Multiple sclerosis is My Living Hell

British Humour

All posts tagged British Humour 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 Thursday. The sun is out, probably warmer than my place, which is basically an icebox. Today’s forecast? Existential dread with a chance of mild joy.

    This morning, the doctor rang me for my phone appointment. Absolute legend. Actually made me feel less like a human pincushion, which is impressive because I have severe white coat syndrome. Since moving here, local doctors are… shockingly decent. no Plumbstick, it’s almost unsettling.

    Then came the highlight of my day: the “machine of death” at the chemist. It always malfunctions like it has a personal vendetta against me. But today? Today I smiled through the existential horror.

    Yopi, my alpha Blueblood American Bulldog, was serene like she’d transcended this mortal coil. She hopped into the back of Rusty 1, strapped in like a responsible adult (she’s better at this than me), and off we went. The warmth of the day made me momentarily forget I’m a failing meat suit with MS. Dogs are magical that way. Stroke a dog’s chin and suddenly the chronic pain fades to background noise… until reality slaps you in the face again.

    Speaking of slaps: my head feels… weird. Not foggy, just like some cosmic veil is tugging me toward a place free of pain. Somewhere better. Warmer. Definitely less human. My spiritual side is currently a maze, confusing me, mocking me, asking, “Who even are you?” Just a random meat suit with MS, apparently.

    I put on The Eagles and let the memories flood in. Nostalgia is a cruel friend reminds you what you’ve lost while your limbs stage a protest.

    We drove to the chemist. Thrilling stuff. All normal, boring, mundanely tragic but Yopi enjoyed it. Sometimes I wish I were a dog. Carefree. Oblivious. Immortal in joy.

    Yes, that’s Thursday. Survived. Somehow.

    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
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  • 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 Fatigue Olympics — A Users’ Guide to Collapsing with Style

    You know that moment when your body files for bankruptcy mid-toast? Welcome to the Fatigue Olympics: events nobody asked for, medals nobody wants, commentary provided by a goblin with a migraine and a sense of humour darker than a southern sky in February.

    Opening Ceremony (lights off, obviously)

    No fireworks. Too bright. We light a tea candle, stare at it for four minutes, then cancel the parade because we’re exhausted from thinking about it.

    Events

    100m Dash to the Loo

    You stand. The world tilts. Knees write a resignation letter. Heroic sit-down pee. Gold medal for not crying on the bath mat.

    Toast Marathon

    Aim: butter toast. Outcome: butter floor, butter dog, butter despair. The toaster dings like a smug little tyrant. DNF (Did Not Finish), again.

    Sofa Free-Climb

    Mid-sentence coma. You wake three hours later with a crumb fossilised to your cheek. Was it an important conversation? Probably. Did you survive? Also probably.

    Shower Sprint

    You manage one armpit and a stern glance at the shampoo. Podium finish if you got your hair wet on purpose.

    Remote-Control Deadlift

    Attempt to change channel. Drop remote on face. Pretend it was “mindfulness.” Bronze medal for not swearing at inanimate objects (you swore).

    Stairs Biathlon

    Climb and breathe. That’s it. That’s the sport. Personal best if you don’t consider simply living at the top step forever.

    Grocery Gauntlet

    Entering the shop was hubris. Leaving is a quest. Bread is heavy now. Who made bread heavy?

    Scoring System

    Finished without crying: +10

    Finished while crying: +20 (tears count as electrolytes)

    Didn’t finish but made a meme about it: automatic silver

    Cancelled the day and survived: lifetime achievement award

    Why this isn’t “just being tired”

    Fatigue is a hostile takeover. It hijacks signal from brain to body and replaces it with static. You’re not lazy; your wiring is on fire. Some days clarity visits for a few hours; you shift your mindset, put on music, make art, write something grim and honest, and that tiny act becomes revolutionary. That’s the win: not pretending it’s fine—moving anyway, even if “moving” is tapping one sentence and then lying down like a Victorian ghost.

    Closing Ceremony

    We applaud in our heads to conserve energy. The anthem is played at half-speed. Everyone leaves early and naps like champions.

    Post Footer: Practical Notes (because survival is punk)

    Lower the bar until you can step over it. Then lower it again.

    One task = a win. Two = a parade.

    Music, art, writing: not hobbies—lifelines.

    If anyone calls you “brave,” invoice them.

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

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  • 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.

    Living with multiple sclerosis (MS) is a bit like being dropped into a labyrinth where the walls are invisible and the floor is made of Lego. Every day is a surprise party, but instead of cake, you get fatigue, brain fog, and a lottery of weird symptoms. Your body speaks a language all its own a sort of biological Morse code. Spoiler: it’s mostly complaints.

    1. The Body’s Whispers (AKA the Passive-Aggressive Texts from Hell)

    Your body doesn’t scream right away. Oh no. It whispers, “Maybe don’t do that,” in the kind of tone your nan uses when she means “If you do, you’ll regret it forever.” Ignore it, and you’ll get the full “MS meltdown” treatment. Learn to listen to these gentle hints before they become a four alarm disaster. Trust me, your body wants you to fail the ‘ignore me’ test.

