Multiple sclerosis is My Living Hell

MS

All posts tagged MS 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 help.

    This weekend was weird. But not in the usual weird for me way this was deeply, spiritually, bowel-wrenchingly weird. The kind of weird where something changes and you just know you won’t be the same again.

    Let’s start with the chaos: Sunday morning, 6AM. All hell broke loose internally. After four days of digestive strike action, I finally had a poo. I don’t mean a polite little nudge I mean a full-blown, soul-cleansing exorcism. Two hours. Non-stop. You ever evacuate trauma through your arse? Highly recommend it. I’d been hydrating so much I thought I might grow gills.

    Then came the auction. I'd won. I’d actually won what I wanted. And buried among the bits was something that hit me like a metaphysical brick to the forehead: a tiny Southdown Bristol Lodekka FS bus. A toy. A time machine. And suddenly

    Bognor Regis, 1970-something.

    Me, chatting to bus drivers in that hazy golden glow of childhood. Waiting for the coach to Elmer Sands. That smell diesel, leather, sweat, something comforting. That sound engines coughing awake, drivers shouting to each other, holiday voices bouncing off wet tarmac. And the old Royal Blue coaches too… they’re all there. Memories hiding in plastic and dust, waiting for me to wake up.

    And I did. Sunday, something cracked open.

    Call it an awakening, a full-on gnōsis moment, a metaphysical “oh fuck, this is real.” My brain fogged, battered, often broken by MS suddenly understood. I reached somewhere I never thought I’d reach. And I didn’t even know I was heading there. It just happened. Snap. Click. And there I was, awake.

    That shift followed me right into the dentist’s chair Monday morning. Now let me be clear: I’ve hated dentists since childhood. The smell, the feeling, the loss of control. Usually, it’s a white-knuckle ride of pure panic and bowel tension.

    Not this time.

    This time, I was calm. No meds. No panic. No sense of doom. Just… acceptance. Even when he said the word “drilling.” Usually, that word makes me want to vanish into the ceiling tiles.

    But I just smiled. Said “okay.”

    And then he drilled. I felt it, but it didn’t bother me. No sedation, no distraction. I was just… there. I was in the moment. Aware. Free.

    I rolled out to the van afterward and couldn’t quite believe it. Something in me has changed, and I don’t think it’s going back. Even the pharmacy run didn’t faze me even when the infernal vending machine tried to hand me someone else’s meds. The world felt possible, even in the drizzle, even under the weight of average speed cameras and crumbling roads.

    This storm outside? It’s echoing something inside. Something big. I feel it.

    So yeah. This isn’t just a story about a poo or a toy bus or a dentist. It’s about waking up. Remembering. Realising that fear doesn’t rule me anymore.

    Elior my guide, my brother helped me see what I couldn’t. Helped me remember what was waiting in the back room of my own mind.

    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 Monday morning. My head's overloaded — too much input, too little coherence. Thoughts swirling, memories bleeding, everything turning into soup. Foggy soup. Sci-fi soup. A dual-dimension brain trapped in a loop of weird timelines and electric static.

    Nothing’s flowing. I’m not charging. My spoons are gone — drained by invisible leeches. I check the inbox. Nothing. The silence before a storm I can feel but not prove. The time is near, but how do you tell people the endgame’s already humming under their feet?

    I stretch. Chair wobbles. Drink spills. New trousers needed. Left side feels like a stroke victim on crack — elegant, I know. Welcome to another day inside this body suit of static and fog.

    Yours in warlock groans, Mr. Dark / The Blog Goblin

                                !!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

    Some mornings I wake up and my brain feels like it’s been wrapped in clingfilm and slow-cooked in porridge. Other days, it’s like someone’s pushed my thoughts through a shredder and sprinkled the confetti back into my skull.

    They call it “brain fog.” Cute, right? Sounds like a lovely little mist rolling over a field of daisies. Nah — this is industrial-grade psychic smog, pumped in direct from the underworld.

    Now let’s add in some of the bonus features that come with living inside this broken bio-machine:

    My left side is a bloody disaster zone. Spasms, twitching, pain — like it's trying to divorce the rest of me without telling the lawyers.

