Multiple sclerosis  is My Living Hell

DisabledAndSarcastic

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

    Stuck in this godforsaken dark room, Eyes screaming like they’ve been sprayed with bleach, Hands twitching like malfunctioning Tesco self-checkouts, My body shaking like it’s front row at a Motorhead concert – Head banging into oblivion, Neck snapping in rhythm with the pain That torments my poor sorry soul.

    Electric shocks crawl up my spine, Lightning bolts cracking down into my doom pit, My despair echoing like a pensioner’s cough in an empty bingo hall, Tinnitus whistles through my skull – Steam trains rampaging through The fragile tunnels of what remains of my brain.

    Vision fractures. Darkness descends. I lay there convulsing like a broken Tesco rotisserie chicken, Limbs flailing in demon possession, Shorts soaked in sweat and piss, The air thick with the pungent green stench – A Liam fart that could evacuate a small village.

    And there it is. The demon weed wacker Spinning around and around in my skull, Shredding what’s left of me Into salad garnish for hell’s buffet table.

    But deeper still it drags me – Past the pain into that hollow silent place Where blackness becomes the teacher, Shaking becomes the prayer, And decay becomes the doorway To glimpse whatever comes next.

    This is the jida journey, mate – The demon your mirror, The weed wacker your unholy crown, Doom your disciple, Despair your only true devotion.

    Here in the dark room, Spirit fractures, Mind collapses, Soul endures – And I become the darkness itself.

    🩸 “My brain feels like a demon weed wacker is shredding it into salad garnish for hell’s buffet table.”

    🩸 “Convulsing in piss-soaked shorts, I met the darkness and it called me home.”

    🩸 “This is not poetry. This is survival with a sarcastic scream.”

    🩸 “The tinnitus steam trains whistle through my skull tunnels all night long.”

    🩸 “Pain is my ritual. Shaking is my prayer. Darkness is my god.”

    🩸 “British humour, demon weed wackers, piss, and doom. Welcome to my living hell.”

    🩸 “Sometimes I wonder if Motorhead is playing a secret gig in my spine.”

    🩸 “The demon weed wacker spins. My soul is shredded. It’s a vibe.”

    🩸 “Darkness teaches me what light never could.”

    🩸 “My suffering is not beautiful. But it’s real.”

           “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 ✨🧌
    
  • Posted on

    Another system rebuild. Another round of pretending this time it’ll work, that nothing vital will vanish into digital smoke. Maybe I’ll stick with Windows 11—just long enough to hate it all over again. Or maybe, finally, I’ll throw myself into Linux like a man falling from a burning building. Kodachi. Mint. Whonix. Take your pick, all flavours of escape.

    The plan? Dual life. Linux on a pen drive for when I need stealth and sanity. Custom Windows on the main drive for when I need chaos and legacy apps. But before anything happens, it’s backups. Backups of backups. Then backup the backup of the backup.

    I’ve lost too much already. Files. Art. Music. Decades of moments. Things that mattered. Gone because I trusted the wrong hard drive, or hit “yes” on a prompt I didn’t read at 4am because I couldn’t sleep from the pain—or the thoughts. Terabytes lost to time and stupidity.

    I’ve been part of this madness since the early 80s. When computing still felt like rebellion. When you could feel the electricity in the keys. Back when 40GB was god-tier and 32MB of RAM could change your life. When you didn’t need permission from five corporations to run software.

    Today, I did get out. Ended up at Fat Tony’s. Sex toys, incense, grinders, masks, and the surreal scent of liberation in the air. I could feel the laughter in my bones. Albertine grabbed a few curious bits and pieces. Good man behind the counter. Real. No masks. No script. Not like the world outside. Not like doctors.

    Came back home. Wheelchair of death started vibrating like it had unfinished business with the earth’s core. Loud enough to wake the ghosts I wish I could forget.

    The jam was a mistake. No sleep. Peeing every hour. Kidney screaming. Bladder playing drums. Night’s silence broken by the symphony of my body's decline.

    I asked the doctor for sleeping tablets. He laughed. Said I might sleep through an accident. “What,” I asked, “like shit myself?” He didn’t laugh back. Just stared at me like a creature in a tank. Something dying slowly behind glass.

    That same doctor once told me there was nothing more they could do. I rolled out of that office in my chair and into the hallway of despair. Slammed into the door just to feel something. I wasn’t a person to him—just another file closed. “Mr Goblin,” he said. As if I wasn’t already invisible.

    You think it ends there?

    I got a phone call years ago. I was stressed. The voice on the line? A GP. He tells me, flatly: “Oh yeah, you had a heart attack at some point.” Like it was the weather. Then the line goes dead.

    I went ice cold. Started spasming. Couldn’t breathe. Ambulance was called. Paramedics came. One looked like death in a hi-vis vest. He barked at me about not labelling my door clearly enough. I nearly told him to check my pulse and guess the address that way.

    ECG said yes, it happened. A “heart event.” Another ambulance came. The serious kind. They jabbed, they drugged, they stabilized the mess I was.

    But in that moment, on the floor, shaking and half-naked, I thought: So this is how it ends. Alone, misunderstood, staring at the cracked ceiling while the world rushes by outside.

    But no. I lived. Again. Like I always bloody do.

    And still my mind drifts. My half-sister. It’s been 10 years. Maybe she thinks of me. My older sister? Try 30. A lifetime of silence.

    Being adopted is a lifelong mind-fuck. You're the cuckoo in someone else’s nest. A mistake nobody admits. A problem to be hidden in a file folder somewhere.

    My family judged me because I lived in a council house. Because I was disabled. Because I wasn’t their version of clean or proper.

