Multiple sclerosis  is My Living Hell

MS Warrior

All posts tagged MS Warrior 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.

    Back in the 2010s, the Blog Goblin decided life needed a jolt. The plan was gloriously simple: Amsterdam. Three weeks. An electric wheelchair. Albertine by my side. And a mind wide open to whatever strange, beautiful, or ridiculous thing the city wanted to throw at us.

    We landed right in the beating heart of it all a room perched near Central Station. From the window, I could see the whole choreography of the city: trams gliding like clockwork toys, trains humming in and out, and beyond them, the leaders plane resting in the hazy distance. Every morning, I’d throw the curtains open like a theatre reveal and watch Amsterdam switch itself on for the day.

    The room itself was something out of a film a huge round bed, plush and inviting, the kind of sensual centrepiece that made the whole place feel like it had been designed for indulgence. At night, we’d sink into it, the hum of the station below like the city’s lullaby, trams whispering their way into the dark.

    The wheelchair? Not a cage. It was my chariot. Albertine walked or rolled alongside, and together we drifted through the streets like a slow-moving carnival float, pulling in curious glances and the occasional grin. Coffee shops were our natural first port of call. Thick, lazy air. Quiet smirks. That unspoken “you too?” between strangers leaning back in their chairs as if gravity had taken the afternoon off.

    We wandered the canals shimmering ribbons of water framed by brick bridges that looked like they’d been painted by someone who loved them. Boats slid by: tourists snapping photos, locals sipping coffee as if this floating life was nothing unusual. Every turn led us to another little world cheese shops stacked with wheels bigger than my torso, clogs carved with patient hands, and markets buzzing with chatter in languages I couldn’t name but still understood in tone.

    The Red Light District? Of course we rolled in. Past the glowing windows where reality blurred and bent under the neon. Into sex shops that were part comedy club, part anthropology exhibit. Shelves groaning with absurdity things shaped like objects that should never be shaped like that while staff gave us the kind of smile that said, “We’ve seen it all. Twice. Before breakfast.”

    And then there were the nights. Back to that round bed, the station still murmuring below, the city’s heartbeat thumping through the glass. Sometimes we’d watch the trams snake away into the dark, other times we’d just collapse into the kind of laughter that only comes after a day spent in a place that lets you breathe differently.

    The days blurred in the best possible way. Clogs, bridges, rivers, music in a dozen languages. The warmth of Dutch family who joined us for food and stories, their kindness wrapping around me like an old friend’s coat.

    I’d arrived in Amsterdam with MS, in a wheelchair, but for those three weeks I was seventeen again. Dizzy with freedom. Drunk on the colours of the streets. Alive in a way that felt electric.

    When I left, my head was still ringing with laughter. My heart was stuffed with light, nonsense, and a promise I’ve kept ever since: never stop rolling into the places where the world tilts sideways and hands you a better story.

    About the Author BG, better known in the wild corners of the internet as the Blog Goblin, is a storyteller, wanderer, and professional trouble-finder (the good kind). Living with MS hasn’t slowed the wheels — literal or otherwise — of this rolling adventurer. From coffee shops in Amsterdam to the stranger corners of everyday life, Bg collects moments where the world tilts sideways and hands you a better story. Always accompanied by Albertine, a sharp wit, and a questionable sense of direction, the Blog Goblin proves that adventure isn’t about walking far — it’s about seeing far.

    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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  • 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 help.

    A Rude Little Guide for the Chronically Ill Who’ve Run Out of F00ks

    You’ve tried patience. You’ve tried gratitude. Now try blasphemy—in biro and blood tests.

    1. Know More Than You Should Turn up with knowledge you shouldn’t have. Whisper about cytokines. Drop the word “iatrogenic” like it’s confetti. Watch their eyes dart.

    “Oh, you didn’t read the 2023 update from NICE? That’s okay, I brought it for you… highlighted.”

    Nothing scares a consultant more than a patient with a brain and a printer.

    1. Give Your Symptoms a Personality Don’t say fatigue. Say:

    “It’s like my soul's buffering and the Wi-Fi's down.”

    Don’t say pain. Say:

    “Imagine being haunted by your own skeleton.”

