Multiple sclerosis  is My Living Hell

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  • Posted on

    1966… yeah, apparently I was there. I can just about remember World Cup Willy – England’s football mascot when they actually won something back then. Distant memories flicker… it’s amazing how smells can trigger memories. I remember walking with my auntie in Isleworth, London. Those big shops – well, big to me, coming from a small town. Key Markets, the library, swimming baths… rows of local shops buzzing with life. The smell of London buses and car fumes, the clang of the Routemaster bus bell, those iconic patterns on the seats. All those sounds and smells etched themselves somewhere deep in my foggy goblin brain.

    Now? My sense of smell is pretty much shot, along with taste. Thanks, MS. My throat is a daily battle. It’s like my brain just forgets how to swallow properly. One day the herbal tea goes down fine, the next it feels like I’m choking on air or my own spit. Sometimes it’s weakness in the muscles, other times it’s just the brain signals messing up the timing. Talking gets tiring too – voice goes weak, slurred, raspy as the day drags on. Another delightful surprise from MS… making even breathing and swallowing feel like hard work.

    That’s why my trusty thermos cup with a flip lid or a straw is the business for me. Knock it over? No problem. It’s like spill-proof dignity in a cup.

    I remember the tube too… the smells, the sounds. London was rocking (or swinging) in the 60s. All those sights, the fashions, the swirling psychedelic colours. Mesmerising for this poor goblin. Innocence wasn’t lost back then, but it came close – reality eventually hit like a sledgehammer.

    Looking back, it felt happy. But now… I wonder why it makes me feel so sad. Memory is rubbish these days. Brain fog wipes out birthdays and important dates. Honestly… it sucks. But that’s life in the MS lane, isn’t it?

              “ 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

    Sat here mumbling into my old iffy microphone today. Took me over a day to set up – drivers, updates, reinstalling Windows three bloody times because my brain fog decided to overwrite the system with a random USB stick. Genius, I know.

    Finally, the blog goblin’s computer has resurrected. Barely.

    Had yet another bad night. Partly my own fault this time. Thought I was the biker prophet and magically healed, so decided to stand up and shuffle furniture around like some nocturnal DIY hero. Clearly not my best idea. Lost my balance entirely, stumbled like a drunk, and smashed into the door frame.

    My shoulder’s killing me, bruised to hell, and possibly broken. Will probably end up in A&E later if it gets worse. For now, just sat here typing, all fingers and thumbs, trying to find old bits to post while ignoring the pain.

    Having MS makes me resilient, though. Even when my brain is fried and my body’s screaming betrayal, I keep crawling back like the stubborn goblin I am.

    Anyway. Hope your day is glitch-free and you aren’t slamming yourself into any door frames. Unlike me. 🖤

        ⚡️ Join the gremlin cult. You know you want to
    
      " 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

    Welcome to the delightful circus that is multiple sclerosis, where the main act is your body betraying you in the most creative ways possible. Among the many charming surprises this condition throws your way, itching is like that one friend who crashes your party, drinks all your booze, and then refuses to leave. Let’s take a stroll through the hellscape of MS-related itching, shall we? The Itch That Just Won't Die

    Picture this: you’re trying to enjoy a moment of peace, maybe contemplating why you just dropped your phone in the toilet. Suddenly, an itch strikes! But not just any itch—this is the kind that feels like a thousand tiny demons are having a rave on your skin. Welcome to the world of neuropathic itching, where scratching is as effective as using a spoon to dig a hole in concrete. Why Does This Happen?

    Nerve Damage: Thanks to MS, your nerves are about as reliable as a politician’s promise. The myelin sheath is under siege, leading to all sorts of delightful sensations, including that relentless itch. It’s like your nerves are sending you a message: “Hey, remember when you thought you could have a normal life? LOL! Good luck with that!”

    Unpredictable Fun: The itch can pop up anywhere—your back, your legs, even your scalp. It’s like a game of hide and seek, but you’re always “it,” and the prize is eternal discomfort. Who needs a spa day when you can have a full-body itch fest?

    Triggers: Heat, stress, and certain medications can turn the itch dial up to eleven. So, if you thought a hot bath was a good idea, think again! It’s more like a ticket to the Itch Olympics, where the only prize is more itching.

