Multiple sclerosis  is My Living Hell

ChronicIllness

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

    "The vagus nerve is supposed to keep you alive. Mine seems to have a death wish. Living with MS means living with this burning wire misfiring 24/7.You can't see it. But it's killing me, slowly."

    Let me introduce you to the nerve that’s been puppeteering my misery for 40 years:

    🧠 The vagus nerve.

    Longest cranial nerve in the body. Part of the autonomic nervous system. Runs from the brainstem all the way down into your guts, like a bastard serpent lodged in flesh.

    It’s meant to regulate “involuntary” things. Heart rate. Breathing. Digestion. Mood. Inflammation.

    Mine regulates suffering.

    With MS in the mix, my vagus nerve is like a drunk electrician with a machete and a grudge.

    — My heart rate drops so low I black out. — Then shoots so high I think I’m dying. — My diaphragm spasms and I stop breathing mid-sentence. — My throat closes. — My stomach decides to reverse course — vomiting, choking, retching. — Food sits there, like a funeral buffet no one touches.

    And the gaslighting begins. “Anxiety.” “Stress.” “Try mindfulness.”

    Fuck off. I’m not hyperventilating. I’m being strangled from the inside by a goddamn nerve that's been glitching out since I was a teenager.

    I’ve lived four decades like this. Forty years of waking up choking. Forty years of feeling my own body betray me. Forty years of doctors shrugging, guessing, dismissing, or overdosing me on meds for symptoms they don’t understand.

    It’s not just discomfort. It’s unrelenting bodily horror.

    Imagine being electrocuted through your spine while trying to eat a sandwich. Imagine trying to breathe but your diaphragm spasms like a car crash in your ribs. Imagine shitting yourself with a heart rate of 40 and then vomiting while you go unconscious.

    You ever had diaphragmatic myoclonus? That charming thing where your gut convulses so violently you can’t breathe or speak? That’s the vagus nerve on a rampage.

    People talk about Vagus Nerve Stimulation like it’s hope in a box. Sure. Stick electrodes in my neck. I’ll try anything once — hell, at this point, if you told me licking a toad would help, I’d be Frenching Kermit by tea time.

    I’ve been laughed at. Medicated into a coma. Ignored.

    This isn’t just MS. This is autonomic hell.

    So yeah — fuck the diagrams and polite educational pamphlets.

    My vagus nerve isn’t a calming force. It’s a loaded gun wired to my internal organs.

    And some days, I honestly think it’s trying to finish the job.

    And yet — here I am. Still alive. Still typing. Still wheezing and swallowing around the broken circuitry that is my body.

    You want honesty? This is it.

    Welcome to my living hell.

        “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

    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

    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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

    🩸 “Darkness teaches me what light never could.”

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

           “The views in this post are based on my personal  
            experience. I do not intend harm, only honesty.”   
    
             “By ink and breath and sacred rage, I write.
                      By storm and silence, I survive.”
    

    enter image description here

                          🧌✨ @goblinbloggeruk ✨🧌
    
  • Posted on

    It’s been the weirdest of weeks. Not much sleep. But I’m still here.

    My MS symptoms are calming down to a level I can handle. That’s a victory, right there. Because every breath I take is another I refused to surrender.

    I drown out the tinnitus with music. My head sounds like a goblin with a weed wacker, or a spluttering two-stroke engine – like an old Yamaha FS1E, coughing and whining its fizzy rebellion. Call her Fizzy Girl, Wifey, Albertine… call her whatever you want. The pain stays the same.

    Looking at this screen burns. My voice is croaky. Words come slow. My tongue is numb again, lost in a mouthful of phantom bites and blister burns. That’s life when MS hits your throat, your vagus nerve, your corpus callosum. But I fight it. Every. Damn. Day.

    I’ve had those dark thoughts. I’d be lying if I said I hadn’t. But I never let them win. I write them out. I bleed them onto pages, text pads, digital scraps – foggy memories turned into clarity, darkness turned into light.

    I created this alter ego – The Goblin. It’s addictive, this freedom of expression. I have no mates, no friends in the traditional sense. But I have myself. And I have my family. And that is enough.

    It’s Saturday afternoon. June 6th. Back in the day, Saturday afternoons meant wrestling on BBC2. Mark Rocco. Marty Jones. Fit Finlay. Skull Murphy. Giant Haystacks. Banger Walsh. I met Haystacks once. I was 6ft 4 back then, and he made me feel small. That’s what true presence is.

    I remember mushrooms my dad picked fresh from the field, sizzling in Trex, pitch black underneath – perfect. Simple memories. Real moments. The things that matter.

    So what’s broken this week, you ask? Nothing. My biggest win was reinstalling Windows 11 and getting Kali Linux running again. The rest is just background noise.

    I picked up my crown from the dentist. He had a bike accident. I’m sending him healing energy, like I send to you reading this now.

    Because yes, I know darkness. I live with pain. But I rise. Every. Single. Time.

