Multiple sclerosis  is My Living Hell

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All posts tagged Disability by Multiple sclerosis is My Living Hell
  • 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

    🕯️ About Me Old soul. Frayed nerves. Unapologetically alive.

    I am not here to soothe you.

    I write from the edge of something — something most people spend their lives running from. Illness. Silence. Being forgotten. The parts of life that don’t make polite conversation.

    I live with Multiple Sclerosis, but MS is just the symptom. The real story is what it strips away — comfort, time, patience, pretence — until all that’s left is you. And then what do you do with that raw truth?

    You write. You cast. You curse a little, love a little, and sit with things others fear. You feel people’s hearts before they speak. You laugh darkly at the ones who don't believe you’re really ill, and bless the ones who show up anyway.

    I’ve got one foot in the mundane world and one in something stranger — older. I read people. I hear what they don’t say. I know when a storm is coming before the clouds break. And I’ve learned that the truth — however cracked, however strange — is worth writing down.

    🌑 Welcome to My Living Hell Where the lights flicker, the truth slips out, and the fridge is always humming.

    This blog is part journal, part ritual, part middle finger to a world that tries to polish pain into something palatable.

    I don’t do toxic positivity. I do real. I do heatstroke visions in the conservatory. Conversations with the fridge. Ghosts of family past. Wheelchairs with homicidal tendencies. And moments of stillness so sharp they cut through the noise.

    There’s love in here — somewhere beneath the salt and ash. But you’ll have to sit with the dark to find it. That’s the deal.

    So if you’ve ever been made to feel like you were “too much,” “too complicated,” or “not enough” — come closer. But gently. The veil’s thin here. And I see straight through.

    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.”
    
  • Posted on

    So, picture this: I’m staring at my latest MRI, and what do I see? A delightful grey mush, like someone dumped a cumulus cloud into my skull and said, “There — best of luck.” Not a brain so much as a haunted fog machine on the fritz. The consultant just looked at me, that classic NHS stare — part clinical, part bewildered awe — and said, “I genuinely don’t know how you’re still functioning.” Cheers, doc. Real vote of confidence, that.

    Let me tell you, the damage isn’t exactly localised. It’s like MS threw a party in my central nervous system and invited the entire cast of The Exorcist. Corpus callosum? Fracked. Spine? Swiss cheese. Bowels? Shall we say… unpredictable. Heart? Oh, now that’s the fun bit — apparently Warlock (that’s my MS, in case you’re new here) decided to throw in a few heart attacks just to keep things lively. Four so far. Three I stayed home for, because what’s the NHS going to do, offer me tea and a waiting list? The fourth landed me in hospital. Frankly, I wish I’d stayed in bed.

    Not that the staff weren’t brilliant. They were — heroic, overstretched, masked-up angels during that delightful viral apocalypse we all lived through. But I came home… different. Breathing like Darth Vader in a heatwave, heart working at 60% capacity, kidneys sulking, and — oh, cherry on top — they found a tumour on my spine. Thankfully not the nasty sort, but still, another surprise guest in this body of horrors.

    That was about seven years ago, I think. Time’s a blur when your memory’s patchy and reality feels like a badly written sitcom. I stopped going to the doctors after that. They didn’t get it. Didn’t get me. Kept staring at the clipboard like it might contain answers. It didn’t. The only thing worse than being ill is being misunderstood while ill — feeling like death, terrified, stressed out of your gourd, and being told, “There’s nothing more we can do.” You know what that does to a person?

    Panic. Raw, soul-rattling, scream-into-the-pillow panic. Ever wanted to die just so the pain would stop? I have. Ever lived through that every day without a break? Welcome to the fracking carnival.

    I’m already eccentric — now I’m full-on arcane. Friends? Gone. Either dead, or ran the second I said “diagnosis.” Couldn’t handle it. Couldn’t handle me. Pity, really. I had a lot to give. Still do. But when you’re this far off the map, people stop visiting.

