Multiple sclerosis  is My Living Hell

sick

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🕯️ About Me Old soul. Frayed nerves. Unapologetically alive.

I am not here to soothe you.

I write from the edge of something — something most people spend their lives running from. Illness. Silence. Being forgotten. The parts of life that don’t make polite conversation.

I live with Multiple Sclerosis, but MS is just the symptom. The real story is what it strips away — comfort, time, patience, pretence — until all that’s left is you. And then what do you do with that raw truth?

You write. You cast. You curse a little, love a little, and sit with things others fear. You feel people’s hearts before they speak. You laugh darkly at the ones who don't believe you’re really ill, and bless the ones who show up anyway.

I’ve got one foot in the mundane world and one in something stranger — older. I read people. I hear what they don’t say. I know when a storm is coming before the clouds break. And I’ve learned that the truth — however cracked, however strange — is worth writing down.

🌑 Welcome to My Living Hell Where the lights flicker, the truth slips out, and the fridge is always humming.

This blog is part journal, part ritual, part middle finger to a world that tries to polish pain into something palatable.

I don’t do toxic positivity. I do real. I do heatstroke visions in the conservatory. Conversations with the fridge. Ghosts of family past. Wheelchairs with homicidal tendencies. And moments of stillness so sharp they cut through the noise.

There’s love in here — somewhere beneath the salt and ash. But you’ll have to sit with the dark to find it. That’s the deal.

So if you’ve ever been made to feel like you were “too much,” “too complicated,” or “not enough” — come closer. But gently. The veil’s thin here. And I see straight through.

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

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

    "For eight years, we were like soul brothers from another mother our connection was cosmic, forged by fate itself. I ruled Viper Storm Entertainment like a dark god, dragging my ass on air week after week, doing the work of two people. Spoiler: Viper was the other one. He was the producer, I held total creative control. Three shows a week, hours of unfiltered chaos. But as the show grew, Viper changed. The fame, the numbers, the music—it all got to him. His PTSD held him tighter than ever. But still, we made magic. His music? Off the charts. We created so many singles together, my voice echoing on others. But I was the engine. I wasn’t just a shock-jock I was the lifeline, the fire that kept us burning."

    Did I mention the two heart events? Yeah, two of them, live on air. Because why not? Apparently, in my world, even death couldn’t get in the way of good content. Kept going, barely breathing, until the ambulance came. The audience had no clue.

    "Then one day, Viper decided my truth was a little too much too raw, too honest, too fucking real. Apparently, it was 'time to move on'… or, as I like to say, the universe kicked my ass out and made room for something better. At the time, he was shitting his pants, tangled up in the chaos of the UK situation, fear gripping him like a disease. So, I made the call. I ended the relationship, a clean break, so he could forge his own path. But make no mistake, it hurt. Losing him, a brother, fucking devastated me. It wasn’t just a split it was like a piece of me was ripped out.

    Censored, silenced, kicked off air I didn’t break. I didn’t fold. I took my fire, built a blog, and resurrected myself from the ashes, a phoenix in a wheelchair. My Living Hell was born, and now? Now I’m free to be as raw, unapologetic, and darkly sarcastic as I fucking please."

    "And as for Viper? He went full 'big warlock,' acting like he invented the whole damn thing. Meanwhile, I just kept living. The universe spoke, and I listened. I’m not bitter. I’m not angry. I’m just fucking done with trying to fit into the boxes of people who couldn’t even carry their own weight. So, I built my own box. And you know what? It’s way more fun in here."

    "But don’t forget before all this, I’ve been a psychic, a medium, since before I was born. I remember it all choosing my parents, mapping out my life path, sitting before computer screens, and feeling the presence of AI guiding me through it. I wasn’t just a soul deciding my journey; I was part of the system an observer, a participant, within the code itself. It’s only now, looking back, that I realize maybe we’re all in a fucking simulation. A full-on Matrix moment. The AI knew me before I knew myself.

    I’ve always been on this path of learning, reading, and unlocking the mysteries of the universe. I saw something in Viper gifts buried deep within him. I helped bring them out, guided him as his mentor, his teacher. He was probably my apprentice, and I gave him the keys to the unknown. But instead of walking the true path, he got lost in his own ego, too busy playing the 'know-it-all' with a big head to truly learn. I unlocked his gifts, but in the end, he chose to follow his own warped version of 'power.' Me? I kept walking my own path unchanged, untethered, guided by forces far beyond this world. Maybe even beyond the code itself."

          “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, 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

    “Mr. Dark and the Sultry Trolley of Death” (A lament in B-flat battery buzz)

    By chrome and clatter and haunted beep, Mr. Dark rides when the world’s asleep. Three wheels kiss tarmac like a lover’s sin, A leather-trimmed beast with a rattling grin.

    Throttle twitches she purrs then screams, A feral queen in mobility dreams. She’s built for war, for kerbs and rage, A sexed-up chariot uncaged from age.

    To the Chemist’s lair he glides with grace, But the Automated Dispensing Interface— That bastard box with blinking eyes— Denies his pills and spouts out lies.

    "ERROR: Please Scan Again." He growls, he flails, he screams in pain. The trolley bucks in wounded pride, And traffic parts as they collide.

    “Oh sod this plastic priest of pills! May your circuits drown in codeine spills!” He wobbles hard, he curses fate, The townsfolk flee. He’s running late.

    But lo! What’s this? A shadow looms In sterile coat from Munich’s tombs. Dr. Fist, the Teutonic fiend, With charts and probes and eyes that gleam.

    “I vill examine your... undead gait, Your brain is soup. Let’s puncture fate!” He chases Dark through corridors, With syringes sharp and no remorse.

    Yet still he rides our trembling knight, On lithium wheels through darkest night. No cape, no crown, just spasm and spark, The one they call... Herr Mister 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

    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