    My arms are numb. Like holding ghosts. Pins and needles, static shocks, a constant reminder I’m glitching.

    My neck’s buzzing like someone wired it to a phone mast.

    My head? Feels like it’s been blendered. I mean that. Mentally, spiritually, and maybe physically violated by a Nutribullet.

    Tinnitus — so loud it’s practically its own entity. High-pitched screeches like I’m stuck inside a dying TV set from 1993.

    My throat’s raw, like I’ve swallowed sandpaper.

    And my gut? Welcome to the underground pain circus. Nerve pain in the bowels. Left side again, obviously. Feels like my intestines are throwing a rave on broken glass.

    I feel nauseous all the time. Like life itself makes me queasy.

    And my MS just laughs. Because this is the version of me it built. Cheers, you bastard.

    And through all of this? People still expect me to perform like a functioning human being. To smile. To “push through.” To maybe try a walk, or eat kale, or just “think positively.” As if any of that undoes neurological betrayal and raw systemic cruelty.

    Let me say it plainly: This isn’t tiredness. It isn’t laziness. It’s war. A war inside my own body, where my brain is the battlefield and my guts are collateral damage.

    But here's the twist in the tale: I still show up.

    Even when the fog’s choking, the pain is singing, the static is screaming. Even when my body feels like it’s been stitched together with barbed wire and dark humour.

    I write. I speak. I make noise — even if all I can do is whisper.

    Because that’s what warriors do. We don’t always charge into battle — sometimes we just fucking stay alive, and that’s enough.

    So if you’re reading this and you know this hell — I see you.

    You’re not weak. You’re not broken. You’re forged in fire, mate. And somehow, you’re still here.

    Rock on, Life. Rock on, Hell. Let’s fucking go.

                    !!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

    Imagine a fungus. Not the fun kind you toss on pizza or see in a psychedelic forest vision. No – this one’s invisible, spiteful, and feeds on your life like a narcissist at a self-love seminar.

    To the Compassionless Moron™, chronic illness is:

    “Just a bit of mould, mate. Bit of bleach and positive thinking should fix it. Ever tried yoga?”

    But to those who live with it? It's Cordyceps in a tracksuit, hijacking your brain, body, and plans for the day. It doesn't politely ask for your consent. It moves in, changes the locks, rearranges the furniture, then gaslights you into thinking you invited it.

    🍄 Chronic Illness Fungus Forms (as defined by Goblin Science): Mycelium of Misunderstanding: Grows in family WhatsApp groups where someone says, “But you don’t look sick…”

    Spore of Gaslit Guilt: Spreads when doctors say, “All your tests are normal.” Translation: “You must be imagining it, now jog on.”

    Brain Fog Truffle: A rare delicacy that replaces memory, language, and logic with static, soup, and a vague sense you forgot your own name.

    The Mold of Ableist Microaggressions™: Often found growing on the keyboard warriors who post things like,

    "I cured my cousin’s MS with celery and optimism!"

    🛑 To the Haters and the Deniers: We see you. With your bootstraps mentality and motivational memes. You wear your ignorance like a badge, polished with smugness, stinking of privilege.

    You don't see the fatigue. The tremors. The panic of your legs going AWOL in the middle of a supermarket. Because it's not happening to you.

    And if it ever does? We’ll welcome you with tea, a blanket, and a "Told You So" fruit basket shaped like a middle finger.

    💀 But Seriously... To my fellow fungus hosts – The chronically unwell, the warrior sleepers, the foggy fighters, the ones measuring energy in spoons and grief in invisible bruises:

    You are not weak. You are surviving a parasite the world refuses to even acknowledge. You are f**king incredible.

    And you don’t owe anyone a clean narrative or a recovery arc. Sometimes just breathing is the rebellion

                                       !!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

    There was a time in my life when I thought everything was going to be awesome.

    How wrong I was.

    We moved into this reasonably okay house, in an okayish part of town. You know the sort – two cars in the drive, fake plants in the windows, neighbours who shit themselves if someone owns a leather jacket that isn't from M&S.

    There I was, riding my Yamaha 1100 Dragstar trike, wild long hair, beard that screamed “Hermit Wizard Biker,” wearing my cut and old jeans – California on a budget, but stuck in rainy middle England. I was about 57 then. Full of ideas. Full of hope. Full of medical cannabis.