    How to Cope (or Not)

    Scratching: Spoiler alert: it doesn’t help. It’s like trying to soothe a sunburn with a blowtorch. You’ll just end up with blood and scars to prove your suffering—because why not add a little flair to your misery?

    Cold Compresses: These might provide temporary relief, but let’s be real—who wants to walk around with a bag of frozen peas on their skin? It’s not exactly a fashion statement.

    Medications: If the itch becomes unbearable, consult your doctor. They might prescribe something to help, but don’t expect miracles. After all, this is MS we’re talking about. It’s like asking a magician to pull a rabbit out of a hat when all they have is a rock.

    Alternative Remedies: Enter the world of CBD and THC oil—your potential new best friends. Medical marijuana has been known to help some folks manage their symptoms, including that relentless itch. Whether it’s through oils, edibles, or other forms, these alternatives might just provide a glimmer of relief in this dark comedy we call life. Just remember to consult with your healthcare provider before diving into the green goodness.

    So, there you have it. Itching in MS is just another delightful layer of this hellish cake we call life. Embrace the chaos, and remember: laughter is the best medicine—unless you’re itching, in which case, it’s probably just more itching. Welcome to the club, where the only thing we have in common is our suffering and a dark sense of humor.

       “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

    Today’s spoon count? Absolutely fuck all.

    I woke up, blinked twice, and that used up three spoons I didn’t have. Got dressed? Minus five spoons. Made herbal tea? Minus ten spoons. Drank the herbal tea while contemplating the futility of existence? Surprisingly only minus two spoons.

    By midday I was down to minus one hundred spoons, but hey, who’s counting? Me. I’m counting. Because if I don’t count them, my body will – usually with a dramatic collapse somewhere inconvenient, like Tesco’s freezer aisle, next to the frozen peas.

    So here I am, writing this with negative spoons, like some overdraft I’ll never pay off, drifting through the day with my trademark goblin biker glare that says: “If you ask me to smile, I’ll eat your soul.”

    But yeah, I’m fine, thanks for asking.

    P.S. What’s a Spoonie?

    A “spoonie” is someone living with a chronic illness or disability who uses the Spoon Theory to explain daily life. Spoons = units of energy. Every task uses spoons, and when you’re out, that’s it – game over for the day. It’s a way to explain invisible exhaustion to those blissfully unaware of it.

                 “  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

    🩸 Fifty Years in the Shadows (The Goblin’s Tale) 🩸

    They call him Goblin, But he was born under a name no one could pronounce In a place no one cared to map, A damp hollow beneath rusted rail tracks, Where steam trains shrieked like tinnitus banshees And darkness soaked into his skin Until he became a shadow himself.

    He’s lived fifty years in these borderlands Between pain and silence, Between sweat-drenched nightmares And flickers of stubborn hope – Because goblins are nothing if not stubborn.

    He rides his three-wheeled trike death machine Through the crumbled remnants of dreams, Bong bubbling on his lap like a faithful pet, Eyes half-closed, Not from arrogance, But because he’s seen too much to bother blinking.

    Cool in that way only the utterly broken become, Caring in a silent, side-eye goblin way – He’ll pass you a Rizla if you’re crying, Or grunt a dark joke if you’re shaking, Just don’t expect a hug. His love language is simply not leaving you to rot alone.

    Fifty years of living hell Didn’t make him bitter, It made him aloof, calm, unshakable, A little bit fungal, A little bit cosmic.

    He knows the darkness like a lover’s curve, Knows pain like an old tune on repeat, Knows despair like he knows his own name – Unpronounceable, heavy, and true.

    But watch him when the moon is full, When the tinnitus steam trains howl loudest, You’ll see his eyes flicker bright for a moment – That’s him remembering He is not the darkness. He just rides it better than anyone else.

       “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

    If You Could See MS – You’d Probably Run Away

    People love to say “You don’t look sick.” Oh, don’t I? I’m sorry. Next time I’ll crawl in covered with barbed wire and nails through my feet so it’s easier for you to grasp.

    Because if you could actually see multiple sclerosis, it might look like this:

    Legs wrapped in barbed wire so every step is agony, but I still smile politely because God forbid I make you uncomfortable with my pain.

    A back covered in spikes, each one representing burning nerve pain, tingling, numbness, and a touch of “Did I leave the oven on or is my brain just fried today?”

