Multiple sclerosis is My Living Hell

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All posts tagged british sarcasm 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.

    The sky’s doing a pressure wash and my lawn looks like a pub carpet at closing brown, patchy, and ashamed. Hope springs eternal that the grass will forgive me. Hope also springs that the Weed-Wacker Man (breaker of worlds, destroyer of garden ornaments) will arrive in his legendary glory. He hasn’t broken anything recently, which is either character growth or a quiet before the smash.

    We moved. We lost two decent mowers. The weed-wacker detonated itself across my shins like a budget claymore. The auction “bargain” mower was dead on arrival, staring at Albertine like it knew what it cost. Golden rule: test it at the auction we didn’t. Now we own a new second-hand mower and a new second-hand strimmer. Schrödinger’s tools: both working and about to die.

    Meanwhile, tinnitus has decided to headline both ears right channel lead vocal, left channel harmony with the catchy single “Sustained High-Pitch Misery (Remix)”. Rush can’t drown it out. Switching to Jim Cornette because if I can’t silence the ringing, I can at least add shouting that makes sense. Kayfabe forever; reality can jog on.

    My head’s cotton wool. Pressure left, pressure right, and a fluorescent whine drilling the centre. Headache rolling in like cheap weather. Agitation rising, spell-checker moaning in the corner. Next week promises the same thrilling itinerary: Nothing Happens, Then More Nothing. I’d scream into a field if the 3-wheeled Scooter of Death could survive the mud. It would not. It would explode, take a crow with it, and I’d be blamed in the parish notes.

    Am I in reality? Unfortunately, yes. And it’s damp.

    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

    ⚠️ 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.

    A love letter to time passing, things dying, and our stubborn insistence on dancing anyway.

    Samhain — 31 October (pronounced “Sow-in”) Celtic New Year. The veil does that “paper-thin” thing and everyone pretends they aren’t terrified. We remember the dead, talk nicely to them, and try not to bring home anything with teeth. Death isn’t a plot twist; it’s the punchline. Light a candle. Lock the cupboards. Be polite to the shadows.

    Yule — 21 December (archaic Geola; “YOO-luh”) Winter Solstice. The sun technically returns, which is adorable considering you won’t see it properly till March. The God is reborn, we eat too much, and convince ourselves evergreen branches can hold back seasonal despair. Ullr nods approvingly. New Year (again), because human calendars are soft suggestions at best.

    Imbolc — 2 February The land wakes up like a hungover dragon: cranky, gorgeous, and not to be rushed. Brighid is the Virgin of Light, which is ironic given how many candles we burn for her. Snowdrops appear; we collectively gasp; someone says “spring is coming” like it’s a spoiler.

    Spring Equinox — 21 March Day and night call a truce. The sun stretches; the earth blushes; allergies weaponise. Dedicate this to Eostre if you like: rabbits, eggs, fertility, the entire internet losing its mind. The young God goes hunting; so do we — for antihistamines and decent weather.

    Beltane — 30 April Everything is alive, loud, and suggestive. Sacred Marriage time: Goddess, God, maypoles, ribbons, symbolic entanglements that aren’t even trying to be subtle. If you’re not dancing, you’re at least grinning with suspiciously rosy cheeks. Bless the fires. Try not to set your hedge on actual fire.

    Midsummer (Litha) — 21 June Peak light. Peak hubris. The Sun wears a crown and we all act like it’ll last forever. It won’t — that’s the joke. Celebrate plenty, fill your pockets with protection herbs, and pretend the turning hasn’t already begun. The shadows are patient. So is entropy.

    Lughnasadh (Lammas) — 1 August (pronounced “LOO-nuh-suh”) First harvest. Time to reap what you sowed (or didn’t — awkward). Bread is broken, corn is cut, and we thank the land like it isn’t side-eyeing our life choices. Offer gratitude. Offer cake. Offer to stop procrastinating (you won’t).

    Autumn Equinox — 21 September Second truce. Day and night shake hands like rivals who know what’s coming. We honour age, endings, and that creeping chill that isn’t just the weather. Put away the summer bravado; fetch the blankets; pretend you like gourds.

    …and back to Samhain — 31 October The wheel clicks home. We face the Gods in their difficult aspects, the ones that don’t do customer service. Not fear — perspective. Life and death are a matched set. Say the names. Pour the drink. Keep the door half-open.

    How to Actually Use This (Without Becoming a Walking Pinterest Board) Mark the days. A candle is enough. So is a good meal.

    Keep a tiny notebook: what’s growing, what’s dying, what you’re pretending not to feel.

    Make one offering each sabbat: time, food, or honesty. The last one stings; it works.

    Don’t overcomplicate it. The earth is turning with or without your table runner.

    Eight seasonal checkpoints. Celebrate what lives, mourn what doesn’t, and remain cheeky about the abyss. That’s the praxis.

    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

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

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

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

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

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

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

    Let’s break it down:

    Numb arsehole? Check.

    Dead rectal nerves? Of course.

    Surprise poo party mid Tesco visit? You bet.

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

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

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

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

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

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

    enter image description here

                            @goblinbloggeruk  -  sick@mylivinghell.co.uk
    
  • Posted on

    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 ✨🧌