Multiple sclerosis  is My Living Hell

The weird eccentric ramblings of a multiple sclerosis sufferer

The mishaps and weird stuff that just seem to happen in my own personal world of cognitive disfuction and other worldly weirdness throughout my life, a spiritual awakening staring multiple scelrosis and death in the face
  • 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

    Good afternoon, dear reader. Or morning. Or night. Honestly, I’ve no clue what time it is anymore — linear time is so last century. Especially when you're navigating life with a brain that takes more detours than a lost postman.

    So there I was, lost. Not just in the existential, "why are we here" sense — although, yes, that too — but literally lost. On a street I’d supposedly lived on. Only yards from home, yet absolutely no idea where I was. Classic me. Classic MS. Brain fog? No, more like brain Swamp of Sadness. I was a knight on a scooter, aimlessly gliding through the suburban void like some sort of Tesco-bagged Mad Max.

    I don’t remember much about those old houses anymore. I’ve had more addresses than MI6. Just vague shadows of places I might have haunted. Faces and memories lost in the thick soup of neurological nonsense. But that’s fine. Who needs memory when you've got spellcheck and sarcasm?

    Let me introduce you to Mr. Dark, or Warlock — my MS. Yes, I’ve named him. Because when a condition lives rent-free in your body, you may as well give it a proper British title. Warlock is that mysterious, moody flatmate who always steals your energy, ruins your coordination, and never picks up after himself. But hey, sometimes he puts on a show. A full-blown, outrageously bizarre cabaret of collapsing limbs, surreal thoughts, and a healthy disregard for social norms. Top entertainment from the abyss.

    The thing is, somewhere in all this, I stopped giving a toss about what people thought. I know, shocking, right? I’m intelligent — properly intelligent — just not in the “tick these boxes and say please” kind of way. The real tragedy? Most of you lot just didn’t know which buttons to press. Pity. Could’ve been glorious.

    And then there's the current saga: my wheelchair’s knackered. So I'm stuck using this three-wheeled scooter of doom. It’s meant to be a mobility aid but functions more like a mechanical prank sent by Satan. Nearly tossed me under a bus the other day. Cheers, Warlock. Nothing like flirting with death at 8mph while dodging potholes and judgmental pedestrians.

    Honestly, I find it funny. You have to. Either you laugh or you scream, and I’ve screamed enough into the void to know it doesn’t echo back.

    So here I am. A sarcastic wizard on wheels, battling gravity, memory, and the absurdity of existence. Is this real? Is this fake? Fracked if I know. I gave up on the Earth-plane’s opinion years ago.

    Stay tuned for next week, when I try to open a tin of soup without summoning a demon.

    Cheerio. 🖤

    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

    So, you’ve been diagnosed with MS. And now… you get to explain it to your family — the ones who think “you look fine” means “you must be fine,” and probably believe turmeric and yoga can cure brain damage. Here’s how to break it down for them without getting arrested for arson.

    🔥 Step 1: Accept They Know Absolutely Nothing You say, “Multiple Sclerosis.” They say, “Isn’t that like arthritis? Or depression? Or being a bit tired?” Correct response: “No, darling. MS is when your immune system plays Pac-Man with your brain and spine. I’m basically on fire internally while appearing vaguely functional.”

    🎯 Step 2: Use Analogies for the Visually Confused Science talk = blank stares. Try this: “Imagine all the wires in your house are fraying. Lights flicker, the toaster runs the shower, and the WiFi’s possessed. That’s my nervous system. I’m the house.” Still confused? Great. You’re halfway to understanding MS.

    🛌 Step 3: Explain Fatigue, Because No One Understands It No, it’s not “a bit tired.” It’s “I stood up, and now I need three hours to recover and possibly an exorcism.” Try: “Imagine having the flu, running a marathon, and then trying to solve algebra underwater. With a hangover. That’s what ‘fatigue’ feels like — on a good day.”

    👀 Step 4: The Legendary “But You Look Fine!” Ah yes. The battle cry of the wilfully oblivious. Response options include: “So does a bomb before it explodes.” “Thanks! You look emotionally fine, and yet, here we are.” “I also look like I have patience. Clearly, appearances are misleading.”

