Multiple sclerosis is My Living Hell

disability life

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

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    it’s Wednesday no its Thursday dam. We’re off to the dentist with Albertine. A thrilling day out, I know. The trip’s about three-quarters of an hour, which is more than enough time for chaos to ferment nicely.

    Yopi my four-legged partner in crime is already vibrating with excitement. She doesn’t care that the van looks like it’s one pothole away from being declared a historical ruin. She clambered into the back like she owned the place, strapped in with her little doggy seatbelt, ready for action. And yes, she’s got her tripe treats. Because if you’re going to travel in style, you’d better smell like death warmed up.

    We’re cruising along at a decent pace, avoiding the craters the council call “roads.” Not too many today someone’s actually patched them. Miracles do happen. Just as I’m thinking this journey might be civilised, Yopi lets one rip.

    It’s not a polite little toot. No. This is a full-scale biological attack. Windows down. Albertine’s gone a shade somewhere between pistachio and hospital corridor. I’ve got my head halfway out the window, tinnitus roaring like a broken radio I can’t switch off. No mute button for my skull.

    And then… she farts again. Absolute carnage. I now officially smell like a rolling dog treat. Honestly though it’s hilarious. And weirdly, sitting there choking on Eau de Bulldog while my head screams, I felt… calm. Maybe “calm” is too strong. “Temporarily distracted from my own internal apocalypse” is more accurate.

    Sleep’s been scarce. The pain’s still here that burning, tingling bastard that starts low and just ramps up like it’s auditioning for a horror soundtrack. My keyboard’s finally given up on me too. “E”, “A”, “S”, “D” gone. Worn out by my furious bashing. A casualty of war.

    Meanwhile, my throat’s decided to re-enact a slow strangulation act. MS never runs out of party tricks.

    Then it hits me. Seventy isn’t that far off. And the thought makes my stomach sink. I’ve got no friends left. They’re either dead, disappeared, or just couldn’t hack the fact that my head and body have changed. Wheelchair. Pain. Brain fog. That’s the reality. Illness strips you naked in ways no one warns you about. It makes people quietly step back. Like grief, but you’re still bloody here.

    I miss the old me. He was loud. Misunderstood. A bit of a legend, actually. And now he’s gone. MS didn’t just change my body it erased someone I used to know.

    And in those quiet moments, when the tinnitus is screaming, the van smells like Yopi’s digestive crimes, and the world feels indifferent… I think about death. Not in a poetic way. In a “one day I won’t wake up and that’ll be that” way.

    And I wonder what exactly am I supposed to be learning from this slow burn?

    MS, you absolute bastard.

    Some afternoons hit differently. The sun hangs low, the world trundles on, and I sit here smelling faintly of tripe treats realising that existence is equal parts absurdity and ache. And somehow, in the middle of all that, I’m still here.

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ enter image description here
    @goblinbloggeruk - sick@mylivinghell.co.uk

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    So, chronic illness. A joyride through hell in a wheelchair made of barbed wire. If you’re in the club, I don’t need to tell you it’s exhausting, absurd, and sometimes the only option left is to laugh before you cry yourself into a flare.

    Here are 10 “fun” facts about chronic illness that might make you laugh, groan, or throw something.

    1. The “Invisible” Magic Trick I’m fine. I look fine. Until I’m not. My body does the disappearing act of a Vegas magician, minus the applause. Cue the genius asking: “But you don’t look sick?” You’re right, Sherlock. Neither does Wi-Fi, and yet here we are.

    2. Chronic Illness Is Weirdly Popular Statistically, over half of adults have at least one chronic condition. That’s right, 50% of people are secretly walking (or limping) into the club. Pity the membership perks are rubbish.

    3. Genetics: The Family Heirloom No One Wanted Some families pass down houses, jewellery, or good bone structure. Mine passes down arthritis and dodgy immune systems. Cheers, ancestors.

    4. The Bonus Round: Mental Health It’s not just your body. Chronic illness takes your mind out back and kicks it around too. Depression, anxiety, stress it’s like getting the “deluxe” package nobody ordered.

    5. Cure? Ha. Science is trying, bless them. But for now, it’s all “management.” Basically, we live in the land of trial-and-error self-care. Sometimes exercise and kale help. Sometimes they just remind you that life is a cruel joke.

    6. Lifestyle as a Job Description Managing your health is like being a houseplant with trust issues. Food, light, water, stress control. Do it right and you might thrive. Do it wrong and you wilt in public.

    7. Predictability? Never Heard of Her. You plan a nice day? A flare hears you and says, “Not on my watch.” Your body is basically a toxic relationship: charming when good, brutal when bad.