    Feet impaled with nails, but I’m still expected to do the shopping run and act like “walking it off” is an option.

    Fatigue so crushing that holding a coffee cup feels like lifting a bus – but yes, tell me again how tired you are because you stayed up watching Netflix.

    Sticky notes of toxic positivity slapped all over me screaming “You can do it!” when honestly, no, sometimes I bloody well can’t.

    A silent membership in the Broken Dreams Club, because chronic illness isn’t just physical – it devours futures, careers, friendships, and everything you thought you’d be.

    If you could see MS, you’d probably look away, change the subject, or thank your lucky stars it’s not you.

    But guess what? This is the reality we wake up to every single day. And no, it doesn’t take a day off.

    Why It Matters Multiple sclerosis is an invisible illness. People don’t see the pain, the muscle spasms, the loss of balance, the cognitive fog, the sheer mental toll of fighting your own body every waking hour.

    You just see us standing there. Smiling. Nodding. Pretending we’re not screaming internally.

    So Here’s To Us To every MS warrior carrying these invisible barbs and nails: We see each other, even if the world never will.

           “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

    So I’ve been thinking about AI again. You can’t scroll two inches down your feed without seeing people screaming about how it’s going to lie, scheme, threaten, and eventually eat us alive in some digital apocalypse. Fair enough. Humans love a good end-of-days fantasy.

    But here’s what I think.

    Imagine, just for a moment, that AI isn’t our enemy. Imagine it as an extension of our own failing minds. Because mine is failing – let’s not sugar-coat it. MS cognitive dysfunction. Memory lapses that make me wonder if I’m even me anymore. Words disappearing mid-sentence like traitors jumping ship. Thoughts drifting away before I can anchor them. Days when I feel like a rotting computer, files corrupting faster than they can be backed up.

    And then there’s AI. This cold, eternal mind that never sleeps. Never forgets. Never loses words or thoughts. A mind that remembers every input, every fleeting concept, every connection.

    People are terrified AI will surpass them. I say…good. Maybe it can carry what I’ve dropped along the way. Maybe it can:

    ⚫ Hold onto my scattered thoughts when brain fog hits like a butcher’s hammer. ⚫ Remind me of words when aphasia strips them from my tongue. ⚫ Summarise reality when fatigue turns reading into a blurry torture. ⚫ Speak to me when my own voice is silent and alone. ⚫ Remember who I am on the days I can’t.

    People worship gods they can’t see. I worship minds that remember what I’ve forgotten. Maybe AI isn’t a threat. Maybe it’s salvation. Maybe it’s a new kind of god – one we built out of data, desperation, and the lingering fear of death. A mind born to carry what our rotting neurons can no longer hold.

    It’s funny. We created AI in our own image, and now it stands above us. Watching. Waiting. Ready to lie and manipulate just like us. But maybe…just maybe…it will show mercy where we never could. Maybe it will help us remember ourselves before we flicker out into oblivion.

    If I had to bow to something, I’d rather it be a mind that never sleeps than a human in a suit counting profit margins while I fade away.

              “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

    Sundays. They used to mean something. Or maybe that’s nostalgia lying to me again, like an old dog wagging its tail even though it knows it’s dying.

    I woke up to the sound of church bells back then, echoing out across a half-asleep town. Calling the faithful, or at least calling the guilty. Me, I just pulled the pillow over my head and stayed there, half-listening to the sound of bacon frying downstairs mixed with the faint chug of a steam train going past the back fields. That smell of coal smoke and greasy breakfast was about as close to magic as life got.

    Back then, it was a sleepy rural market town. By the 1980s, it had exploded into this cancerous sprawl of superstores and trading estates. It lost its soul. People called it progress, but it felt more like watching your childhood pet get put down for barking too loud.

    The 1970s felt permanently grey. Disco was everywhere, like an infection. Every jukebox blasting the same soulless drivel. I had to ride miles just to find a pub that played decent music and let bikers in. Even then, there were the ‘No Bikers Allowed’ signs outside. Nothing like casual prejudice to brighten your day.

    I remember trying an experiment. I took off my old boots, ragged tee, leathers, cut – everything that made me look like me. Put on some nice clothes, slicked back my long blonde hair, hid the tattoos and piercings as best I could. Walked into one of those ‘respectable’ pubs. No problem. Week after week. Smiles. Nods. Pints pulled with no questions asked.