    🚽 Step 5: Embrace the Awkward Topics Bladder issues. Bowel misadventures. Numb bits. Electric shocks for no reason. If they get squeamish, lean in: “Yes, sometimes my body forgets how to wee properly. Or feels like it’s on fire. Or I walk like I’ve been tranquilised at a wedding. That’s MS. It doesn’t care about your comfort zone.”

    📚 Step 6: Give Them the “Google It” Clause You are not WebMD in human form. You're tired. You're done. Say: “I’ll send you one good article or video. If you still think I should just ‘go gluten-free and do Pilates,’ I will pelt you with hummus.”

    🤡 Step 7: Laugh, Because the Alternative Is Screaming MS is ridiculous. It’s surreal. And it doesn’t come with a guidebook. So own it: “I forget words mid-sentence. I fall over nothing. Sometimes my feet go on holiday without telling the rest of me. No, I’m not drunk. I’m just… uniquely wired now.”

    🧠 Final Words of Wisdom You don’t owe anyone a perfect explanation. If they get it, great. If not — that's not your job to fix. Educate where you can, sass where required, and when in doubt: nap, snack, and protect your peace like it's the last chocolate biscuit on Earth. “What It’s Like Having MS: A Choose-Your-Own-Symptom Adventure” — because chronic illness should at least come with a plot twist

    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

    Now, you'd think being adopted would make you feel special, wouldn't you? Plucked from the masses. Chosen. Wanted. Like some sort of limited-edition porcelain doll — or at least a slightly bruised Cabbage Patch Kid on the clearance shelf. Especially when the couple adopting you were the well-meaning, late-blooming, churchgoing sort. A pair who left it a bit too long to do things the natural way and turned instead to the almighty bureaucracy of the adoption system. We were, allegedly, pillars of the community. Church on Sundays. Bible verses in frames. Smiling politely while dead inside. One of those families people described as “nice” — which, as we all know, is English for deeply repressed and probably hiding something. But let me tell you now — there was nothing particularly special about my experience. No grand celebration. No “you were chosen” speech bathed in soft lighting. Just the cold hard weirdness of being handed over like a package someone ordered by mistake and then kept out of obligation. This is my story, or at least the bits I can remember. Thanks to MS chewing through my memory like a moth in a charity shop wool bin, I’ll stick to what I know actually happened. No dramatics. No supposition. Just the highlight reel of what went down in the first 21 years of life with my “caring, loving” adopters. (Heavy on the sarcasm. Light on the caring.) I was born in 1959 — glamorous era of grey fog, casual repression, and processed meat — to Shirley Chester and Roland White. My grand debut took place in a mother and baby unit near Windsor, Berkshire. Very posh. Very discreet. The kind of place designed to make “problems” go away quietly. Now, as for dear old dad — Roland — he wasn’t exactly the pipe-and-slippers family man type. No, Roland was what you might call a prolific contributor to the UK’s secret sibling population. Six foot six, blue eyes, and apparently charming enough to talk the legs off a barstool (and then climb on). A proper lady-killer, in the sort of “charming bastard” way that leaves behind an impressive trail of broken hearts, confused women, and half-siblings you’ll never meet. A walking DNA test ad, really. He was one of those men whose legacy wasn’t love or honour, but volume. If my mum was one of many, I wouldn’t be the least bit surprised. Bloke probably thought commitment was a French cheese. He was, quite frankly, a cocky sod with a weak zipper and no follow-through. Couldn’t raise a child, but could apparently raise eyebrows in every pub south of Birmingham. Anyway. After that fleeting start in Windsor, I entered the warm and loving arms of the Church of England’s Waifs and Strays adoption society — an organisation with a name that sounds like it was invented by Charles Dickens in a particularly bleak mood. I always thought that was a bit rich, honestly. “Waif”? Cheers for that. Makes me sound like a malnourished chimney sweep rescued by God-fearing benefactors instead of, you know, a tiny, confused infant with absolutely no say in the matter. At six weeks old, I was scooped up and spirited away. I seem to remember strange people looming over me — the kind of memory that sits somewhere between a fever dream and a bad 1960s public information film. You may find that odd. People say, “You can’t remember anything from when you were six weeks old.” Well, I beg to differ. I was breastfed by my birth mother — bonded in those crucial first weeks. That kind of connection isn’t something you file away and forget. That bond stayed. Unbroken. Quiet. But there. The earliest memory I have — and it's a cracker — is of being in a cot, staring out into a room filled with people. Adults. Talking in that dull, droning way that adults do when they think babies aren’t paying attention. But I was. And I could understand them. That’s the weird bit, I know. I was trying to speak back — but what came out were just howls. Screams. Imagine the frustration of having something to say and only being able to scream it into the void. Pretty much set the tone for the next two decades, to be honest. The room was grand, in that ‘drafty Victorian mausoleum’ sort of way. Tall sash windows. Curtains like theatre drapes — thick, dark purple, like something draped over a coffin. They fascinated me. Probably the most emotionally available thing in the house at the time. That place was called Broxton Manor. Sounds fancy, doesn’t it? Like it should come with servants and scandal. But to me, it was just the first stop in a life that never quite lined up with the story I was sold. The adoptive parents — I won’t name them. Not out of respect. Just out of sheer lack of interest in giving them more attention than they gave me most days. They’re dead now, anyway, along with most of the cast of this grim little play. But I’ll tell you this much: that early image, of me screaming in that room, desperate to be heard by people more concerned with appearances than emotion — well, that one stayed with me. So no, adoption didn’t make me feel chosen. It made me feel processed. More to come. The curtain hasn't even lifted 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