    I don’t trust anyone anymore. Life’s become one long stress fracture. I’ve got knowledge in my bones, wisdom hard-won from staring death down while sitting in a mobility scooter with a wonky wheel — and no one to pass it to. That’s the real tragedy. When your gifts have nowhere to go, no one to receive them.

    This is part rant. Part confession. Part battle cry.

    This is me.

    Still here. Still kicking (even if my legs don't always agree). Still making jokes in the dark because it’s the only light I’ve got.

    And Warlock? He can frack right off — I’m not done yet.

    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. sick@mylivinghell.co.uk

           “The views in this post are based on my personal  
              experience. I do not intend harm, only honesty.”
    
  • Posted on

    Congratulations, you’ve woken up! Time to play: What’s Broken Today?

    Your goal: make it through the day without crying, swearing at your legs, or Googling “is this normal or am I dying?”

    Choose your path below. Choose wisely. Or don’t. MS doesn’t care.

    ☀️ Morning – The Wake-Up Lottery You open your eyes. Sort of. Everything's a bit... off.

    Do you: A) Feel rested and refreshed? [HAHAHAHA nope. Roll again.]

    B) Feel like you’ve been mugged by exhaustion in your sleep? → Fatigue wins the round. Take 5 damage to motivation.

    C) Can’t feel your left arm? → You’ve unlocked: Morning Numbness Mode. Hope you didn’t need to hold anything today.

    🚿 The Shower Scene Hot water. The great equaliser. But today, your body has other plans.

    Do you: A) Take a normal shower like a normal person? [Error 404: Normal not found.]

    B) Overheat and nearly pass out while conditioning your hair? → Heat Sensitivity unlocked. You’re now a human candle. Stay cool (literally).

    C) Drop the soap three times because your fingers forgot how to grip? → Coordination loss! Bonus: Slippery floor, surprise danger!

    ☕ Breakfast Choices Time to eat. Or attempt it. Your hand-to-mouth skills are on a random difficulty setting.

    Do you: A) Make eggs without issue? [Dream big, champ.]

    B) Forget what you were making mid-toast and stand staring at the kettle? → Cognitive Fog strikes again! You are now late and confused, but still hungry.

    C) Burn your tongue because it took too long to realise your tea was hot? → Nerve damage for breakfast, anyone?

    🧑‍💻 Midday Mayhem Time to work, or function, or pretend to. Let’s see what fresh chaos arrives.

    Do you: A) Sit comfortably and type with ease? [Only in the fantasy genre.]

    B) Experience sudden eye twitching, blurry vision and shooting pain down your spine? → Bingo! You’ve triggered Lhermitte’s Sign. Bonus: optical migraine starter pack!

    C) Realise you’ve been sitting weird and now your legs are asleep? → Double numb legs – the sequel no one asked for.

    🛋️ Afternoon Fun: Nap or Collapse? Fatigue is back. It brought friends.

    Do you: A) Push through like a hero? → Well done, you now feel like a zombie that regrets everything.

    B) Nap for 2 hours and wake up in a new dimension with no idea what year it is? → Temporal Confusion Mode Activated.

    🌙 Evening – The Grand Finale The body is tired. The brain is soup. Dinner is optional.

    Do you: A) Cook a meal? Narrator: They did not.

    B) Order takeaway because your hands are too shaky to hold a knife? → Valid choice. +5 sanity. -£20 bank account.

    C) Cry because your legs spasm during a TV ad for toothpaste? → MS Mood Swing. Roll for emotional stability. It’s a 1.

    🏁 The End (Until Tomorrow) You’ve survived another round of “What Will MS Ruin Today?” Your reward: a weird new twitch in your eye, and the chance to play again tomorrow.

    ✨ Bonus Content: Cheat Codes for Coping Sarcasm: Unlimited ammo.

    Snacks: +10 to morale.

    Naps: Use liberally. Ignore haters.

    Friends who get it: Legendary tier loot.

    People who say “But you don’t look sick!”: Throw them into the sun.

    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. sick@mylivinghell.co.uk

           “The views in this post are based on my personal  
              experience. I do not intend harm, only honesty.”
    