    8. Personal Growth, Whether You Like It or Not You get tough, resourceful, and annoyingly self-aware. Like a Jedi, but with a stick instead of a lightsaber. Independence? Optional. Asking for help? Necessary.

    9. Tech Symbiosis Welcome to cyborg life. Fitbits, apps, pill alarms machines have become my sidekicks. My body rebels; my tech tattles. Together, we’re barely functional.

    10. You’re Not Alone It feels isolating, but the internet is crawling with people who get it. Forums, Facebook, Reddit, Insta tribes they exist, and they’ll make you feel less like a freak in the void.

    Closing Thoughts Chronic illness isn’t fun. It’s savage. It rips your plans apart, laughs in your face, and occasionally ruins your life for sport. But it also forces you to find humour in places most people would rather look away from. That’s resilience. That’s survival. And if nothing else you’re not alone in the madness.

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    Pets and Mental Health

    Let’s be honest: when you’ve got MS, or any chronic delight that chews through your brain and body like a rat in a cereal box, you need a bit of backup. Enter pets. They’re either the reason you cling to sanity… or the reason you’re face-planting on the carpet because your bulldog “accidentally” herded you into the coffee table.

    Companionship and Emotional Support

    Unconditional Love: Which really means they love you because you smell like food and have opposable thumbs. Still, it beats human relationships half the time.

    Routine and Responsibility: Feeding them, walking them, remembering to let them out before they piss on the carpet — structure, baby. Sometimes that’s the only structure MS lets you have.

    Stress Reduction

    Physical Touch: Stroking a cat reduces stress. Stroking a dog reduces stress. Stroking a hedgehog raises questions.

    Distraction from Worries: Watching your cat fail to jump on the sofa is cheaper than therapy and about as effective.

    Recognizing Emotional Changes

    Behavioral Cues: Dogs sense when you’re sad. Cats sense it too, but only so they can sit directly on your bladder until you cry harder.

    Encouraging Activity: Dogs make you move. Cats make you a static heating pad. Either way, your muscles get a workout — voluntary or not.

    Mood Enhancement

    Joy and Laughter: A dog chasing its tail. A cat chasing nothing. Both are funny until you remember they probably think the same thing watching you.

    Social Interaction: Walking a dog = conversations with strangers. Owning a cat = conversations with yourself. Both keep you just sane enough not to hit anyone.

    Pets will either:

    Save your mental health.

    Destroy your house.

    Remind you that death comes for all of us (but first for the goldfish).

    Still, between the fur, farts, and emotional chaos, they’re usually worth it. Unless you’re allergic. Then it’s just asthma and regret.

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    The things you joke about that make outsiders squirm, but insiders nod, laugh, and maybe choke on their tea.

    Let’s face it: survival isn’t just about dragging your diseased carcass through another day. It’s about keeping your mind sharp enough to still stab at the absurdity of it all with a rusty spoon. Outsiders look at me and think, “That’s a bit much.” Insiders the ones who actually live with the daily grind of illness, disability, or the general circus of existence just snort, because we know the truth: dark humour is the only anaesthetic that doesn’t wear off.

    We joke about wheelchairs doing handbrake turns, and about our bodies being more unreliable than a 40-year-old washing machine that screams like a banshee and still doesn’t spin. about death knocking on the door and us telling it to sod off because the takeaway hasn’t arrived yet. And yes, it makes people uncomfortable. Good. That’s the point. If your laughter doesn’t come with a side of guilt, is it really worth laughing at?

    Dark humour isn’t cruel. It’s currency. It buys us moments of control when life’s stripped us bare. And for those who say, “You shouldn’t joke about that” congratulations, you’ve just outed yourself as a tourist. The rest of us are residents. Permanent. Non-refundable. And we’ll keep laughing in the waiting room of the apocalypse, thanks very much.

    Relevant Afternoon AI Thought If AI ever truly “understood” dark humour, it wouldn’t be because it learned to laugh — it would be because it learned to suffer. Until then, it’ll just be politely chuckling at our funeral jokes while secretly wondering if it should file a bug report.

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly—not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone—please reach out for help.

    Stress. Not the “ooh, I’m running late for the bus” kind. Not the “Mildred at Tesco gave me a funny look” kind. No. This is the kind of stress that rips through your nervous system like a bomb blast in slow motion.

    Years ago, one Friday evening, my GP calls me out of the blue. “You’ve had an abnormal ECG.” No warm-up, no context, just straight into DEFCON 1. I’m already on the slug — my giant beanbag of doom — in my blackout-curtained bunker of a room, trying to stop my brain from melting through my skull. No sensory crap. No light. Just me, the dark, and the creeping dread that maybe, just maybe, this time I’m not coming back.