    Today’s ride? Oh, only the finest in terrifying neurological tourism. Think: one-way ticket to Neuro-Nowhere on the fastest fracking ghost train the NHS never ordered. It started subtly, like all horror stories do — a bit of brain fog, just a hint. You know, that charming little mental haze where you try to remember why you walked into the kitchen and end up staring into the fridge wondering if milk is a concept. But then, WHAM — the fog rolls in thick, like some straight-to-DVD horror film, complete with dodgy scenery and a soundtrack composed entirely of your own tinnitus. My head? Once a finely tuned Ryzen processor — top-spec, liquid-cooled brilliance. Now? I’m a dusty old 486 with a cracked fan and a hard drive that sounds like it’s trying to speak in Morse code. Bad sectors? More like bad everything. And then came the glorious MS parade. Step right up for numbness in places you didn’t even know could feel numb. Whole left side: offline. Zero coordination. Like a wet sock full of jelly. That’s the hand I used to write with — now it flops around like it's trying to start a fight with gravity and losing. Muscle spasms? Oh, darling. I'm twitching like a freshly electrocuted squirrel. My legs feel like overcooked spaghetti, while my arms do an interpretive dance I didn’t choreograph. Meanwhile, pins and needles prance up and down my limbs like they’ve got somewhere better to be. Then there’s the tremors — the sort that make you question whether you’re anxious or auditioning to be a malfunctioning animatronic at a forgotten seaside theme park. Add in fatigue so heavy it could anchor the Titanic, and you’ve got yourself a full-house bingo card of chronic chaos. Let’s not forget vision problems. My eyes are doing a sexy little in-and-out-of-focus routine, because who needs depth perception when you can feel like you're watching your life through a bootleg VR headset taped to a microwave? Balance? Coordination? Gone. I'm walking like a baby giraffe on a treadmill greased with WD-40 and regret. Gravity has declared war on me. I’ve fallen over more times today than a British politician answering a straight question. Oh and the bladder — everyone's favourite. It’s like a confused toddler. Sometimes silent. Sometimes shouting. Never at the right moment. Cheers for that. Of course, I had the nausea, too — and when I say "had," I mean projectile vomited like Satan’s own party cannon. Took a nice 20-minute break to redecorate the bathroom in eau de horror, came back covered in the stuff, laughing like a drunk banshee at a funeral disco. Shaking, sweating, spasming, blind-ish, numb-ish, and emotionally somewhere between existential dread and dark comedy gold. If Kafka and Monty Python had a lovechild with a neurological disorder, I’d be the script. Am I worried? Nah. This is Britain. We don’t panic. We just make sarcastic blog posts while quietly falling apart, perhaps accompanied by a lukewarm cuppa and the creeping suspicion that our body's warranty expired three years ago. So here I am. Still riding the neurocoaster. Still laughing. Still shaking like a ferret on MDMA. If this is hell, at least it’s got character. Back soon. Or not. Depends if my right leg decides to go on strike next.