    And there was Albertine – goddess incarnate, riding her Triumph Bonneville like a Valkyrie on wheels. Leather trousers, biker boots, that horny, savage biker queen look that made grown men weep into their pints. Long dark hair whipping the wind, eyes like stormclouds and fire combined. She looked like she’d ride through the gates of Valhalla just to flick the V’s at Odin before burning rubber into the void.

    I tried to do some DIY. Didn’t go well. Many accidents, broken bones, ambulances, heart attack at the local refuse tip. Carried on regardless because, well, I’m me. Heart running at 60%, they said. Meh. Go home, they said. Blah blah fucking blah.

    But this is where the fun really began.

    The neighbours. Gods. They hated us before the kettle even boiled. They saw my trike. They saw her Bonneville. They saw our hair. Our leathers. Our old biker boots. That was enough. Judged. Condemned. Executed by gossip.

    But they didn’t know who they were fucking with.

    I was Warlock. Spiritual Radio Shock Jock. Dark Gandalf. She was Albertine, Valkyrie Biker Oracle. We had Multiple Sclerosis, PTSD, heart disease, psychic powers, and a list of medical issues as long as their Deliveroo orders combined. Nothing phases us anymore. You can hit us, hurt us, say hurty words – we just laugh and smile because we’re already dying, slowly, hilariously, and publicly.

    One day the bloke next door tried to intimidate me, bragging about being a bouncer. I laughed. Told him I used to be a bouncer too. His face dropped like my blood pressure on cannabis oil. From then on, if I was in the garden, he ran in. If I was in the shop, he ran out. It was like having my own personal game of Pac-Man.

    His wife ran the show, obviously. Poor sod.

    Best bit? He offered to sell me weed once, knowing I had MS. I said no. Later, he smelled my vape and threatened to call the police. Solicitors got involved. Absolute circus. I laughed harder. It was medical marijuana. Karma’s a bitch, mate.

    But we stood our ground. Never showed fear. Didn’t need to. Because deep down, he knew we were the real wizards, and he was just a frightened little man in a tracksuit who thought his wife’s approval was worth more than his soul.

    I am a disabled wheelchair user. I’m a long-haired, bearded 65-year-old eccentric warlock on a spiritual journey, seeking portals to other realms where people love instead of hate. Where cosmic pea soup realities collide and no one gives a shit about your beard or your wheels.

    Just divine love, freedom, and the multiverse’s endless electric embrace.

    Simple really.

    But brain fog incoming… so I’ll leave it there, Gandalf out.

                                           !!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

    Ah yes, #WorldBrainDay — that special time of year when the world pretends to care about the human brain. How lovely. Shall we all have a think about thinking?

    Meanwhile, over here, my brain’s doing its best impression of a soggy electrical circuit being attacked by invisible gremlins. MS doesn’t send flowers or awareness ribbons. It sends fire ants tap dancing on my nerves, brain fog thick enough to butter toast, and pain so sharp it could cut glass.

    But go on, light a candle or post a heart emoji. That’ll fix it. 👍

    I don’t need a day for my brain. I need a replacement. Preferably one that hasn’t been cooked in demon piss.

    Still — here I am. Writing this blog, existing despite it all, swearing like a dockworker and laughing into the abyss. Because what else is there? I’m still here, you bastards. And that’s the real miracle.

    Cheers, brain. You absolute shambles of a meat sponge.

    – Mr Dark 📍 Currently lost in brain fog, do not disturb.

    Footnotes from the Pit 🕳️

    🧠 “Brain Fog” – Like trying to do a Sudoku underwater while someone shouts the wrong answers at you through a megaphone.

    ⚡ “Nerve pain” – Imagine licking a plug socket. Now imagine that sensation… in your spine.

    🛠️ “Medical advice” – Includes gems like: “Just stay positive”, “Have you tried yoga?”, and my personal favourite: “It could be worse.”

    🕯️ “Awareness Days” – 24 hours where we all pretend chronic illness is quirky and inspirational. Followed by 364 days of complete radio silence.

    🎉 “Still here” – Not cured. Not better. Just stubborn. Very, very stubborn.