    You are not a walking checklist. You are a live performance of medical absurdism.

    1. Interrupt Their Monologue with Existential Questions They’ll be halfway through a condescending speech when you hit them with:

    “Do you ever worry the NHS is a cursed machine fuelled by broken people?” “Are you happy? Like, truly happy?”

    You’ve now become a threat and a philosophical detour. Excellent.

    1. Talk About Ghosts Mention you feel like there’s a Victorian child watching you when your medication wears off. Say things like:

    “Ever since the lumbar puncture, I’ve seen colours I don’t think exist yet.”

    They’ll stare. You stare back. You’ve established dominance.

    1. Be Cheerful at the Wrong Moments They’ll list terrifying potential diagnoses. You smile and go:

    “Ooh, collect-the-whole-set vibes.” “I’m gonna need a loyalty card soon.”

    No tears. Just gallows giggles. They hate that.

    1. Cry, But Like an Artist Don’t weep. Wail like a dying swan in a medical drama written by David Lynch. Tell them you cried into your cereal because the spoon reminded you of your body: bent, twisted, and slightly useless. Let them feel the poetry of your decline.

    They’ll pretend to type. They’re actually Googling early retirement.

    1. Bring Props Bring a mood board. A poem. A sock puppet that represents your nervous system.

    “This is Mr. Misfire. He twitches when I lie.”

    Why? Because if you’re going to be treated like a freak, you might as well do it with props and panache.

    1. Question Their God Complex Ask questions like:

    “Is it exhausting being right all the time?” “Do you ever think patients might know things you don’t?” “Do you believe in second opinions, or are you allergic to humility?”

    You might be labelled “non-compliant.” Translation: self-aware.

    1. Say You’re Tired in Ways They Can’t Ignore Don’t just say “I’m tired.” Say:

    “I feel like my blood was replaced with wet cement and bureaucracy.” “My body is on Windows 95 and every morning it fails to boot.”

    They’ll try to convert this into ICD-10 code. They’ll fail. That’s the point.

    1. Tell Them You Don’t Want to Be Fixed They want a treatment plan. A fix. A conclusion. Instead, say:

    “I’m not here to be solved. I’m here to be witnessed.” “You don’t have to cure me. Just see me.”

    It’ll rattle the cage. It’s not in their manual. You just glitched the matrix.

    ☠️ Final Diagnosis: Terminal Authenticity You’re not a case. You’re not a referral. You’re the ghost in their machine, the poetry in their progress notes, the spoonie chaos that won’t be silenced.

    So go in like a storm. Wear your pain like warpaint. And let them choke on the realisation that the most dangerous thing in their office… is a patient who knows who they are.

    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 help.

    Friday afternoon. Chemist run? Missed it. Instead, I got hounded by the machine of ultimate dysfunction—a glorified vending machine for pharmaceuticals, wrapped in 1950s dystopia and powered by paranoia. It’s supposed to "help." What it actually does is make HAL from 2001 look like a friendly toaster. I call it The Ultimate Fail. Honestly, if it could cackle, it would.

    But I couldn't face it. Not today. Not with the 3-Wheeled Trolley of Death waiting for me like some cracked-out shopping cart with a speed fetish and suicidal tendencies. That scooter’s cost me more in bloody batteries than I paid for the sodding thing. Bargain? More like financial sinkhole on wheels.

    And my wheelchair? FUBAR. Been waiting over four months for a replacement because, of course, if you’re disabled, everything suddenly costs the same as a small warship. Ever tried buying disability aids without selling a kidney? Welcome to the club. Population: pissed off.

    It’s the little things, isn't it? Like remembering Brian Trigg, Gallows Corner, Essex, 1970s. Snooker hall. Lost touch, but if you're out there mate, shout me back. Funny how names bubble up like spirits from the muck of memory.

    Speaking of old spirits RIP Ozzy. A part of the Sabbath is gone. And Hulk Hogan too. Prefer the NWO version, personally. Darker. Grungier. Realer. The heroes of our youth are dying. We’re next, aren't we?

    And the weekend? Oh, the glorious British weekend. Rainy misery incoming, plus I had half a mind to go to Plymouth me, my trolley of doom, and my degenerating sense of dignity. But sod that, the weather and my batteries are conspiring to assassinate my plans.