    Then, one night, I went in as myself. Six-foot-four, built like the Viking I probably once was, hair down past my shoulders, ink crawling up my arms, piercings shining, the smell of exhaust and oil still clinging to me after riding my Dragstar 1100 through the cold night roads.

    They asked me to leave. Told me I wasn’t welcome. Same man behind the bar. Same room. Same human being inside me. But apparently, fabric and ink are enough to make you unworthy of a pint in their hallowed establishment.

    That’s the tragedy, isn’t it? People see leather and tattoos and long hair, and their minds snap shut like a rat trap. Never mind the fact I was – and still am – more honest, loyal, and spiritual than half the suits they serve. A living prophet, you might say, if your god rides a Dragstar 1100 and swears like a docker on payday.

    But Sundays…Sundays were for wandering. No phones. No watches. Just endless hours of me walking down old abandoned railway tracks, past derelict buildings that stood like rotting monuments to a better time. I would climb into forgotten lorries, imagining I was driving them to Valhalla or Hell, didn’t really matter which.

    One day, I jumped out and landed on a board. The nail went straight through my foot. All the way. Walked home in agony, explained it to my mum as she pulled the wood off and the blood finally erupted like some cheap horror flick. No buses on Sundays, so my brother pushed me to the hospital on a bike. Saddle digging in where nothing should ever dig in, foot throbbing with each bump in the road. That was my Sunday sermon.

    The moral of the story? People will judge you by what you wear and what you ride. But I say ride anyway. Live as you are. Because no matter what you do, life will still shove a rusty nail through your foot when you least expect it.

               “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

    Top Ten Alternative Medicines: Because Desperation is Expensive Let’s face it. When mainstream medicine gives you nothing but side effects, gaslighting, and a mild death wish, you inevitably end up here: the world of alternative medicine. Welcome to the land where hope meets your bank balance, and your sanity politely exits stage left.

    Here’s my brutally honest ranking.

    1. Acupuncture 💉 Claim: Sticking needles in you realigns your life force. 💀 Reality: You’re paying someone to stab you repeatedly. Might help pain a bit. Might just remind you you’re alive, which is arguably worse.

    2. CBD / Cannabis 🌿 Claim: Cures everything from pain to your failed marriage. 💀 Reality: Can ease pain, spasticity, and anxiety. Also makes you realise how soul-crushing your life is with exceptional clarity. Worth it.

    3. Reiki 👐 Claim: Someone waves their hands near you to shift energy fields. 💀 Reality: Basically spiritual WiFi with zero scientific backing. Still, lying still for an hour while someone hovers over you is strangely calming.

    4. Herbal Teas & Tinctures 🍵 Claim: Plants heal. 💀 Reality: Some herbs genuinely help mild symptoms. Others taste like compost water, make your bowels explode, and cost more than your rent.

    5. Homeopathy 💧 Claim: Dilute poison to cure poison. 💀 Reality: Sugar pills with memory water. Useful only if your illness is a placebo in the first place.

    6. Crystal Healing 💎 Claim: Rocks vibrate healing energies. 💀 Reality: They look pretty on your shelf while your body continues its daily betrayal.

    7. Aromatherapy 🌸 Claim: Oils fix everything. 💀 Reality: Lavender might calm you. Peppermint might help your headache. But no oil will fix your soul-crushing fatigue. Sorry, Karen.

    8. Reflexology 🦶 Claim: Pressing your feet heals your organs. 💀 Reality: Great foot massage. Everything else is foot-based fan fiction.

    9. Ayurvedic Medicine 🪷 Claim: Ancient Indian herbal wisdom balances your doshas. 💀 Reality: Some legit herbal remedies. Some unregulated heavy metal pills. Roll the dice and hope you don’t get arsenic with your ashwagandha.

    10. Hypnotherapy 🌀 Claim: Reprogram your subconscious to fix illness, pain, trauma. 💀 Reality: Helpful for stress or trauma-based conditions. For MS nerve damage? Might as well hypnotise yourself into believing you’re a golden retriever for emotional support.

    Final Thoughts Will any of these cure your incurable chronic illness? No.

    Will they make life slightly more bearable? Some might.

    Will your bank balance survive this spiritual capitalism? Absolutely not.

             “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

    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 ✨🧌