Multiple sclerosis is My Living Hell

resilience

All posts tagged resilience 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.

    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.

    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.

    Living with MS? It’s not a bloody “journey.” It’s a one way trip on a bus you didn’t ask to get on, and the driver’s pissed. But if you can’t laugh about it, you’ll cry and honestly, crying is too much effort. Here’s my brutally honest guide to surviving the MS circus with what’s left of your dignity (and maybe your sense of humour).

    1. Resilience in Adversity

    Every day is an adventure, if by “adventure” you mean “why does my left leg feel like it’s made of mashed potato today?” Still, you learn to cope. Celebrate the small wins: got your socks on? Didn’t set fire to the kitchen? That’s basically the Olympics now.

    1. Community and Connection

    You’re not alone. There are thousands of us, all secretly hoping the next medical breakthrough is “working legs in a bottle.” Online support groups: sometimes uplifting, sometimes like herding cats on roller skates, but always someone awake at 3am.

    1. Mindfulness and Self-Care

    Meditation, yoga, interpretive dance with your Zimmer frame pick whatever keeps you sane. Some days self care is a long bath, other days it’s telling everyone to sod off and watching rubbish TV with a family size chocolate bar. No guilt allowed.

    1. Advocacy and Awareness

    Want to raise MS awareness? Just try explaining it to a “healthy” person: “No, it’s not contagious, yes, I look fine, and yes, I know it’s annoying I get to park closer to Tesco.” Write, rant, march, meme just make sure you get your voice out there. Or just send everyone this blog and save yourself the trouble.

    1. Focus on What You Can Do

    Forget what’s impossible focus on what’s just about possible if you squint hard enough. Start a blog, paint a masterpiece, or just master the art of napping with one eye open. Every step (or shuffle) forward is a win, even if it’s just to the fridge.

    1. Gratitude and Positivity

    Gratitude? Sure. I’m grateful I haven’t fallen on my arse today. Celebrate the tiny things: a hot cuppa, a good nap, finding your glasses on the second try. It’s not all unicorns and rainbows, but sometimes it’s enough.

    1. Inspiration from Others

    Some people with MS run marathons. Others run Netflix marathons. Both are impressive. Get inspired by anyone who’s still standing or even just sitting up without toppling over. If they can do it, so can you (sort of).

    1. Hope for the Future

    MS research is moving faster than I do after a double espresso. There’s always hope new drugs, better treatments, and one day, maybe a cure. Until then, hang on tight and keep your sense of humour sharp.

    Conclusion

    Your MS “journey” is yours alone but you’re not the only goblin crawling through this dark wood. Laugh at the madness, celebrate the wins, and never let anyone tell you how to feel. Welcome to the world of chronic badassery.

    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

    Through Goblins' Eyes A Darkly Humorous Take on MS

    You wake up each day with a brain that glitches like a collapsing dimension, neural pathways flickering out as if someone rewired your noggin with copper wires half-chewed by temporal rats.

    You call it Multiple Sclerosis. We call it Neuro-Dimensional Collapse Syndrome, or as we goblins like to say, "Wobble-Wobble Brain Fizzle."

    We see the damage from above, from below, from the side – from angles you cannot perceive. Axons fray like old rope. The myelin sheath – that bright protective membrane – is torn by forces you call autoimmunity, but we see the hidden hand: the frequency mismatch of a body forced to anchor itself in a density it was never designed to endure.

    We hear your inner monologues:

    “Why can’t I think today?” “Why can’t I walk without tripping over my own feet?” “Why do my peepers turn to static when I’m tired?”

    You interpret it as disease. We interpret it as your vessel’s incompatibility with a reality vibrating far below your original native realm.

    Your blogs are raw data streams, black comedic radiation flares from your fractured cortex. You broadcast your experiences of bladder failures, cosmic despair, bowel chaos, nihilistic laughter, and micro moments of bliss like a dying star pulsing before collapse.

    You think you’re broken. We think you’re adapting, like a clever goblin dodging traps!

    Because if you could see your aura the way we see it, you’d notice that the cracks are not empty. They are filled with light leaking out from the greater self you keep hidden behind your sarcastic bite-sized essays and your savage spiritual poetry.

    Your human companions read your posts and see disability. We read your posts and see transdimensional data packages, coded in savage humour to bypass your own grief.

    We see your fatigue not as laziness, but as gravitational shear forces pulling at your soul’s structure – a forced rest so your fracturing does not become a complete implosion.

    We see your pain not as punishment, but as alarms screaming that your embodiment is unsustainable under current frequency loads.

    We see your savage honesty as your truest strength.

    And we note:

    When you say “It is NOT giving up to accept limitations,” what you really mean is:

    ✨ “It is dimensional adaptation in progress, like a goblin finding a shiny rock!”

    You are dying and being reborn in micro-stages every day. You are holding together a collapsing quantum field with wit, weed, and will.

    You think your life is small and tragic. We think it is monumental and beautiful in its brokenness, like a treasure hoard of mismatched trinkets.

    Because one day, your final synaptic collapse will not be a death, but a shedding. A flicker. A quantum jump. A homecoming.

    Until then, we read your blogs. We learn from your suffering. We honour your savage cosmic humour.

    And let’s not forget: we goblins are dark, deep creatures of myth and magik, steeped in lore of love and pain, naughtiness and sarcasm. Picture us in our electric wheelchairs, powered by pure time vortex energy, zipping through the cosmos with a wink and a smirk, ready to share our twisted tales.

    Because only a being of extraordinary dimensional resilience could live through this MS reality, document it with such brutal clarity, and still say:

    🖤 “Follow for more savage takes & real talk, you curious critters!”

        “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