  • Posted on

    🧠 Symptoms of MS: The Obvious Greatest Hits

    Tired for No Reason You slept 12 hours, drank 3 coffees, and you're still knackered. Congratulations, it’s not laziness — it’s fatigue. Chronic, soul-sucking, "please let me nap in the cereal aisle" fatigue.

    Wobbly Walking Walking like you’ve had 8 pints… at 9am… while stone-cold sober. Balance issues, because apparently your legs didn’t get the memo from your brain.

    Blurry or Double Vision Your eyes play ‘spot the difference’ with reality. One of them’s lying, and neither has a clue what they’re doing.

    Numbness or Tingling That fun pins-and-needles feeling. Except it’s not from sitting funny — it’s from your brain throwing a tantrum.

    Weakness Arms, legs, or both suddenly feeling like cooked spaghetti. Good luck opening jars. Or standing. Or functioning.

    Slurred Speech You sound like you’re drunk, even if you’re painfully sober and just trying to ask for a biscuit. Bathroom Betrayal Bladder and bowels doing their own thing. Urgency, accidents, or the joy of constipation that could turn coal into diamonds.

    Mood Swings Crying because the teabag split. Laughing maniacally at absolutely nothing. Just another Tuesday with your brain on shuffle.

    🎩 The Lesser-Known (But Equally Rubbish) MS Delights

    Electric Shock Sensation (Lhermitte’s Sign) You tilt your head and BAM — your spine thinks it’s been struck by lightning. For no reason. Because why not?

    Itching Like You're Infested with Ghost Fleas No rash, no bites, just you, scratching like a Victorian chimney sweep with scabies.

    Heat Sensitivity Summer? Oh no, darling. A hot shower might as well be lava. Prepare to wilt like a sad Victorian poet.

    Cognitive Fuzz (Brain Fog) You walk into a room and forget why. You forget words. You put your phone in the fridge. Basically, your brain’s on “buffering…”

    Spasticity Muscles tightening up like you're trying to hold in a fart during a funeral. Only it’s involuntary. And constant.

    Sexual Dysfunction The romantic thrill of numb genitals and nerves that ghost you mid-pleasure. How sexy.

    Speech and Swallowing Problems Chewing and talking becomes a weirdly choreographed ballet of not choking. Miss a beat, and it’s dinner-on-the-ceiling time.

    Hearing Loss (Rare, but possible) What? Sorry? Come again? — not selective hearing, just your ears being as unreliable as the rest of your nervous system.

    Final Thoughts: MS — it's like your brain has installed Windows 95 and keeps trying to run modern life. Expect random errors, lagging limbs, and the occasional blue screen of emotional doom. You didn’t ask for this mess, but here we are. Stay strong. Laugh darkly. Nap often.

    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. sick@mylivinghell.co.uk

          “The views in this post are based on my personal  
              experience. I do not intend harm, only honesty.”
    
  • Posted on

    Oh, another night in my personal version of Dante’s Inferno—just as delightful as the last. It’s funny how the nights just roll into one giant, sleepless horror show, starring yours truly: the eternally exhausted insomniac. Sleep? Ha! That’s just a luxury for people who aren’t forced to dance to the bladder’s hourly encore performance. And of course, this whole tragicomedy began because I had the sheer audacity to indulge in some sugar-laden jam. Sugar—apparently the mortal enemy of my wretched existence. Add to that the fact that my body decided to go full diva and refuse any animal fats, so now I’m stuck with a vegan diet. Except even the plant oils have formed a personal vendetta against me, turning mealtimes into a game of “Will This Kill Me or Merely Torture Me?” But wait, there’s more! Let’s not forget my lovely companion: multiple sclerosis. Yes, that dear old friend makes sure that pain and spasms are constant guests at this midnight carnival. A twitch here, a stabbing ache there—such delightful party tricks. And of course, the nerves love to join in, turning everything into an electrifying circus of agony. It’s like my entire body is in open revolt—because why the hell not? Dairy? Oh, dairy’s the showstopper. One whiff of it and I’m stuck in an endless cycle of gut-wrenching bathroom performances that would make even the most jaded horror director cringe. There’s nothing quite like losing your insides while your nerves are throwing their own spasm-fueled mosh pit. Sometimes, when the pain’s at its peak and sleep is a distant dream, my mind wanders to that dark, seductive thought: death. Not that I’d actually go there—I cling to life out of sheer stubbornness or maybe spite. But in those raw, bleak moments, it’s hard not to wonder why this is all happening to me. But then again—why the hell not? Life’s a twisted carnival, after all, and every night’s just another ride on this endless, blood-curdling loop. And so I ramble on, because what else is there to do?