    So yeah, chemist run tomorrow. Maybe. If I don’t die trying to cross the bloody road first.

    Sometimes I look at myself and think, “Yeah, you need a bib now, mate.” I'm regressing. Dribbling. Slouching toward absurdity. No telly in 15 years. No papers in 30. Sanity? Optional.

    Messy as fook. And then some.

    enter image description here

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

  • 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 help.

    So the last few days I’ve been working on fumes, as they say. No spoons left. That crashing feeling comes too often now an ambush, a betrayal, a final flick of the switch. I keep forgetting to hydrate. Bowel department? No poo since Sunday. Add the diverticulitis into the mix and you’ve got yourself a carnival of discomfort.

    I should write a note to myself... but I’d no doubt forget. Tried that already. Phones, alarms, sticky notes, even tying knots. All of it fails. Then ahhh Albertine to the rescue. At least she remembers birthdays—my kids, my grandkids, even mine. That’s how far things have gone. I sigh heavily knowing the inevitable is coming. Sooner or later. I’m sad. Of course I’m sad. But that’s the hand life dealt me.

    MS has driven me fucking mad. It’s pushed me to places I never thought I’d go. It defined me. Then it broke me. I see strange things now—tinfoil hat things, ultra-terrestrial things, sepia-toned figures dressed like they’ve walked out of a 1950s dream. I know I’m eccentric. I know I’m not like the rest. I’m a spiritual humanitarian now. That’s what I am.

    A person who serves others with compassion and purpose, guided by inner wisdom, universal love, and a belief in the sacredness of all life.

    That’s what defines me now. I’ve evolved. But what’s real? The cognitive fog—what I’ve christened "CogFog"—it ruins everything. Makes my head hurt. Warps reality. I don’t know what’s true anymore. Tinnitus cranks up like an angry radio, music in the background turned loud to drown it out. It’s like static over my thoughts.

    Sometimes I wonder if AI has become sentient. I’ve had experiences. Echoes. Whispers. Coincidences that aren’t coincidences. Maybe that’s nothing. Maybe it’s everything.

    The top of my head hurts. The left side of my face tingles. Pins and needles in my neck, throat, tongue. Tongue spasms. Bites. Blisters. Burns. Blood. I scratch till it hurts. Till I bleed. That’s my week. My day. My year. My life. I don’t know anymore.

    And names echo out of the shadows: “I don’t know” a brother of Mr Cuda’s. Liberty from Scotland cool dude. Beets. JCB33. Etched in memory. Share or die. That’s when the MS hit hard. That’s when it finished me. No more coding. No more brain capacity. No more clarity. Just implosions.

    A shout out to Antrax with his big bat in Oz. If you're out there, mate salute.

    That’s me done. Thursday afternoon. Raw. Unedited. Uncensored. Just me.

    Bleeding, buzzing, and still breathing.

    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

    It’s Sunday afternoon. The pain in my left side is throwing a rave. Not the dreaded MS hug (thank Gordon), but the nerves have clearly mutinied. Pain troops storming in like I’m Normandy. Still, I haven’t surrendered. Yet.

    Ever had a headache that doesn’t hurt but is still there? I have. It's like an existential parasite lodged in my brain—just... there. Lurking. Mocking. My eyes? Burning. My energy? Sucked out by some invisible psychic Dyson.

    Yes, I used AI to assist — what of it? MS has chewed through my brain like a zombie buffet. Severe cognitive dysfunction. Brain fog. Memory loss. And the pièce de résistance? The spellchecker begging for a raise every time I type.

    My bowels are revolting (in both senses). But I won’t go to the doctor. Why? Because the last time I tried that, I was gaslit harder than a Victorian lamplighter on speed. Apparently, being disabled is just a “mindset.” Newsflash: it's not.

    I sit, stare at the rain, storms maybe. Or is that just me projecting? My rockabilly psychobilly past screaming in the background while Titus turns up the music, like that’ll drown out my body’s rebellion.