    Never give up. I haven’t. And I won’t. Neither should you.

             “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

    🖤 “ coming Soon: A brutally honest ranking of the top ten alternative medicines.

    What’s worth it, what’s useless, and what might just make life with chronic illness slightly less unbearable.”(Straight but brand-consistent) “Soon: A brutally honest ranking of the top ten alternative medicines. What’s worth it, what’s useless, and what might just make life with chronic illness slightly less unbearable.”(Straight but brand-consistent) “Soon: A brutally honest ranking of the top ten alternative medicines. What’s worth it, what’s useless, and what might just make life with chronic illness slightly less unbearable.”

    So, you’ve got MS. Congrats on your new life sentence. Welcome to the club nobody wants to join, where your immune system treats your nerves like a chew toy and daily tasks become extreme sports. If you’re wondering how to cope with the relentless mental and physical torture that is Multiple Sclerosis, here’s your brutally honest, darkly comedic guide.

    1. Eat Like You Actually Care (Even Though You Don’t) Sure, nutrition might help reduce fatigue, inflammation, and general bodily betrayal. Will quinoa and kale cure your MS? Absolutely not. But it’ll help you feel morally superior while your nervous system crumbles.

    2. Exercise Without Dying Yes, exercise is important. But if you’re one squat away from sh*tting yourself or collapsing like a Victorian woman denied her fainting couch, maybe start with gentle stretching or a walk to the fridge. Small wins.

    3. Train Your Brain (Before It Leaves You) MS can fog your mind faster than three bottles of wine. Crosswords, sudoku, brain training apps – all designed to slow the brain-melt. Bonus: if you forget to do them, that’s probably why you need them in the first place.

    4. Sleep: Because Insomnia Isn’t Edgy MS fatigue is like dragging a corpse around all day. Insomnia makes it worse. Try regular sleep times, a dark cave-like room, and cooling your room so your inner demon feels at home.

    5. Stress – Your Favourite Symptom Trigger Stress is the invisible gremlin that pokes your MS into full meltdown. Meditate, do yoga, or scream silently into your pillow. Whatever keeps you from becoming an actual murderer today.

    6. Vitamin D & Smoking Low vitamin D makes MS worse. Smoking makes MS worse. The universe is basically telling you to quit cigs and take a supplement. Or keep smoking and accept your fate – dark choices only you can make.

    7. Heat: Your Mortal Enemy Heat turns your already dysfunctional nerves into cooked spaghetti. Stay cool. Cold drinks, fans, icy glares at strangers – all recommended.

    8. Depression & Anxiety: The Cherry on Top MS is a daily trauma loop, so depression and anxiety are loyal companions. Therapy, meds, and dark humour memes help. Talking to people might too, if you can be arsed.

    9. Alternative Therapies Massage, acupuncture, cannabis oil – none will resurrect your dead nerves, but they might make the pain less unrelenting. Go wild. Or don’t. It’s your hell.

    Final Pep Talk MS won’t kill your dark sense of humour, unless you let it. Implement these daily management tips and maybe – just maybe – tomorrow will suck slightly less.

           “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

    🖤 Brutally honest. Darkly hilarious. Another night, another spectacular symphony of spasms and piss. Didn’t even eat jam—so no excuses. Still ended up piddling all night. Up at 4 a.m., and that’s it. Done. Might as well accept it: I live on four hours of sleep and pure defiance now.

    My bladder? It’s got its own postcode and personality. I can’t even wheel past a bloody tap without it throwing a tantrum. The sound of water? Instant dribble. It's never a full empty either—just a cheeky squirt, like it’s laughing at me from the inside.

    Forget catheters. I invented my own fix. Because willy pipe of doom? Not a chance. I like my manhood unperforated, thank you very much.

    And then there’s the daemon bum. Thanks to numb fingers, wiping is like blindfolded surgery with oven mitts. Too soft? Still dirty. Too hard? Hello blood. Throw in a bout of dehydration, and now we’re in full bowel battleground mode. Constipation? Got a hack for that—but it’s borderline medieval.

    Oh, food. Where do we start? I’m allergic to everything. Meat, fish, animal fat, most veg. Yes, vegetables. I can’t even eat like a rabbit. Instead, I lurk near the kitchen extractor fan while bacon fries, sniffing fat molecules like some kind of culinary pervert. Minutes later—BOOM. To the loo. Escape velocity.

    Let’s add the pain, shall we? Neck, back, gut, everywhere. MS is giving me a right walloping. Pins and needles across arms, legs, face. Tinnitus screeching in my skull like a broken fire alarm. And today? Extra loud. Extra lovely.

    Stress level: 9.7 on the “Why am I not screaming?” scale.

    Time to hit the THC-CBD oil and vape some Mary Jane to calm the chaos. Not because it’s edgy—because it works. Better than half the legal shit they try to hand out like sweets.

    Outside? Dark clouds. Inside? Just me, my squeaky-wheeled trolley (cheers, WD-40, made it worse), and a nervous bladder ready to pounce.