    But when they gave me a chance, I proved them wrong. Every time.

    Still… no calls. No letters. No visits.

    I wonder if my brothers are still alive. I wonder if they’d remember my voice.

    But hope is a slow suicide. So I smile instead. Laugh when I can. Back up my data like I’m guarding a soul in binary. Sit in my chair and watch the world pretend to care.

    I’m not done yet.

    Not by a long shot.

    Goblin still here

             “The views in this post are based on my personal  
              experience. I do not intend harm, only honesty.”  
    

    looking to buy a second hand q100 wheelcair or similar in the south west area as mine has gone completely to the breakers yard in the sky ... many thanks sick@mylivinghell.co.uk

              “By ink and breath and sacred rage, I write.
                        By storm and silence, I survive.”
    

    enter image description here

  • Posted on

    So I’ve been thinking — I know, shocking — but let's face it, MS really does blow chunks.

    You walk into a doctor’s surgery, tell them what's going on, and they're glued to their computer screen like they're checking the footie scores or writing a memoir. You wait for the questions, but it’s just nodding. Half-arsed. Then they look up at you like you’re the inconvenience.

    Let me paint the scene:

    I rock up in my wheelchair, scraping the doorframe because apparently, accessibility is still a mythical concept in parts of the UK. It’s one of those surgeries that's older than most of the patients — falling apart, steeped in the smell of wet plaster and resignation. I apologise for the door. It's that bad.

    I wheel in and the doc looks at me like I’ve just insulted his nan. I’ve found that neurologists in particular have a real flair for hating me — probably because I ask awkward questions that don’t come with a neat textbook answer. Their reaction? Condescension, mostly. “This is how you should feel,” they say. Oh, should I? How enlightening.

    To be honest, I didn’t want to be there. Waste. Of. Time.

    I’m sitting there trying not to blow a fuse while they judge me like I’m auditioning for Britain’s Got Neurological Issues. These days, though, I’m lucky. I moved. New docs. Better vibes. Now I hand over a list — symptoms, patterns, the works. I sit back and let them squirm.

    Still, I suffer from white coat syndrome so I’m already stressed the moment I see the antiseptic blue of NHS decor. But hey, the list helps. Unless you get that one GP who glances at your entire medical history like it’s a Wikipedia article they can’t be arsed to read.

    Everything, apparently, is caused by MS. I could sprout a second head and they’d say “Ah yes, classic MS.”

    So what have I learned?

    Being me — unapologetically, sarcastically, chronically ill me — is actually kinda liberating. I say it like it is (within reason… ish). I watch the world spin, watch my life fade out into this mad oblivion — and I keep fighting, whether it’s through brain fog, pain, or a poorly designed doorway.

    I’m sick as fuck, but such is life. And I’ll keep going — until my last breath or brain cell. Whichever taps out first.

    looking to buy a second hand q100 wheelcair or similar in the devon cornwall area as mine has gone completely to the breakers yard in the sky ... many thanks sick@mylivinghell.co.uk

              “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 "MS blows chunks. I keep fighting."

  • Posted on

    Well, wasn’t that just delightful. Another evening of bedtime surprises, like a game show where all the prizes are torture devices. Honestly, it was hotter than Satan’s armpit during a heatwave in a sauna. Crawling into bed felt like checking into Hell, room 666, with a complimentary pillow and a welcome spasm.

    I lay there, the Human Spasm Machine™, twitching like I was possessed by a caffeinated poltergeist. My throat? Oh, just casually reenacting a scene from The Exorcist. My tongue joined in too—spasming, shooting out like a party blower at a funeral. Except this party was full of pain and the numb tongue made it all the more festive.

    Then came the lip bite. Oh yes, proper horror film moment. Bit down hard—no pain, of course, just the iron-rich taste of failure. And with the temperature of any drink being a potential lava experience, I just lay there like a damp breadstick marinating in misery, waiting for the THC-CBD oil to take the edge off. Slowly, things downgraded from “murderous seizure rave” to just being Mr. Asshole at an all-you-can-eat buffet of nerve damage.

    Then my bladder piped up. "You need to piss," it said, like some condescending narrator. No catheter in, because clearly I'm not in any state to thread a tube down the Eye of Thunderer (yes, that eye). I tried to sit up—cue electric shocks to the spine like Zeus having a tantrum.

    Next thing I know, I'm just sitting there...and the floodgates open. Like a broken dam of dignity. Full-on urine monsoon. No lifeboat.

    As if that wasn’t enough of a carnival, my head joined in. Pins and needles danced round the crown like a medieval torture crown. Ears ringing with tinnitus so aggressive, it felt like Motörhead doing one last gig in my skull for their number one fan: Fizzy the Sultry Goblin Girl. And she wanted encores.

    And it still goes on, mind you. This isn’t a one-off. It’s not an episode. It’s just a revolving carousel of neurological hell. Sometimes it’s a demon, sometimes just a dickhead. Either way, balance like a drunk on ice. You get used to the absurdity. Sort of.

    So here I am, hugging a pillow like a Victorian maiden with consumption, trying not to slip fully into the existential pit. The kind of void where your mind floats off and never bothers to send a postcard. Because this is life with multiple sclerosis: an unpredictable blend of horror, comedy, and tragedy, written by a drunk playwright who thinks misery is edgy.

    Cheers to another night in paradise.This is life with multiple sclerosis.

    looking to buy a second hand q100 wheelcair or similar in the devon cornwall area as mine has gone completely to the breakers yard in the sky ... many thanks sick@mylivinghell.co.uk

           “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.”