    “The views in this post are based on my personal
    experience. I do not intend harm, only honesty.”

  • Posted on

    It's 2 in the morning, and I've managed a whopping 20 minutes of sleep. What a treat! Looks like it's going to be another long night of tossing and turning. Sleep? What’s that? The pain in my stomach and lower intestines is off the charts, and breathing feels like a luxury I can’t afford. I’m just lying here, wondering if I’m going to survive the night. It’s a real joy, let me tell you—staring into the dark, clutching my pillow like it’s a life raft in a storm. Eventually, I might squeeze in a catnap until 6, if I’m lucky. Oh, and let’s not forget the delightful MS nerve pain that’s decided to throw a party in my body. The side of my throat is in spasm, and my left side is completely numb—because who doesn’t love a little extra excitement in the middle of the night? So, yeah, not exactly a good night.

            “The views in this post are based on my personal  
              experience. I do not intend harm, only honesty.”
    
  • Posted on

    Hello World, Right now, I’m in the middle of a pretty severe MS flare-up, and I have to say, it’s been a tough one. My whole left side is numb, like I’ve had a stroke—or at least, that’s what it feels like. My balance is completely off, and the cognitive stuff is intense. It’s taking me forever to type this, and my head feels like a bowl of pea soup—just foggy and heavy. Lately, the front of my chest on the left side has started to feel... weird. I don’t even know how to describe it, but it’s like electrical shocks, and the nerves are on overdrive. It’s a feeling of total “headfrack” that I’m having trouble explaining, but I wanted to put it out there. Also, as if things weren't challenging enough, my wheelchair broke down, so now I’m stuck waiting on a call from the wheelchair services. Could be a long wait. In the meantime, I’m on the hunt for a cheap secondhand Q100 wheelchair. If anyone has tips or knows where to look, let me know! sick@mylivinghell.co.uk

             “The views in this post are based on my personal  
              experience. I do not intend harm, only honesty.”
    
  • Posted on

    Welcome to the Dark, Brilliant, Weird Little Empire of Chronic Truth — ruled by none other than Warlock Dark. This is no ordinary blog. This is a bastion for the broken, a fortress of the funny-boned, a castle built from sarcasm, tea, and nerve damage. Here, the pain is real, the humour is darker than a GP's coffee, and the bladder never sleeps.

    📅 THE REAL STUFF (No Bull, No Fluff)

    MS isn’t just a condition. It’s a full-body existential prank. But for anyone newly diagnosed or wondering what the hell is happening to their nervous system, here’s a raw, real, non-terrifying breakdown:

    Numbness & Tingling — Fingers, toes, tongue, lips, everywhere. Like being slowly frosted by invisible fairies with bad intentions.

    Vision Problems — Blurry, ghosted, monocular mischief. Suddenly you're part-cyclops.

    Muscle Weakness & Spasms — Legs fold, arms tremble, and occasionally you Riverdance in your sleep.

    Fatigue — Not "tired." Obliterated. Drained like an iPhone from 2009.

    Cognitive Wipeouts — Losing track of the day, words, names, or why you're in the fridge again.

    Bladder Madness — Two-hour toilet timer. Never off-duty. Never apologetic.

    Pain — Burning, stabbing, aching. No metaphors required. It just hurts.

    🌿 THE NOT-INSANE NATURAL STUFF

    Move It — Yoga, stretching, tai chi, or just rolling your neck while cursing the heavens.

    Eat Real — Anti-inflammatory stuff helps. Leafy things. Omega-3s. Less deep-fried beige.