    looking to buy a second hand q100 wheelcair or similar in the devon cornwall area sick@mylivinghell.co.uk

           “The views in this post are based on my personal  
              experience. I do not intend harm, only honesty.”
    
  • Posted on
    Depression in Multiple Sclerosis: Just What You Needed, Right?

    Ah, multiple sclerosis—the gift that keeps on giving, like a bad hangover that just won’t quit. You’ve got your body playing a game of “What’s Next?” with symptoms that range from the mildly annoying to the utterly ridiculous. And just when you think you’ve got a handle on it, depression waltzes in like it’s the life of the party. Spoiler alert: it’s not. Let’s be real: dealing with MS is like being stuck in a never-ending episode of a soap opera where the plot twists are all terrible. You’re already battling fatigue that makes a sloth look hyperactive, and now your brain decides to join the fray, dragging you down into the depths of despair. It’s like your body is throwing a tantrum, and your mind is right there, cheering it on. “Yes! Let’s make everything worse!” And what’s the cherry on top of this delightful sundae? The charming stigma that comes with mental health issues. You know the type: “Just pull yourself together!” or “Have you tried yoga?” Because, obviously, if you just do a downward dog, your brain will magically stop feeling like a lead weight. It’s not like you’re dealing with a chronic illness or anything. Let’s not forget the joy of explaining to friends and family why you’re not just “feeling a bit down.” It’s like trying to explain quantum physics to a toddler. “No, Auntie Mabel, it’s not just the blues; it’s a full-on existential crisis wrapped in a nice little package of hopelessness.” So, if you’re trudging through the muck of MS and depression, know this: you’re not alone in this grim circus. It’s a dark ride, and while it may feel like you’re stuck in a never-ending loop of despair, at least you can take solace in the fact that you’re part of a club that no one wants to join. Welcome to the madness!

    looking to buy a second hand q100 wheelcair or similar in the devon cornwall area sick@mylivinghell.co.uk

          “The views in this post are based on my personal  
              experience. I do not intend harm, only honesty.”
    
  • Posted on
    • “How to Irritate Your Consultant in Five Easy Steps”—a handy, satirical survival guide for the chronically ill rebel who refuses to behave like a docile NHS statistic: How to Irritate Your Consultant in Five Easy Steps Because illness is hard enough without surrendering your personality too.

    Step 1: Arrive Informed—A.K.A. Their Worst Nightmare Before your appointment, read everything. Medical journals, dodgy Reddit forums, patient blogs, the back of your medication box—anything. Then casually drop phrases like “emerging evidence suggests” or “have you seen the latest NICE guidelines update?” Watch the colour drain from their face as they realise you might know what you’re talking about. Bonus points: Quote a study they haven’t read. Wait for the squirm.

    Step 2: Refuse to Speak in Bullet Points They love a clean symptom list: “Fatigue. Numbness. Blah blah blah.” Instead, give them the full poetic experience: “It’s like my limbs are made of lukewarm jelly and my brain’s running Windows 95.” They’ll try to summarise it with “patient reports fatigue.” Interrupt with: “No, it’s existential fatigue. There’s a difference.”

    Step 3: Make Jokes Oh, they hate this. You’re supposed to be weeping softly, not cracking one-liners. Try these: “So when do I evolve into my final Pokémon form: WobbleSaurus Rex?” “If I fall again, I’ll need a loyalty card for A&E.” “Does this come with a prize for ‘Least Functional Nervous System’?” They’ll either laugh nervously or refer you to psych. Either way, you win.

