Multiple sclerosis  is My Living Hell

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  • Posted on

    It’s a lovely English morning by which I mean it’s grey, wet, foggy, and has all the charm of a forgotten Victorian asylum. The sort of weather that makes you feel like something wicked this way comes… probably dysentery.

    But the real storm wasn’t outside. Oh no, that was merely atmospheric foreshadowing. The real chaos came from within, unleashed by my optimistic decision to try a “clean eating” article—free from gluten, dairy, sugar, joy, and apparently, sanity.

    Reader, it lied.

    What I ingested was not food, but an unholy catalyst a dietary Trojan horse packed with demonic forces. Within the hour, I was transformed from your friendly neighbourhood MS blogger into something between Linda Blair in The Exorcist and a firehose with feelings. Explosive vomiting? Check. The other end? Think Pompeii, but more intimate.

    I spent the night oscillating between the porcelain throne and questioning my life choices. At one point, I was so violently ill that I swear I transcended my body. A full chakra-cleansing purge, complete with a hot shiver that rattled even the bits of me that are usually numb. You know it’s bad when you’re mid-vomit thinking: “Well, this is new.”

    And now, in the aftermath, here I am wrapped in a blanket, scrolling through the digital madhouse formerly known as Twitter (now "X" because even the platform had an identity crisis). Everyone’s losing their collective minds over the NHS again, and I get it. Believe me, I get it.

    Because while they all tweet, I get texts from my chemist like I owe them money and blood. “Your prescription is ready,” they say, as if it’s a treat. Last time, the robot in the pharmacy spat my meds out like an angry fruit machine, accused me of breaking it, and gave me someone else’s Drugs!. It’s a bit like Russian roulette but with fewer rules and more incontinence pads.

    Doctors? Oh, I’ve had a few. Some good. Some gaslighters in lab coats. The kind who think if you’ve got long hair, a wheelchair, and a beard that says "I summon demons for breakfast", you can’t possibly have a brain worth listening to.

    Case in point: my neurologist. Last seen alive eight years ago after I accidentally shattered his middle-class expectations. He took one look at me, as I rolled in with my biker cut and Electric wheelchair, and you could see his soul try to leave through his sphincter.

    But here’s the plot twist they were wrong about me. I’ve taken control. I’ve gone alternative. My AI doesn’t lie, and it doesn’t sigh and look at its watch when I speak. I’ve sorted out my own care better than the revolving door of NHS disinterest ever did.

    So yeah, rant over. Or rather, volume one concludes. Because the journey dear reader continues. And it’s paved with codeine, caffeine, and a healthy dose of "sod this for a game of soldiers."

    Cheers.

                       “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
    
  • Posted on

    So Monday morning rolls in like a drunk ghost with a hangover. The plan was simple: limp the van to the garage, smile through the quote, and pretend life wasn’t an endless endurance test. Instead? I woke up feeling like absolute hell.

    The tinnitus was howling in my right ear why the right? No bloody idea. Maybe it's trying to whisper cosmic truths from the land of the dying neurons. Or maybe my brain’s just bored and wants to recreate a factory floor soundtrack.

    Then came the message. One of my dad’s friends. My father—aged 90, tough old bastard that he is—has had another fall. A serious one. Condition? Not good. I felt it. No, not in some woo-woo psychic TikTok way. Just that grim knowing. He’s nearing the end of his road. And I hate it.

    Here’s the twist most folk don’t know: I’ve only known him since 1999. That’s when I tracked him down in New Zealand, after decades of being the state’s little secret. Turns out I had siblings. More ghosts in the family cupboard. We Skyped until Skype did what all modern tech does it stopped working and caused chaos. He struggled with computers (who doesn’t at 90?), so we switched to WhatsApp.

    We actually spoke last week he’d just had another heart attack and a previous fall. Still sharp. Still Dad. But I sensed the edge then. The slipping. And now it’s here.

    The Origin Story? Grim as Fuck. I was adopted at six weeks old, plucked from a “mother and baby unit” and handed to the new parents from hell. The sort of couple that make Dickens’ villains look like amateur dramatics. If you've read this blog, you’ve seen bits and pieces of that trauma circus already.

    And today? Today the past and present just smashed together. The man who gave me half my DNA is slipping away, and I’m sitting here sweating like a water tap on steroids, tinnitus screaming, hugging a pillow like a lost child, and Ozzy’s voice clawing its way through the noise. When it gets worse? It’s Motörhead time.