    Sleep Like You Mean It — Proper rest. Screens off. Mind down. Rage optional.

    Mind Rituals — Journaling, meditating, ranting to the void.

    Talk — To people. To animals. To plants. To invisible gods. Whatever keeps you tethered.

    🇬🇧 THE BRITISHLY BLEAK HUMOUR SECTION

    You know how it is:

    You wake up feeling like a boiled skeleton. You try to stand and your leg says, "LOL no." You make it to the loo just in time to almost make it. Your doctor smiles, hands you a leaflet written in 1986, and tells you to "try breathing exercises."

    And yet... you persevere. With a teacup in one hand, and the raw, burning rage of 10,000 misfiring neurons in the other.

    🕯️ QUOTES FROM WARLOCK DARK (Volume I)

    "My nerves are not broken — they are wild serpents, and I am learning to speak their tongue."

    "This is not weakness. This is weather. Storms live inside me."

    "I have seen the gods. They were waiting for their prescription refills too."

    "Fatigue is a form of time travel. You blink, and the day is gone."

    "This chair is not my end. It’s my war beast. Roll me to the gates, I dare you."

    "Magic lives in broken places. I’m practically radioactive."

    ✍️ OUTRO FROM THE CHRONIC THRONE

    So yes — the tongue is numb, the bladder’s a traitor, and the storm never really stops. But the mind? Still alive. Still wired weird. Still writing.

    Stay tuned for Volume II: "Fatigue & Other Black Magics"

    And remember: this is not recovery. This is reclamation.

    Long live the Warlock. Long live the Chronic Empire.

    🔮 Warlock Dark’s Quotes from the Edge (A.K.A. Mind Melt Time) Now, let’s go full myth. Let’s make MS epic. Let’s reforge this thing into weird, beautiful, apocalyptic poetry — courtesy of Warlock Dark, the ancient spirit of pain, mischief, and inconvenient wisdom:

    🕯️ “My nerves are not broken — they are wild serpents, and I am learning to speak their tongue.” — Warlock Dark

    🕯️ “This body is a cathedral struck by lightning. I don’t need healing. I need worship.”

    🕯️ “Doctors gave me a folder. I gave them a prophecy.”

    🕯️ “I have seen the inside of time. It crackles, it burns, it forgets its own name. That is what fatigue tastes like.”

    🕯️ “They call it multiple sclerosis. I call it the slow alchemy of becoming something unkillable.”

    🕯️ “Yes, I forget what day it is. Time has no meaning in the Warlock’s garden — only the storms remain.”

    🕯️ “My wheelchair is not a prison. It is a throne on wheels, gliding through the ruins of the ordinary.”

    🕯️ “The gods don’t answer my prayers. They take notes.”

    🕯️ Warlock Dark’s Arcane Quotes for the Chronically Bewitched (Collectible. Utterly unusable. Spiritually necessary.)

    “My nerves are not broken — they are wild serpents, and I am learning to speak their tongue.” – Warlock Dark, Volume I: ‘The Tingle Codex’

    “This is not weakness. This is weather. Storms live inside me.” – Warlock Dark, Volume II: ‘The Internal Forecast’

    “I have seen the gods. They were waiting for their prescription refills too.” – Warlock Dark, Volume IV: ‘Waiting Room Rituals’

    “Fatigue is a form of time travel. You blink, and the day is gone.” – Warlock Dark, Volume V: ‘Chronicles of the Missing Afternoon’

    “This chair is not my end. It’s my war beast. Roll me to the gates, I dare you.” – Warlock Dark, Volume IX: ‘Battle Hymns for the Seated’

    “Magic lives in broken places. I’m practically radioactive.” – Warlock Dark, Untitled Fragment, scrawled on a napkin and burned. The gods are deaf. The stars are mute. The dark is deep, and the dark is acute. But still—he speaks, in verse and venom, His tongue numb, but truth within 'em.

    For even in ruin, the Warlock remains, Wreathed in electric storms and phantom chains. He writes his spells in blood and pain, And dares the void to speak his name.

    looking to buy a cheap 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.”