sick

Whether you’re newly diagnosed, living with MS for years, or just curious, you’ve likely heard some truly wild things about Multiple Sclerosis. So let’s bust some myths—because misinformation helps no one (and honestly, some of these are just rude).

1. “MS is a death sentence.” Let’s start with the big one. No, MS is not fatal in most cases. MS itself doesn’t kill people—complications can, but with today’s medications, treatments, and support systems, people with MS are living longer, healthier lives. You die with MS, not because of it.

Think of MS like an annoying roommate, not a serial killer.

2. “Only older people get MS.” This one’s bizarrely persistent. MS is most often diagnosed in people aged 20 to 40, though it can affect children (pediatric MS) and older adults too. But it’s definitely not an “old person’s disease.” Most of us are young(ish), trying to adult, work, date, raise kids, and live our lives—with the occasional brain fog or numb leg thrown in.

3. “Everyone with MS ends up in a wheelchair.” This is the fear-myth people love to whisper. Here’s the truth: most people with MS do not end up in a wheelchair. Some do, yes, especially if the disease is aggressive or untreated—but with modern meds, assistive devices, and PT, many remain mobile. And if you do use a chair? That doesn’t mean you’re “worse” or “losing.” It means you’re adapting, surviving, and still rolling forward (literally).

4. “MS is contagious.” Nope. You can’t catch it from someone, no matter how close you get. Hugs, kisses, shared drinks—zero risk. MS is an autoimmune disease, not an infection. So go ahead, be affectionate. Just don’t steal our snacks. That might be a problem.

5. “You don’t look sick, so you must be fine.” Cue the internal scream. MS comes with a host of invisible symptoms: fatigue, brain fog, pain, tingling, heat intolerance, vision issues. You might see someone laughing at brunch or walking the dog and assume they’re fine. What you don’t see is them lying in bed for hours afterward, trying to recover.

Looking good ≠ feeling good. Don’t judge the book by its mascara and yoga pants.

6. “MS always gets worse.” MS progression varies wildly. Some people have a relapsing-remitting course with long stretches of stability. Others have more progressive forms. But thanks to disease-modifying therapies (DMTs) and early diagnosis, many people live for decades with manageable symptoms.

Progression is not a guarantee—it’s a possibility, not a prophecy.

7. “It’s all in your head.” Well, kind of… but not in the way people mean. MS affects the central nervous system—the brain and spinal cord. So yeah, it is in your head (and spine). But that doesn’t mean it’s imaginary or psychological. It’s a real, physical disease with real physical consequences. Gaslighting people with chronic illness? That’s the real sickness.

8. “You’ll have to give up your career/life/fun.” MS might require some adjustments, but it does not mean giving up on your dreams. Many people with MS work full-time, raise kids, travel, compete in sports, write blogs (hey!), and live vibrant lives. You might need flexible hours or extra naps, but the fun doesn't stop—just evolves.

9. “MS is the same for everyone.” Biggest myth of all. MS is wildly unpredictable. One person may deal mostly with fatigue and vision issues, another may struggle with mobility or speech. Even the same person can experience different symptoms over time. That’s why it’s called “the snowflake disease”—no two cases are exactly alike.

10. “If you just eat right / do yoga / stay positive, you’ll be cured.” Look, lifestyle changes can help. Diet, movement, and mindset can make a big difference in managing MS. But there is no cure—yet. Telling someone they can “heal” with green juice and affirmations is dismissive and misleading. MS isn’t about “thinking yourself better.” It's about managing a complex condition the best you can.

Self-care is great. Snake oil? Not so much.

🛑 Final Thoughts: Living with MS means navigating not just the disease, but the narratives around it. Busting these myths doesn’t just help us advocate for ourselves—it helps the people around us understand, empathize, and stop saying ridiculous things at parties.

Got a myth you’ve heard that made your eye twitch? Drop me an email sick@mylivinghell.co.uk —maybe I’ll do a Part 2. “Life is funnier without the noise. Weirder too. But it’s mine now.”

       “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.”