    1. Embracing the Rollercoaster (Or, Why I’m Sometimes a Superhero and Sometimes a Sloth)

    MS is the ultimate ride. Some days you wake up and think, “Yeah, I could probably take over the world.” Other days you make sloths look like adrenaline junkies. Don’t fight it. Embrace the madness. There’s no refund for this ticket anyway. If you can laugh when your legs forget they exist, you’re already ahead.

    1. The Power of Positivity (But Not the Cheesy Kind)

    Let’s get real: “positive vibes only” is for people with motivational mugs, not MS. Real positivity is finding a smirk in the struggle. Did you get out of bed today? Bloody legend. Did you find a reason to laugh, even if it was at yourself? That’s winning. Celebrate the tiny victories because some days, they’re all you’ll get.

    1. Mindfulness: Your Secret Weapon (Or, The Only Time Silence Isn’t Suspicious)

    No, mindfulness won’t cure MS, but it might stop you from headbutting a wall. Check in with yourself. Is your body grumbling, squeaking, or plotting revenge? Maybe it’s time for a rest, a stretch, or just a massive bar of chocolate. Mindfulness: because you can’t afford to ignore the warning lights on this old banger of a body.

    1. Building Your Support Squad (Or, Assembling Your Band of Misfits)

    Find your people. The ones who get it, the ones who don’t offer herbal tea as a cure. Whether it’s other MS folk, stubborn friends, or just some poor soul who doesn’t run when you say “incontinence,” keep them close. Empathy makes the pain bearable and the jokes darker. Don’t let anyone tell you it’s weakness to ask for help—sometimes, it’s just good strategy.

    1. Finding Your Voice (Because Telepathy Still Isn’t Covered by the NHS)

    Speak up. For your needs, your rights, your weird symptoms. Don’t let the world turn you into a prop in your own life story. Your voice might tremble, but it matters. The more you say, the more others understand and maybe, just maybe, the world will get a clue.

    Bonus Track: The Legend of the Overworked Neuros

    Let’s give a round of applause (or maybe just a sarcastic slow clap) for the overworked neurologists. They’re busier than a one-legged man in an arse-kicking contest, running from clinic to clinic, dodging patients like ninjas in white coats. Actual patient appointments? That’s rich. You’re more likely to win the EuroMillions than see one before your wheelchair warranty expires.

    The NHS says “your neuro will see you now,” but what they mean is: “He’ll see you on the mural in the waiting room. Or as a hologram projected from his last known location.” Some say if you light enough scented candles and chant “re-referral” three times, a neuro will materialize… but only to tell you that your next appointment is scheduled for June 2036.

    The truth is, neuros are overworked too many people, not enough doctors, and a health system held together with sellotape and wishful thinking. But while the overworked neuro vanishes like a magician at a kids’ party, you’re left to decode your own body’s malfunctioning Morse code and hope you don’t accidentally google yourself into a full blown panic attack.

    If you do spot a neuro in the wild, be gentle. They scare easily and may bolt for the exit if approached. In the meantime, keep calm, decode your own symptoms, and remember Dr. Google and Nurse Sarcasm are open 24/7.

    Bonus Track 2: The Thankless Saints MS Nurses

    While the neurologists are off playing hide and seek, let’s talk about the true legends: MS nurses. They’re the ones on the ground, fighting fires with a teaspoon and answering emails like their keyboard’s on fire. Somehow, they manage to be calm, knowledgeable, and kind even when you’re one question away from a meltdown and have already left nine voicemails.

    MS nurses are the unsung therapists, detectives, and sometimes part-time magicians (“You’ve tried turning it off and on again? Excellent now have you tried snacks and a nap?”). They field the panicked questions neuros don’t have time for, translate medical jargon into English, and manage to keep us (and sometimes themselves) just the right side of losing it.

    Are they overworked, underpaid, and under-appreciated? Of course! Do they do it anyway, with a level of patience and gallows humour that should earn them a sainthood (or at least hazard pay)? Absolutely.

    If you’re lucky enough to have an MS nurse who answers the phone and doesn’t flinch when you ask if your “weird new symptom” means you’re dying buy them a coffee. Or a spa weekend. Or just send a thank you meme. Without them, the whole bloody NHS MS system would collapse faster than my legs after a walk to the fridge.

    So here’s to the MS nurses: holding it all together with skill, sweat, and the sort of thankless determination that deserves a medal (or at least a pint).

    Bonus Track 3: The Unsung Heroes Support Groups, Volunteers & Charities

    If you think the NHS is barely clinging on, imagine life without the MS support groups, charities, and stubborn volunteers who do it all for the love of the cause (and maybe the free biscuits at meetings).

    Support groups: These legends run by people who actually get it are the real backbone of the MS world. They’re the ones who answer your late night freak outs, decode the NHS bureaucracy, and know which GP receptionist has the good biscuits. In-person, online, or just a WhatsApp meme away, they turn “I’m losing my mind” into “You’re not alone, mate.”