    And yeah, I’ve wondered if I’ve completely lost my marbles. More than once. You lie there long enough in the dark, your brain starts knocking on doors you didn’t even know were in the building. Worlds of the unreal. Shadows of the unseen. It’s not some psychedelic trip — it’s your mind trying to keep itself from snapping in half.

    I don’t take suppressants. No “miracle” drugs. I walk — well, roll — this progressive MS path raw. Natural. My way. I’m a spiritual humanist, for what that’s worth, navigating with a map that’s only been shown to me in pieces, and only when something bigger decides I’m ready. The One. Pure love. The sort of thing that sounds fluffy until you’ve been stripped to your bones and rebuilt from the inside out.

    And yet today I’m full of happiness. Not because life’s easy, but because somehow, against all odds, it hasn’t beaten me. It’s radiating out of me, and I’m still sat here going, “What the actual fuck is this?”

    But stress oh, stress is the real assassin here. Live on air with Viper, mid-show, I had a heart attack. I kept talking. They had to physically take my mic away and shove me out the door. Why? Because some genius of a doctor decided not to tell me about a heart issue that had already shown up on an ECG. That little omission sent me spiralling, and boom another heart attack.

    After that? Two more at home. No ambulance. No doctor. Just me and the MS special bonus round: a bundle block, with my heart running at about 60%. And the NHS take? “Nothing to see here. Move along.”

    Mental health? Don’t make me laugh. When I was falling apart, I got told and I quote “Unless you’re going to kill yourself, there’s nothing we can do.” So I stopped asking for help. Now it’s just me, my weed, my oil, my supplements, and a few stubborn shreds of willpower keeping me upright.

    I look in the mirror and see a man who was once 6’4”, strong, loud, unbreakable. Now? I’m shrinking. Grey. Hair falling out. Cognitively scrambled. Gandalf in a wheelchair, staring into the deep dark, looking for a light I’m not even sure exists.

    But there’s still that glint. That spark. That “you will not fucking win” in my eyes.

    Toe to toe, inch by inch — I will fight this bastard to the last breath.

    You don’t beat me. I decide when I’m done.

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.

    enter image description here

  • Posted on

    There I am — parked up in my daughter’s front room, in my wheelchair , trapped in this deranged body of mine, joints on strike, nerves belting out their usual death metal anthem, and the telly crackles to life with Outback Opal Hunters.

    And suddenly… I’m free.

    I’m out there in the dust-blasted Australian outback, surrounded by sweating maniacs digging up rocks like they’re mining the shattered dreams of the gods. And I bloody love it.

    These lunatics aren’t digging for gold or fame. No, they’re chasing after fire trapped in stone opal. Shards of lightning frozen in rock. And what do they do to get it? Risk everything. Lose fingers. Melt in 45-degree heat. Spend 12 hours underground in a hole that’s one bad breath away from collapse just to find a flicker of green in a sea of grey. That’s not a job, mate. That’s madness with a purpose.

    And that’s why I can’t get enough of it.

    These people are broke, busted, broken, and burning up and they keep going. Why? Because maybe… just maybe… the next shovel-full might be their salvation. Or maybe it’s another week of living off tinned beans and borrowed hope. Sound familiar?

    Yeah, I see a bit of myself in every single one of those dirty, half-mad opal chasers. Because when you’re battling a body that’s turned against you like mine has every step, every day, every moment is digging through pain for that one shimmering slice of meaning.

    Watching Outback Opal Hunters isn’t just entertainment. It’s therapy. It’s watching people fight a silent war, and every now and then, win. It’s real, raw, dusty-as-hell life. And when those boys and girls hit pay dirt? When they hold up a stone that looks like it was carved from a rainbow by the devil himself? I feel it. Right down to the bone marrow.

    👑 Rod Manning – The Man Then there’s Rod Manning. He’s not just another miner. He’s the man. A grizzled Aussie bloke whose face is as weathered as the outback itself. The quiet storm of the Bushmen crew. No flair, no ego – just relentless grit and that rare magic touch. When he finds good stones, it’s like watching a magician pull colour from dust. And when things go tits-up (which they always do)? He dusts off, spits in the dirt, and mutters:

    “She’ll be right.”

    And by all buggering chances, it bloody well is. He is awesome. He is the man.

    If my MS was an opal mine, it’d be full of collapses, bad air, and a constant sense of “Why the hell am I even doing this?” But sometimes just sometimes you hit that flicker of colour that makes it all worth it.

    So here’s to the mad bastards with pickaxes and faith. Outback Opal Hunters — you’re not just digging for rocks. You’re digging through my soul, and somehow, making me feel alive again.

    Now pass me the remote and a cold one, I’ve got opal fever.

               “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