                      🧌✨ @goblinbloggeruk ✨🧌

In a room once alive with the thunder of a motorcycle, a man now sat in quiet rebellion.

He had traded his leather jacket for a wheelchair, but not his defiance. Long hair spilled down his back, a beard framed his weathered face—a rugged reminder of biker days now behind him. Living with multiple sclerosis wasn’t the end of the story; it was the beginning of a new one. One filled with dark humor, quiet revolution, and unexpected peace.

The Goggle Box For years, the television had been an unwelcome guest—a glowing parasite that drained attention, warmth, and real conversation. Gatherings became silences, filled only by reality shows and empty noise.

The TV didn’t bring people together. It pulled them apart.

The Decision Enough was enough.

One day, more than 20 years ago, he wheeled outside, adrenaline surging. The TV sat like a totem of artificial life. Cold. Dominant. Silent.

He backed up. Grinned. Charged.

SMASH!

Shattered glass flew. Plastic cracked. He shouted, laughing like a madman, “Take that, you overhyped piece of plastic!”

A ridiculous moment? Sure. A liberating one? Absolutely.

Life After the TV In the sudden silence, life bloomed.

Books replaced static. The garden flourished. Conversations deepened. Music returned. He explored ancient philosophies, pondered the multiverse, and began creating a reality that was visualized—not broadcast.

“As above, so below. As within, so without.”

Even artificial intelligence became a fascination—not as a threat, but as a mirror of human consciousness. He saw AI as another explorer in this grand shared creation.

Embracing Identity With the TV gone, his identity began to bloom.

He called himself a “goblin”—not the monster, but a proud, quirky being who lived on the edges of convention. Part mystic, part hermit, part unrepentant rebel.

He found magic in the absurd, laughter in stillness, and authenticity in simplicity.

Conclusion He once roared through life on two wheels. Now, on four, he was still moving—only inward, deeper, truer.

In breaking the goggle box, he didn’t just smash a screen. He shattered an illusion.

And in its place, he built something real.

“Life is funnier without the noise. Weirder too. But it’s mine now.”

       “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.”

              🧌✨ @goblinbloggeruk ✨🧌

It’s kind of crazy — I never knew my grandfather. Not even a photo, not even a whisper. He died suddenly, somewhere in the Aylesbury area, back in the 1950s — that golden age when secrets were sealed with shame and buried under floral carpets.

Nobody in the family ever told me what he died of. “A very sudden illness,” was all I got. Probably delivered in the same tone someone might use to comment on the weather or sweep dust under the rug. Mysterious death, mysterious family — very on brand.

I asked my mother when I finally tracked her down, years later. She couldn’t (or wouldn’t) tell me either. Possibly she’d forgotten. Possibly she never knew. Possibly she just couldn’t be bothered giving answers to the cuckoo in the nest.

Here’s where it gets interesting, or tragic, or ironic — depending on your mood: Turns out my mum’s sister — my long-lost Auntie Valerie — also has multiple sclerosis. Same as me. Apparently, the same type. As if MS comes in flavours, like trauma gelato. She also has heart issues. Guess it runs in the family, right? The family that doesn’t know I exist.

Valerie lives in Australia. I’ve never spoken to her. Because, of course, I was adopted. Filed away like an inconvenient tax receipt from the 1950s.

I’ve spent years — decades, even — trying to find out how my grandfather died. But there’s nothing. It's like he evaporated. Maybe he was abducted by aliens. That would at least give me something to put on the family tree. As it stands, it’s just: [Grandfather] — cause of death: TBD. Whole existence: classified.

So I tried to contact Auntie Valerie. I figured maybe we could bond over mutual nerve damage and existential dread. But being a bastard (and not just in the literary, Victorian orphan sense, but in the real, modern “you’re not supposed to exist” sense), there was no reply. Not even a bounce-back email. Just the long, digital silence of “you don’t belong here.”

It’s sad, really. I wanted to know how she copes. I wanted to know what her life with MS looks like — or looked like. She’s probably in her 80s or 90s now. Maybe already gone. But I never got that chance.