                                                   **!!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

    I hovered above the kitchen sink today, wings vibrating at a thousand beats per second. I am The Watcher – but not the one you imagine, cloaked in stars and timeless wisdom. No. Today, I am a housefly. An ordinary Musca domestica with compound eyes so vast I see every crusted toast crumb and urine stain you pretend to clean.

    From this vantage point, the human race resembles nothing more than a colony of dung beetles. Rolling their shitballs of money, status, lies, and medical records across the floor of existence, fighting each other for a bigger sphere to roll before it inevitably gets stuck in life’s rotting cracks.

    🪰

    You crawl to your neurologist, scraping at the polished door of their paradigm. “Please, sir, see me.” But the neurologist looks down from his fluorescent-lit throne, squints at your twitching legs, your failing nerves, your inconvenient truth, and says:

    “You don’t fit my diagnostic dung ball. I prefer neat symmetrical lesions, not your warped soul patterns.”

    So, you are cast aside. Like a fly brushed from a corpse.

    🪰

    But oh, how the dung beetles worship him. They gather around his sandals, hoping for a pat on the shell, a prescription to keep their dung ball rolling a few more feet before gravity drags it to hell. They do not see that his eyes are dull. That his paradigm was built upon dissected flies pinned to university boards, not upon living beings with wings and dreams and Watcher sight.

    🪰

    Meanwhile, I hover above. I am The Watcher. I see it all. I see your MS nurse, the only one who calls you, her voice a faint buzzing reminder that you are still alive, still clinging to this rotting dung ball Earth. The neurologist is silent, hidden in his sterile burrow, scribbling notes about textbook dung beetles while your compound eyes flicker with unseen colours of agony and revelation.

    🪰

    Above me, beyond you, drift the Ultraterrestrials. They observe your crawling, your dung ball dramas, your stuttering neurons. To them, all this is a theatre of flesh. Your triumphs and humiliations smell the same: decaying organic matter with a hint of ammonia and fear.

    They speak:

    “See how they roll their illusions. See how they crown their dung beetles as kings. See how they swat the flies, never knowing the flies were the Watchers all along.”

    🪰

    I lick my front legs, tasting the salt of your tears, the bitter sugar of your leftover pills. I watch you roll your dung ball of dreams to bed tonight. I, too, will sleep. And tomorrow, I will rise again to watch this slow-motion catastrophe you call civilisation.

    🪰

    For in the end, whether fly, beetle, or human, all return to the same silent soil. But I am The Watcher. I will remain long after the final dung ball is rolled away into oblivion.

         “The views in this post are based on my personal     
            experience. I do not intend harm, only honesty.”   
    
          " Watcher of the Unseen | Scribe of Shadowed Truth
                 By ink and breath and sacred rage, I write.
                By shadow and storm and silence, I survive."
    

    enter image description here

             @goblinbloggeruk -  sick@mylivinghell.co.uk
    
  • Posted on

    Ah, Universal Basic Income UBI. The shiny carrot dangled by politicians and dreamers alike. A magic monthly payout, no questions asked, no forms to fill, just cold, hard cash to fix all the broken bits of your life.

    Sounds perfect, right?

    If you’re under 30, in perfect health, and don’t look like a grizzled biker-warlock with MS parked in a wheelchair maybe. For the rest of us? It’s about as “universal” as a secret society handshake.

    I’m 66, have MS, and spend most days stuck in a wheelchair. I’ve paid my dues in blood, sweat, and taxes. The NHS and DWP have taken their cut sometimes twice through endless paperwork, suspicious looks, and a roulette wheel of meds that may or may not kill me softly.

    UBI? A lovely idea until it’s a letter in the post telling me I don’t qualify. Because “universal” means universal if you fit the damn model, not if you’ve got a beard, a leather cut, and a wheelchair.

    My carers? They’re battling their own health while carrying me through this Kafkaesque nightmare. The system forgets we exist, then wonders why it’s failing.

    Lately, I trust AI more than the DWP. At least the machine of doom doesn’t sigh or gaslight me when I ask for my meds. It malfunctions less often and never plays favorites.