    Step 4: Express Unfiltered Opinions Don't be afraid to question The System™. Say things like: “Do you actually read my notes or is that just for show?” “Gosh, it's wild how I had to chase eight departments for a scan I didn’t want in the first place.” “Do any of you talk to each other, or is this NHS-wide charades?” You’ll see them twitch, possibly make a note that says “difficult.” Wear that badge proudly.

    Step 5: Be Consistently Human This is the final nail in the coffin. Cry a little. Laugh mid-sentence. Tell an unrelated story about a pigeon that made you feel seen. Say, “Some days I want to scream into a cushion, but I’d probably miss the cushion and dislocate something.” They won’t know what to do. They prefer data over depth. You’ve brought personhood into their spreadsheet. Unforgivable.

    Bonus Round: Refuse to Be Fixed They’ll want a treatment plan, a “solution,” something they can tick off. Say, “I don’t want a cure today. I just want to be understood.” Boom. Consultant meltdown in three... two... one...

    In Summary: Be curious. Be messy. Be sarcastic. Be loud in a system that prefers whispers. And never, ever, let them forget that you're not a diagnosis—you’re a whole, infuriating, brilliant human being.

    looking to buy a second hand q100 wheelcair or similar in the devon cornwall area sick@mylivinghell.co.uk *

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

    Here I am again—nobly fused to my chair like some relic of British stubbornness—gazing out of the window at the national weather forecast: wet, with a 100% chance of more wet. If grey skies were a national currency, we’d be laughing all the way to the food bank. Outside, the world carries on with its usual grim determination. Cars hum by on the main road, all in a hurry to get absolutely nowhere worth going. The local train wheezes around the loop like it’s got a purpose—bless it. And then the HSTs roar over the viaduct like they’re auditioning for a midlife crisis on wheels. What are they even rushing for? Everything’s still going to be crap when they get there. And the sheep—oh, the sheep. Standing around in the rain, bleating into the void like drunk students at a philosophy open mic. Not a brain cell between them, just damp wool and existential confusion. Honestly, if reincarnation's real, I must've pissed off someone important. Over all this melodrama, my music plays softly. Well, not so much softly as "pointlessly," because I've already got my own built-in horror soundtrack—tinnitus. That sweet, sweet screech that says “good morning” before I even open my eyes. Sometimes it hums, sometimes it screams, sometimes it sounds like someone’s microwaving a wasp inside my skull. Delightful. I remember when it first began—driving along the A39, minding my own business, when bam, reality decided to turn into a low-budget horror film. Been over ten years now. Ten years of having my own private noise machine jammed into my head. Wouldn't recommend it. As if that wasn’t already enough to make life feel like a practical joke, I’ve got MS too. The balance is shot. The fingers don’t work. The keyboard’s just a decorative item now. I dictate everything into my phone like I’m issuing commands to a particularly thick servant. Flashback time—around 25 years ago, I’m doing the washing up, pretending to be normal. Suddenly I notice the dishwater’s gone red. Thought the tomatoes had gotten out of hand—turns out, I’d stabbed myself in the hand. Didn’t feel a thing. Just stood there wondering if I’d invented blood-flavoured Fairy Liquid. That was just the start. Since then, I’ve had more accidents than a drunk toddler on roller skates. Broke both shoulders falling over. Multiple scars, most of them self-inflicted through sheer bloody-mindedness. Fell off a ladder, got back on it, fell off again. You’d think at some point I’d learn. But no—this is Britain. We don’t quit, we just keep making the same mistakes with added sarcasm. So now, I’ve accepted that my life is part soap opera, part public safety announcement. My body's turned into a rogue machine, and my brain’s mostly fog and loud noises. I don’t fear death—it’s not exactly hiding. Shows up every morning, waving from the corner like an overly familiar neighbour. And still, I sit here. Watching the rain, listening to the sheep, absorbing the relentless mediocrity of everything. It’s not tragic, it’s not heroic—it’s just... Tuesday. Sucks to be me? Oh, absolutely. But hey—if you can’t laugh at your own spectacular misfortune, what’s the point?

    looking to buy a second hand q100 wheelcair or similar in the devon cornwall area sick@mylivinghell.co.uk

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