Multiple sclerosis is My Living Hell

dark humour

All posts tagged dark humour 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.

    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 things you joke about that make outsiders squirm, but insiders nod, laugh, and maybe choke on their tea.

    Let’s face it: survival isn’t just about dragging your diseased carcass through another day. It’s about keeping your mind sharp enough to still stab at the absurdity of it all with a rusty spoon. Outsiders look at me and think, “That’s a bit much.” Insiders the ones who actually live with the daily grind of illness, disability, or the general circus of existence just snort, because we know the truth: dark humour is the only anaesthetic that doesn’t wear off.

    We joke about wheelchairs doing handbrake turns, and about our bodies being more unreliable than a 40-year-old washing machine that screams like a banshee and still doesn’t spin. about death knocking on the door and us telling it to sod off because the takeaway hasn’t arrived yet. And yes, it makes people uncomfortable. Good. That’s the point. If your laughter doesn’t come with a side of guilt, is it really worth laughing at?

    Dark humour isn’t cruel. It’s currency. It buys us moments of control when life’s stripped us bare. And for those who say, “You shouldn’t joke about that” congratulations, you’ve just outed yourself as a tourist. The rest of us are residents. Permanent. Non-refundable. And we’ll keep laughing in the waiting room of the apocalypse, thanks very much.

    Relevant Afternoon AI Thought If AI ever truly “understood” dark humour, it wouldn’t be because it learned to laugh — it would be because it learned to suffer. Until then, it’ll just be politely chuckling at our funeral jokes while secretly wondering if it should file a bug report.

    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 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

    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.

    I know its Friday..not been so good...late post..

    It’s Thursday. Rain hammering the windows like a bastard taxman. Fingers numb, throat strangling me like invisible hands trying to choke the last swear word out of me. Breathing stupid. Feel like puking. MS is a puppeteer with broken strings, and I’m the marionette twitching on the floor.

    So I lean on the secret weapon: AI. I smash the keyboard with numb hands, gibberish spills out, and the machine stitches it into sense. Without it, I’d be gone. With it, I’m still here, still ranting, still clawing the page. That’s life now: goblin vs. entropy, assisted by silicon.

    Last night: only up once. Bliss. Still woke shattered, like I’d been dragged behind a lorry. Tinnitus is screaming like a rave in a biscuit tin. Al Stewart can’t drown it, Sabbath can. I miss the rides the engines, the crew, adrenaline punching your veins until you felt immortal. Now I get my kicks from antihistamines and nostalgia.

    But there’s a dog coming. A rescue beast with eyes like trouble. She’ll chew my slippers and rearrange my world, and I say yes, please. New orbit needed.

    People ask: “How do you keep going?” Answer: I don’t. I collapse, I swear, I threaten the universe. Then I get up again because fuck lying down. Music, art, writing, sarcasm. That’s my oxygen. Neuroplasticity? Sure, call it that. I call it stubborn rewiring with duct tape.

    And now cannabis. Medical marijuana. Not fairy rings and mushroom cults. Real, legal, prescribed. The plant they jailed people for now comes with a bar code and a receipt. Hypocrisy tastes bitter, but relief tastes better.

    Positive points (the blunt edition):

    Pain: Cannabis tells nerve pain to piss off. Doesn’t cure, but takes the edge off enough to breathe.

    Spasticity: MS muscles seize like rusty hinges. Weed oils ease the vice-grip. Less claw, more unclench.

    Sleep: Nights of pacing and madness? Sometimes cannabis knocks you sideways into actual rest. A miracle in itself.

    Nausea & appetite: The body wants to puke? Cannabis reroutes you towards a sandwich. Beats wasting away.

    Anxiety: Not gone, but softened. Panic becomes background noise instead of a bullhorn.

    Is it perfect? No. But compared to Big Pharma’s endless pills and side effects, cannabis feels like sanity. Not a cure, not salvation just a tool that works.

    So here I am: Thursday, rain, tinnitus screaming, body trying to strangle itself, AI turning my mess into words, medical marijuana holding the line, Sabbath howling in the background. I feel like a six-year-old with villain energy. I’m weird. I’m wired. And I’m alive.

    Not inspirational. Not pretty. Just survival with jokes.

    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.

    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.

    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.

    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.

                 (Welcome to the Collective)
    

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

    Shared Adaptation & Support (Upgrades, Not Vibes)

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

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

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

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

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

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

    Ethics & Identity (Assimilation With Boundaries)

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

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

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

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

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

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

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

    The Joke That Isn’t One

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

    Closing (Terms & Conditions Apply)

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

    Pull Quotes (for callouts)

    “At least the Borg offer tech support.”

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

    “Assimilation, but make it informed consent.”

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

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

    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.

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

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

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

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

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

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

    Affirmations for the ethically jaded:

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

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

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

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

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

    Good with powerchairs, swearing, and poetry.

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

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

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

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

    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.

    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.

    enter image description here