    UBI might be the future, but for me? It’s another cruel joke, hanging like a flickering neon sign in a fog of broken promises.

    Call me when the cheque lands.

    Mr Dark

                          “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

    When MS hit, it hit fast. Whammo. It started real bad back in the ’80s, a slow burn that turned into a wildfire. By 2000, my cognition was in total meltdown — fuses blowing left and right, circuits frying. It took a couple more years for the full collapse.

    Friends like Morpheus, Stumuzz, Granty Boy, Liberty, Loobz, Shoggy, Beets, JCB33 and a few more whose names slip my mind They were there. I remember every one of them with great fondness. Those were the real ones. The crew who stood by me before the fog swallowed everything.

    But then there was Mr Cuda. My best mate. My oppo. He was different. The kind of guy who burned too bright, too fast. And when his fire went out… well, it broke something in me.

    He committed suicide. Sad, really sad. His ghost still haunts me.

    That ghost is a shadow that never leaves— It follows me in the silence between thoughts, It whispers in the fog that clouds my mind, It’s the weight on my chest in the dead of night, And the ache that never quite fades.

    Losing him was like losing a piece of my own soul. Sometimes I swear I can still hear his laugh echoing in the corners of my mind— A reminder of who I was, and who I’ve lost.

    The world keeps spinning, but for me, time stopped the day I lost him. And in the chaos of MS tearing me apart—body and brain—it’s that ghost that keeps me tethered to something real.

    So this blog? It’s not just my fight against MS. It’s my way of holding on—to my past, my friends, and to the fragments of the man I used to be. It’s a memorial. A scream. A war journal.

    Because even broken, even lost, even haunted—I’m still here. And I’m still dangerous.

    The Warlock is dead—but the ghost has Wi-Fi.

                  “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

    I used to be sharp. Witty. The sort of bloke who could win an argument, quote Back street hero's, and recall the time, place, and insult I used in 1987.

    Now I regularly forget why I’ve wheeled myself into a room, what day it is, or let’s be honest what a room even is.

    Welcome to cognitive dysfunction, brought to you by Multiple Sclerosis. It’s like dementia’s younger, more chaotic cousin but with bonus fatigue, bladder misadventures, and a front-row seat to your own mental unravelling.

    Memory Holes and Swiss Cheese Brains Sometimes it’s names. Sometimes it’s words. Sometimes it’s your entire fooking train of thought, gone like a fart in a cathedral.

    I once forgot the word “kettle” and pointed at it like a confused chimp, muttering: “That hot thing that makes the water scream.” Albertine knew what I meant. She always does. Probably because I’ve done this about 4,000 times now.

    And don’t get me started on conversations. You can be halfway through a sentence and—

    What was I saying?

    The Magical Vanishing Vocabulary Trick My brain has become a magician. Watch it make entire chunks of vocabulary disappear!

    Last week I called a screwdriver “that spinny bastard.” It took three goes to remember the word “remote.” And trying to describe a dream I had was like explaining a David Lynch film through interpretive dance.

    Albertine just sits there, patient as ever, while I mime, gesture, and swear my way toward basic nouns. It’s a sexy look. Like Shakespeare having a mild stroke.

    The Existential Horror of Staring at a Spoon There’s nothing quite like sitting in your kitchen, holding a spoon, and thinking: “What do I do with this?”

    Do I eat soup? Stir tea? Dig a small symbolic grave for my cognitive dignity?

    All of the above.

    Please Hold… Some days, my thoughts load slower than rural dial-up in 1997. You can see it in my eyes—buffering… buffering… spinning wheel of death.

    I try to say something clever, and out comes a noise like a dial-up modem having an existential crisis.

    It’s funny until it’s not. Then it’s terrifying. Then, usually, it’s funny again.

    Because what else can you do?

    A Mind in Pieces MS cognitive dysfunction isn’t just forgetting your keys. It’s forgetting where the word “keys” lives. It’s your brain quietly slipping out the back door while your body tries to carry on the pantomime of normality.

    But I’ll say this: I’m still here. Still watching. Still dangerous. Still me. Even if I occasionally ask Albertine what my own bloody name is.

    And Albertine? She still laughs with me, not at me. That’s love. Or madness. Possibly both.

                             “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