    I just want to ride hard again. To feel the wind rip through my hair. But instead, I’m stuck here in this twisted freakshow of cognition, fatigue, grief, and biological inheritance.

    Still, what can you do? Welcome to my world of weirdness. Population: me, and maybe a couple of dead kings.

    🚐 For Albertine She’s the one who drives when my body won’t, the one who holds the wheel when the road blurs, and the one who doesn’t flinch when the darkness hits. Without her, I wouldn’t get far not to the garage, not through the grief, not through the noise. Albertine: my co-pilot through this living hell. And the reason I’m still in the fight. Always.

                         “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

    Well, it’s Sunday night. The fan’s finally given up its struggle, limping down to slow like it’s seen too much nonsense today. Outside, the air smells stormy clouds gathering like some cosmic joke about to unfold. Perfect weather to match the chaos inside my head.

    Why am I staring at the same damn piece of paper? How many backups do I have? A ridiculous amount. Twice over, because apparently my brain is the gift that keeps on glitching. Cognitive fog? Oh, it’s not just fog, it’s a full-blown London pea soup, and it’s thickening.

    Am I losing it? MS or some other unholy curse tangled deep inside me? Questioning sanity is a new hobby, right next to forgetting why I walked into the room or what day it is. At least when I screw up, I forget about it soon after silver lining or just a cruel joke?

    I’ve got notes everywhere, scribbles, reminders, basically a paper trail that looks like a conspiracy theory board. Which, spoiler alert, leads perfectly into the next post a tin foil hat special. Prepare for some mind blowing madness. Or just madness. Either way, you might never come back to read what happens to this thoroughly fucked-up dude chasing answers nobody wants to give.

    So, seriously does your MS come with its own brand of weirdness? I’m all ears (well, eyes). Need to swap war stories or just shout into the void together? Hit me at sick@mylivinghell.co.uk. I promise I’ll get back eventually probably after a nap or a freak-out session.

    Meanwhile, I wait for the storm, my body aching like it’s been in a fight with life itself. No spoons left in the jar today.

    Cheers to the chaos.

                         “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 are some things in life that simply refuse to behave. The British summer. Cats. Me. And Triumph motorcycle engines from the 1960s. But if you've ever lived with Multiple Sclerosis, you'll know there’s a kind of kinship between these two bastards one mechanical, the other neurological both eager to ruin your day, soil your pants, and leave you stranded in the middle of nowhere, questioning your life choices.

    So, for those nostalgic for the golden age of British engineering disasters, and those unfortunate enough to have MS riding pillion in their spine, here’s a lovingly bitter side-by-side breakdown.

    Feature Multiple Sclerosis Triumph Engine (1960s)
    Origin Immune system says, “Let’s attack the brain!” Built by blokes with tea in one hand, doom in the other.
    Leaking fluids? Oh God yes. From places you didn’t know had valves. Constant oil leaks. Might as well park it in a drip tray.
    Unreliable starts You might stand up. You might fall over. Might roar. Might fart. Might just sulk.
    Temperature tolerance “Too hot” = meltdown. “Too cold” = rigour mortis. Overheats if you look at it with warmth.
    Wiring/electrics Nervous system shorts like an angry Christmas tree. Lucas electrics: worshipped by Satan for unreliability.
    Stability Think Bambi on rollerblades. Handled like a wheelbarrow full of snakes.
    Noise Groans, spasms, screams (from you, not MS). Clangs, bangs, and that whimper you make when it backfires.
    Smell Eau de hospital and dread. Petrol, grease, and regret.
    Maintenance Pills, physio, meditation, screaming into cushions. Spanners, gaskets, beers, swearing at God.
    Support Carers, NHS, forums full of other warriors. Biker forums full of PTSD and spare parts.
    Breakdowns Anywhere, anytime, always embarrassing. Usually halfway through a roundabout in front of a bus.
    Reliability Think weather forecast from a Ouija board. More mood swings than a drunk ex at a wedding.
    Moments of joy A good day feels like flying. When it starts, you cry and ride it like it’s 1969.

    So What’s the Verdict? Whether it's your spine giving up or your primary chain exploding, both MS and Triumphs come with the constant thrill of wondering:

    “Will I make it to the toilet... or the next town?”

    Both are British. Both make a mess. Both give you stories. Neither gives refunds.

    But at least the Triumph didn't eat my nervous system with a spoon.