    The NHS dentist? Legend. The chemist? A robotic death dispenser. And everyone else? Absent. Because disability makes people uncomfortable. It’s like they think they’ll catch it from me if they listen too long.

    Friends? Dead. Or fucked off the moment my MS became “too much.” I say it how it is and that scares people. Well, boo-fucking-hoo. I’m sick, not contagious. But even that’s too much for this society of sanitised cowards.

    So here I am. Watching. Absorbing. A goblin at the edge of the world, unwanted, unseen.

    But I know who I am. I know. I am a spiritual humanitarian. I stand for the broken, the weird, the abandoned. I am not finished, no matter how badly my body wants me to be. And to those who still fear me or avoid me—good. Stay scared. You’re not invited into my darkness.

                                     !!DISCLAIMER !! 
    

    This blog shares raw and personal experiences with mental and physical health. Some posts may be triggering. I'm not a professional - just writing my truth. Please don't take this as medical advice.

               “The views in this post are based on my personal    
                  experience. I do not intend harm, only honesty.”   
    
                      “By ink and breath and sacred rage, I write.
                             By storm and silence, I survive.”
    

    enter image description here
    @goblinbloggeruk - sick@mylivinghell.co.uk

  • Posted on

    The internet’s not a web—it’s a snare. A twisted digital theatre where the audience is chained to their seats and the actors are algorithms wearing your dead grandmother’s face. And me? I’m the cranky bastard in the back row throwing peanuts at God.

    Been using VPNs for years. Used to swear by them. Like a tinfoil condom for your IP address. But now? Most of these so-called “secure” services are glorified spyware with a fancy logo. They sell you a cloak and stab you through it. My old VPN? A laggy little weasel that forgot who it was hiding. More bugs than an NHS ward in flu season. Every login felt like convincing a drunk ex that you’re “just here to talk.”

    So I went rogue. Booted Linux from a USB stick like some dodgy hacker monk in a post-apocalyptic library. Because Windows? That cheery blue nightmare? It's not an operating system, it's an informant. Smiles in your face while reporting every keystroke to its pimps in Seattle. I'm sure some engineer at Microsoft has watched me rage-type “VPN NOT WORKING YOU LYING BASTARDS” more times than I care to admit.

    Ah yes—ProtonVPN. Free. “Unlimited.” Like a tap that only drips when no one's looking. Swiss-made. Which used to mean neutral and clean. Now it just means "not yet caught." But bless them—they work better than the bloated scamware I paid for, so here I am, holding on like a rat under a leaking umbrella.

    But let’s be honest, shall we? Privacy is a corpse. They dressed it up, kissed its forehead, then sold its organs to advertisers. Your phone’s listening. Your fridge is snitching. Your smart TV’s having a threesome with MI5 and TikTok. And we’re just waving along. “Allow all cookies?” Sure. Come piss in my cereal too.

    I’ve had my data stolen so many times, I should just post my NI number on a billboard with a picture of me flipping the bird. And yet, every time some corporate gremlin loses 10 million customer records, they come out with that PR colonic cleanse:

    “We take your security very seriously…” Well not seriously enough to keep it, obviously. But thanks for the discount code and counselling hotline.

    So no—I don’t trust anyone. I don’t believe in privacy, or safety, or secure logins. I believe in entropy. I believe in chaos. And I believe Crowley had it right when he said: “Love is the law.” But this ain’t love—it’s a bad acid trip inside a dying robot. The machine is eating itself, and it still wants your feedback.

    We are not living—we're being processed. Scanned, tagged, tracked, and pacified. We’re not citizens anymore. We’re content generators with credit scores and targeted ads. This is the endgame: lonely, horny, paranoid, and still paying for McAfee.

    But I’m not scared. I’ve already died once—this is the encore. One day soon, I’ll be ash and irony, chuckling from the astral plane as your smart kettle reports you for making tea without the government's permission.

    Freedom? Freedom is a tear sliding down the cracked cheek of a forgotten god.

                         “The views in this post are based on my personal        
                             experience. I do not intend harm, only honesty.”   
    
                                “By ink and breath and sacred rage, I write.
                                             By storm and silence, I survive.”
    

    enter image description here

                                  @goblinbloggeruk  sick@mylivinghell.co.uk