    Still here. Still wheeling. Still laughing at the madness. What else can you do?

              “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

  • Posted on

    It’s funny, isn’t it? You’re in a room with one other person. Just the two of you. You speak. Your mouth moves. Actual words come out. But somehow… nothing lands. It's like you're a ghost, a passing breeze, or worse — background noise to someone else's ego monologue.

    Welcome to my reality: Selective bloody hearing.

    Let me paint the scene. You're fighting off a brutal illness, spasms hit like a freight train, your brain fogs up like a broken kettle left out in the English drizzle, and then comes the cherry on top — people don’t listen. Not can’t. Won’t. They avert their eyes, mumble condescending clichés, or — the fan favourite — promise they’ll “call you soon.” (Spoiler: they won’t.)

    Is it the wheelchair? The drooping face? The occasional dribble? Or do they just prefer their disabled friends silent, motionless, and conveniently non-existent?

    Maybe They’re Just Uncomfortable? Oh yes. Heaven forbid they feel awkward while you’re being eaten alive by something terminal and nightmarish.

    I started calling them out. Can you imagine the chaos? Apparently, honesty from the terminally ill is too real. It makes dinner parties awkward. And honestly, I’m well past the point of caring. If I’m going to be ignored, I might as well scream in Black Sabbath and let Ozzy do the talking.

    Paranoid? Nah. At first, I thought maybe it was just me. A bad day. A misread signal. But no. There’s a pattern. The looks. The empty promises. The slow fade-outs. The way friends evaporate like cheap aftershave. You become a "thing," a problem they can't fix and don't want to look at. I didn’t ask to be a medical freakshow — but here I am, feeling like the last carnie in a ghost-town circus.

    It's Raining, I'm Buzzing Brain fog is a beast. Been digging into DNA research (who was I before this monster arrived?), but my head’s a bag of wet socks lately. Tingling lips. Numb tongue. Probably allergic to the air again. And that damn straw — it always goes missing, like some household Bermuda Triangle.

    Wrestling Is My Religion Say what you want — yes, it’s “fake” — but pro wrestling is realer than most people I know. There’s truth in the ring. Pain. Theatre. Keyfabe. Art. The ghosts of the squared circle still dance under the spotlights in my head. And let’s be honest, “Real life is fake. Wrestling is real.” That’s my gospel. That’s truth.

    📢 Follow me on X/Twitter: 💀 “If you like your humour dark and your truth darker, come hang out with a chronically ill goblin on a ranting mission of mayhem. Pro wrestling, spirituality, weirdness,disability, sarcasm, and survival served raw.”

    🧠 @GoblinBloggerUK 📍 Because somebody's got to say it...

                  “REALITY IS FAKE. WRESTLING IS REAL.”
                                — @GoblinBloggerUK
    

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

             “The views in this post are based on my personal  
                experience. I do not intend harm, only honesty.”  
    
              “By ink and breath and sacred rage, I write.
                       By storm and silence, I survive.”
    

    enter image description here

  • Posted on

    Well, it seems the annual hayfever apocalypse is upon us. Hooray. Yes, I’m now on three antihistamines a day (or however one spells it—frankly, the packaging is too blurry through the eye-itch haze to tell). My eyes currently feel like they’ve been rubbed with Sahara sand and rage. They itch. They burn. They are deeply offended.

    As if that weren’t spiritually enlightening enough, apparently we’re also entering a solar storm spiral of doom. Some sort of sunspot nonsense for the next two days. Space people says "all hell could break loose." I say, bring it—what’s one more intergalactic inconvenience when your nervous system is already hosting a personal light show?

    Speaking of which—hello, tinnitus, old friend. Oh, and welcome back, numbness on the left side. My hand’s gone stupid again, as if it’s auditioning for a B-movie about haunted limbs. Meanwhile, I continue to dribble down aloe drinks like some sort of spiritual juicing monk, in the vague hope it helps something. Anything.

    Apparently Monday brings better weather. Brilliant! Time to roll out the Wheelchair of Death™ and hunt down some "fresh air" (or at least a breeze not laced with pollen and doom). Provided it’s not raining. Or boiling. Or both.

    Today was a weird one. I actually managed to get loads done on this blog. Going forward, I’ll be writing more about strange bits of my past, and of course, the winding, faltering path of my MS journey—as it meanders toward the inevitable: death. Or as I prefer to call it, a return to the Source, the Creator, the Great Mystery.

    As above, so below. As below, so above. The Emerald Tablet said it best. We are stardust, spirit, and sarcasm walking each other home. Through numb hands and dusty eyeballs. Still, I smile. Because blogging makes me weirdly happy. It helps give meaning to all that’s been lost.And so, along this road—I tread.

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

            “The views in this post are based on my personal  
              experience. I do not intend harm, only honesty.”  
    
                    “By ink and breath and sacred rage, I write.
                          By storm and silence, I survive.”
    

    enter image description here