    Volunteers: The ones who give their time for free, organizing meet-ups, fundraising, sending out info packs, and listening to rants from people like us without ever losing their patience. Half the time, they’re managing their own MS or supporting someone who is but you’d never know, because they’re too busy holding everyone else up.

    Charities: Whether it’s the MS Society, MS Trust, Shift.ms, Overcoming MS, MS-UK, or any of the local grassroots warriors, they’re out there lobbying, funding research, and somehow keeping hope alive in a world that sometimes feels like it’s sponsored by despair. Without them, you’d still be Googling “what the hell is MS” while the NHS phone queue loops you back to start.

    Are they underfunded, overstretched, and powered mostly by stubbornness and biscuits? You’d better believe it. Do they keep the whole community from falling through the cracks? Absolutely.

    So here’s a genuine, sarcastic-but-serious thank you to every support group, volunteer, and charity keeping the MS circus running. If you ever wondered who the real unsung heroes are it’s the lot turning lived chaos into lifelines.

    Raise a mug (or a wheelchair, or just an eyebrow) for them they’ve earned it.

    Conclusion: Embrace the Weird, Survive the Storm

    Living with MS means forever learning a new dialect of pain, fatigue, and absurdity. The “invisible code” is always changing, but your ability to listen and laugh might just be the best tool you have. Don’t sugar-coat it. Don’t let anyone else either.

    So here’s to listening to your body, celebrating every little win, and flipping MS the metaphorical V-sign as often as possible. You’re not alone. And you’re not invisible.

    Now, go on decode the next bloody signal. And if you’re looking for rainbow platitudes, you’re in the wrong blog.

    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.

    We’re sat here me, Albertine, and the kind of silence that means a bad idea is about to become a plan discussing getting a dog. Again. Yes, a dog. Because apparently I haven’t collected enough chaos already.

    History lesson: we’ve done rescue before. Twice. Hard mode only. First up, the German Shepherd a breeding cash cow someone ran into the ground. We fixed the health, fed the soul, and then one day she keyed in on my son like he’d personally repossessed her puppyhood. Full charge, ears back, fear aggression blazing. Turns out he looked a bit too much like the previous owner and trauma doesn’t read bedtime stories. Advice was taken. Tears were had. We rehomed her with people who could give her the space and structure she needed. That was a funeral in everything but flowers.

    Then came the Staffy. Completely bonkers. Bought her off someone who thought “discipline” means “violence” and “care” means “sell it quick.” She was a live wire with seven kinds of unfinished business. We worked. She healed, mostly. And we found her the right forever. We were the halfway house with biscuits.

    But here’s the bit they never put on the adoption posters: once you’ve lived with an animal, the house doesn’t feel like a house without one. Furniture sits heavier. Air stands still. You notice the quiet and it notices you back.

    Practicalities? I’m in a wheelchair. Albertine’s on sticks or chair depending on the day and the weather’s opinion of her joints. Walks? Not an issue. I can clip the lead to the chair and we can do miles like a small parade with complaints. Vets? Down the road. Logistics aren’t the problem; humans are. Always are.

    “Don’t get a dog or we won’t visit,” say certain family members who currently visit on the equinox and the second Tuesday of Never. Newsflash: if you only appear four or five times a year, you’re not a stakeholder; you’re a seasonal special.

    Breed? I’m Staffy-curious. Good hearts, good with kids, decent security if your doorbell is shy. I’m not daft: rescue comes with luggage. Buying a year old Staffy might come with a smaller suitcase than a seven-year-old with a criminal record. But I’m a big believer in this: let the dog choose me. If you don’t feel that click that “we’re idiots together” moment you’re just renting a personality.

    Meanwhile, the sky’s threatening melodrama. Dark clouds, no heatwave, air that smells of arguments. Rain brewing. Perfect dog-choosing weather: we all feel a bit tragic and honest when the barometer drops.

    Monday’s the grandson’s birthday off to Plymouth we go, pockets full of snacks and the kind of optimism you only feel right before getting rained on sideways. And in four months, retirement beckons like a dodgy Groupon. I’m stressed, I’m tired, and yes, I’ll keep working because capitalism says rest is for people with inheritance and I’ve got biscuits to buy.

    So: do we do it? Yes. Because dynamics need shaking. Because houses need heartbeats. Because the right animal doesn’t just fill a space it changes the air.

    And if certain relatives squeal? Lovely. The dog likes squeaky toys.

    Notes For The Sensible (there aren’t many) We’ll meet the dog in neutral ground, twice.

    We’ll ask about triggers, cats, kids, wheelchairs, umbrellas, and men in hats.

    We’ll commit to training like it’s laundry: constant and mildly annoying.

    If it’s not right, we walk away. If it is, we make it right.

    The Weather Part (Because Britain) Storm vibes: on. Umbrella: haunted. Mood: Staffy-shaped. Afternoon Today’s forecast: Wheel rolls. Stick taps. Lead clips. Clouds lower like rent. Some hearts bark before they beat.

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

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