MS has “four types,” they say. I say it’s one predator with a wardrobe problem today a wolf, tomorrow a vulture, always the same teeth.

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

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
    enter image description here

  • Posted on

    ⚠️ 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 FDA (our cousins across the pond) just gave “tentative approval” to a generic version of Zeposia (ozanimod), one of the many alphabet-soup drugs meant to keep MS from eating us alive. Tentative means “yes, but not really” like being offered a pint and then told the bar’s shut for refurb.

    In the UK, this matters because once the patents loosen their grip, generics can flood in and in theory the NHS might actually afford to hand them out without an existential crisis.

    The NHS Angle

    Cost: Prescriptions are capped at £9.90, but behind the scenes, the NHS is getting mugged for thousands per patient. A generic could cut the bill, maybe freeing up money for… oh I don’t know, hospital chairs that don’t disintegrate on sight.

    NICE Bureaucracy: Even if the generic’s cheaper, it still has to crawl through the NICE assessment maze. That means years of reports, consultations, and polite “considerations” while we nap in waiting rooms.

    Postcode Lottery: In theory, cheaper drugs mean fewer cruel “not funded in your area” letters. In practice, the NHS is a patchwork quilt held together with sticky tape and denial, so don’t bet your mobility scooter on it.

    What It Means for Us Mere Mortals

    If it works out, we get:

    Less guilt about bankrupting the system every time we collect a blister pack.

    More chance of actually getting the drug if you need it.

    A tiny glimmer of justice in a system that usually treats chronic illness like a budget inconvenience.

    But don’t kid yourself: “tentative” is a synonym for “sit down, shut up, and wait.”

    Dark Sarcasm Corner

    Big Pharma: “That’ll be £50k, cheers.” Generics: “Tenner, mate.” NHS: “We’ll let you know in 2029 after the committee meeting.”

    Closing Ceremony

    This is good news but only in the way hearing your execution’s delayed counts as good news. For now, same pills, same circus, different price tag on the horizon. Clap quietly; we don’t want to startle the bureaucrats.

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.,
    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ

  • Posted on

    ⚠️ 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 Fatigue Olympics — A Users’ Guide to Collapsing with Style

    You know that moment when your body files for bankruptcy mid-toast? Welcome to the Fatigue Olympics: events nobody asked for, medals nobody wants, commentary provided by a goblin with a migraine and a sense of humour darker than a southern sky in February.

    Opening Ceremony (lights off, obviously)

    No fireworks. Too bright. We light a tea candle, stare at it for four minutes, then cancel the parade because we’re exhausted from thinking about it.

    Events

    100m Dash to the Loo

    You stand. The world tilts. Knees write a resignation letter. Heroic sit-down pee. Gold medal for not crying on the bath mat.

    Toast Marathon

    Aim: butter toast. Outcome: butter floor, butter dog, butter despair. The toaster dings like a smug little tyrant. DNF (Did Not Finish), again.

    Sofa Free-Climb

    Mid-sentence coma. You wake three hours later with a crumb fossilised to your cheek. Was it an important conversation? Probably. Did you survive? Also probably.

    Shower Sprint

    You manage one armpit and a stern glance at the shampoo. Podium finish if you got your hair wet on purpose.

    Remote-Control Deadlift

    Attempt to change channel. Drop remote on face. Pretend it was “mindfulness.” Bronze medal for not swearing at inanimate objects (you swore).

    Stairs Biathlon

    Climb and breathe. That’s it. That’s the sport. Personal best if you don’t consider simply living at the top step forever.

    Grocery Gauntlet

    Entering the shop was hubris. Leaving is a quest. Bread is heavy now. Who made bread heavy?

    Scoring System

    Finished without crying: +10

    Finished while crying: +20 (tears count as electrolytes)

    Didn’t finish but made a meme about it: automatic silver

    Cancelled the day and survived: lifetime achievement award

    Why this isn’t “just being tired”

    Fatigue is a hostile takeover. It hijacks signal from brain to body and replaces it with static. You’re not lazy; your wiring is on fire. Some days clarity visits for a few hours; you shift your mindset, put on music, make art, write something grim and honest, and that tiny act becomes revolutionary. That’s the win: not pretending it’s fine—moving anyway, even if “moving” is tapping one sentence and then lying down like a Victorian ghost.

    Closing Ceremony

    We applaud in our heads to conserve energy. The anthem is played at half-speed. Everyone leaves early and naps like champions.

    Post Footer: Practical Notes (because survival is punk)

    Lower the bar until you can step over it. Then lower it again.

    One task = a win. Two = a parade.

    Music, art, writing: not hobbies—lifelines.

    If anyone calls you “brave,” invoice them.

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

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  • Posted on

    ⚠️ 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.

    1. 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.

    1. 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.

    1. 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.

    1. 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.

    1. 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.

    1. 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).

    1. 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.

    enter image description here

  • Posted on

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

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

    So where did these gremlins come from?

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

    Why does it work (when it works)?

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

    Attention engineering: making + destroying = sticky memory.

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

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

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

    Build one without the faff

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

    Strip the repeats. Mash letters; toss duplicates.

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

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

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

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

    Reading the “encoded” bits

    Geometry: triangles bite; circles soothe; spirals seduce.

    Density: cramped = pressure; open = trust.

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

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

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

    What about ethics?

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

    The wheelchair bit

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

    TLDR (Too Long; Drew Rune)

    Draw a vow your brain can’t ignore.

    Charge it with a state shift.

    Forget it like last year’s password.

    Act like someone who meant it.

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

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

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

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

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

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

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

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

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

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

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

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