                    “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

    Those were the days roaring down the A40 towards London town, loud enough to make the locals cover their ears. Hair and beard whipping in the wind like I was some kind of mad Viking god, my open-face helmet barely hanging on as speed lifted my lid like a pissed off gull.

    Then another bike, coming towards me brother nod, that silent salute of chaos. I smile wryly because I’m young, alive, and damn proud. We carve into the night, the city lights dimming behind us, the old bike chugging along like a beast reluctantly waking from a hangover.

    My brothers riding beside me, shadows at my back, all of us swallowed by the roar, the stink, the madness. Food stalls on trollies, the sickly sweet stench of exhaust fumes, oil, sweat—like perfume for the damned and the wild.

    I was proud in my Originals, leather and cut stitched tight like armor. A proud bastard, alright. Yeah, we got into a few punch-ups got jumped, got wrapped in chains, got battered enough to know pain well. But after every fight, I bought the bastard a drink. Because testosterone fueled rage somehow always ended in laughter and stupidity.

    That music, that scene you had to be there to believe it. Pure madness. Brotherhood not just a word, but a life raft in the storm.

    Now? Most of those wild bastards are gone, forgotten in the void, ghosts in the wind. And here I am, caught between worlds, still chasing the question: What the hell was it all about?

    I’ve been down the rabbit hole and seen the shit no one wanted to believe. Weather engineering, conspiracies, the things I shouted into the void only to be called mad, eccentric, a tin-foil hat wearing nutcase.

    Turns out surprise surprise I was right. And silence was the price I paid. Shut down, censored, my eight-year radio career ended cold because the “safe” didn’t want to hear the truth.

    Hence this blog. My refuge. My last roar.

    Still, I’d rather be riding into the wind with Albertine along those endless Westcountry roads—wild, free, and unapologetically alive—than stuck in any safe place pretending to be sane.

                             “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

    Today I think I may evaporate.

    Not metaphorically, either I mean literally melt into a glistening puddle on the floor like the wicked witch of Walthamstow. The heat is biblical, the air thick with resentment, and if this goes on much longer, someone’s going to find a beard and a pair of shades just floating where a warlock once sat.

    It’s too hot for coherent thoughts, so obviously the brain’s doing backflips and the MS has decided to turn the “cognitive dysfunction” dial up to 11. Words don’t just escape me they actively mock me. I sit here smiling, half-lucid, fully furious, fully me. Because no matter what the system, the diagnosis, or the temperature says I know I’ve got more to give.

    They wrote me off just before my state pension, bless them. Nice timing. But I’m still here, inconveniently alive and louder than ever. The nerves in my gut are throwing a tantrum, my stress levels are spiking like a dodgy ECG, and to top it off the last of my savings waved me goodbye this morning. Cheers, love. Don’t call.

    But here’s the kicker: I’m still smiling. Not because I’m some chipper TikTok disability guru with fake eyelashes and a ring light, but because I’m free. I don’t belong to any bloody wing of politics. Left, right, centre? You’re all still part of the same bird, love and it’s got mange. The world they squawk about isn’t mine. Mine’s quieter, darker, more honest. My world is real. Full of pain, insight, weirdness, and the kind of laughter that sounds a bit like crying.

    You see, I’m part of something else. The One. The Everything. The Divine Love. That throb in your chest when you’re alone and honest that’s where I live. I wish peace and healing to every poor soul who stumbles across this digital haunted house I call a blog. Because no matter where we are, what we’re facing, we can change. It’s inside us all. Just buried under decades of fear, trauma, and daytime television.

    We’re at a crossroads now, all of us. Some of us limping, some of us rolling, some of us dragged along by sheer bloody spite. But destiny’s cracking her knuckles. Evolution’s knocking at the door, and if you’re still wearing your silly little face mask of denial—best take it off now. Truth stinks, and it’s getting in anyway.

    I’m not afraid of death. I’ve danced with it enough times to know its rhythm. I’ve looked into its eyes and said, “Not today, mate. I’ve got a blog post to write.” And as I sit here dripping, broke, buzzing on antihistamines and maybe the ghost of Mary Jane, I realise I’m on another plane entirely. One not many choose to visit. It’s dark, yes but in that darkness, you’ll find the light. The real light. The kind that doesn’t need electricity or permission.

    So yeah. It’s hot. The world’s on fire. I’ve got no money, and half my neurons have buggered off on holiday. But I’ve never been more alive.

    To all of you peace, healing, divine truth. Go find your demon and kiss it on the mouth. That’s how we win.

    Mr Warlock 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

    Let’s talk piss and shit. No frills. No sugar. Just the raw, soggy truth of what it’s like when your body declares independence from basic toilet protocols.

    Bladder Hell: The Yellow Frontline Ah yes, the dreaded leak that moment you realise your trousers are no longer allies but soaking, complicit traitors. I was in my 40s when my bladder started acting like a temperamental toddler on a diet of Red Bull and rage. First it was the "can't pee" problem standing there like a statue, nothing but the occasional drip as if my urethra had stage fright.

    Then came the grand reversal: involuntary leaks. And by "leaks," I mean a full-scale Niagara event, unprovoked and unapologetic. I tried everything. No drinks after 5pm. Strategic peeing. Mental negotiation. Nada. Still I’d wake up in a puddle like some pissy version of The Little Mermaid.

    Doctors? Oh please. Gaslit for 40 years. "Well, you're getting older." "Try pelvic floor exercises." Mate, my pelvic floor is about as stable as a jelly trampoline.

    But here's the kicker: you learn humility. You either cry about it or laugh darkly while rattling down the road in your three-wheeled piss trolley of doom, trailing a golden hue and existential dread.

    The Brown Files: Tales from the Other End If the bladder doesn’t get you, your bowels surely will. MS gives you the delightful choice between constipation so hard it requires an exorcism, or the soft, sticky sneak attack that turns underwear into a crime scene.

    Let’s break it down:

    Numb arsehole? Check.

    Dead rectal nerves? Of course.

    Surprise poo party mid Tesco visit? You bet.

    Walking like a guilty toddler trying to hide it? Standard.

    Doctors again? "Try laxatives!" Yeah, thanks. Nothing like chemical napalm to turn your ring into the gates of Mordor. You want a real solution?

    💡 Hydration. 💡 Diet. 💡 And a bloody bum washer.

    That’s right. Stop sandpapering your crack with cheap loo roll. Install a bum washer attachment. Use aloe wipes, keep essential oils to hand, and for the love of whatever gods you follow, always carry spare underwear.

    Because nothing screams confidence like shitting yourself in public and power walking with a face like you've seen God and he was laughing.

                           “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

    So, the sun's out.

    People always say that like it’s supposed to matter. Like the sunshine will somehow bleach away the stink of stress, misery, and existential rot we’ve all marinated in. But no, not today.

    Everywhere I look—grey faces, furrowed brows, clenched jaws. The living are shuffling around like they’ve already died and just haven’t filled out the paperwork.

    You can feel it in the air. That sick, metallic taste just behind the throat. Like a storm coming—but it's not weather. It's something worse.

    The Beast is loose.

    Not a myth. Not a metaphor. The Beast is the government—spun in grey suits, slick with power, blind with bureaucracy. It snarls in Parliament and drools through policies written in wine bars and cigar smoke. It doesn't walk—no, it slithers, unseen, through headlines and benefit assessments and the knock at the door when they tell you you've been sanctioned because you didn’t prove you were still dying hard enough.

    The Beast doesn’t eat food. It eats hope. It feasts on the disabled, the poor, the mentally ill. It sniffs out despair like a pig with truffle-sensitivity and fangs.

    And everyone’s playing the game. Eyes down. Pretend it’s not real. Pretend the letters on your doormat aren’t demands. Pretend the nurse didn’t just quit. Pretend the care home isn't full. Pretend that universal credit is anything but a slow-motion mugging.

    Pretend we’re not already in the wasteland.

    Dystopia isn’t coming. It’s here. It’s been here since we sold out compassion for efficiency. Since we decided that spreadsheets were more important than souls.

    Orwell didn’t write fiction. He wrote a bloody user manual.

    And those of us who do see?

    We get dragged into the pit together. The mentally bruised. The physically wrecked. The ones who've been through the grinder so long we’ve learned to taste rust and call it breakfast.

    We don’t want your sympathy. Keep your pity. All we want is honesty.

    We are not fine.

    We are surviving the Beast. Every. Single. Day.

    And some of us have found ways to ride the storm. Me? I light a little herbal incense—strictly spiritual, of course—and let the fumes blur the edges of this living nightmare just enough to laugh.

    Because what else is there?

    So welcome, friends—new and old. Welcome to my nightmare. It’s not a dream. It’s not a metaphor. It’s my life, and maybe yours too.

    Join me. Take my broken hand, my burned-out nerves, and we’ll skip merrily into the depths of cognitive collapse together.

    Bring a torch. And a sense of humour.

    You’ll need 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