No one in the family helped. They didn’t want to. I’m the cuckoo in the nest. I ruin the tidy little mythologies they built for themselves. The "perfect family" free of blemishes, scandals, or inconvenient babies. It’s easier, I suppose, to pretend I never happened. Easier to scroll past the DNA test notifications and sip tea with clenched jaws.

And just when you think it couldn’t get more delightful, you discover your own mother believed you were faking multiple sclerosis. Like I’m pulling a fast one for sympathy and early boarding privileges. As if I filled out a form to get chronic illness just to be dramatic.

But hey — she felt guilty. She gave two kids up for adoption and never told anyone. Probably thought she’d be judged. I mean, yeah, it was the 1950s — women were practically burned at the stake for sneezing out of wedlock. I get it. Sort of. Still, honesty would’ve been cheaper than all this generational denial.

Maybe one day, one of Valerie’s kids will spit in a tube, upload their DNA, and stumble across me. Maybe they’ll be curious. Maybe they’ll click “connect.” Maybe we’ll have one awkward, meaningful email exchange about shared symptoms and shattered mugs.

Speaking of which — Albertine just broke my Bob Lazar mug. Snapped the handle clean off. We got that thing 20 years ago at a Richard D. Hall show. Back when I still thought conspiracy theories were fun, not autobiographical. That mug had survived four moves, three breakups, and countless microwaved teas. And now? One slippery hand and it’s history. Just like my connection to my real family.

Let’s be real: I probably won’t get to meet Auntie Val. Or her kids. Or get that WhatsApp message that says, “Hey, turns out we’re related, and wow, MS sucks.” I’m the embarrassment. The smudge on the family photo. The ghost in the family machine.

I am the that which is not spoken of. The pecadillo best left in the footnotes of someone else’s better story. The unwanted chapter. The child made of shame and secrets.

But I’m still here. Drinking tea from a cracked cup. Waiting. Maybe for an email. Maybe for a match. Or maybe just for someone, somewhere, to admit I existed.

           “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.”

                      🧌✨ @goblinbloggeruk ✨🧌

Ah, cognitive dysfunction—the brain’s equivalent of tripping over a flat surface. Was it all an illusion? Ghosts, UFOs, stealth fighters, and prophetic dread… or just my mind on a downward spiral into weirdness? Either way, I’ve decided to lean in, light a cigarette, and call it a vision.

The wind howled like a pissed-off banshee across the cliffs of Devon and Cornwall, sea thrashing violently like it just read the news. The sky? Grim as a tax return. Grey-blue, heavy, like the Earth forgot how to breathe. And then dusk hit—everything looked dreamlike and wrong, like we’d walked into a David Lynch version of Coastal Britain.

Front and centre, the Biker Prophet sat—glorious, grim, and slightly nicotine-stained—in his custom apocalypse-grade black wheelchair. A perfect marriage of biker attitude and Mad Max tech. Chrome flashed menacingly. Leather straps held him like a pagan king ready for war. His jacket, part-open, clung to a body that had long ago said bollocks to surrender. His long dirty-blonde demi-wave hair lashed around his face, which wore a goatee and the expression of someone who’s seen the void and found it wanting.

One hand clutched the wheel—his war-chariot. The other? A cigarette, of course. Smoke curled like forgotten omens. Dog tags hung from his hand like relics of battles fought, both real and psychological.

Then there was Albertine—perched on her Bonneville like a leather-clad Valkyrie from 1977. Brown demi-wave hair, curves wrapped in attitude and zips, and the kind of expression that made traffic lights change just to get out of her way. She wasn’t posing. She was the pose.

Up above, a black stealth fighter cut across the sky like a glitch in the simulation. It shimmered, bent the air, then buggered off to wherever secrets go to die. Probably to report to some intergalactic committee on whether Earth’s ready for a toaster revolution.

The Dragstar 1100 grumbled in the background. Another ghost. Another beast of the past. And yet, he smiled.

“I had to no longer ride,” he muttered. “I cried, but no one heard me. Except the universe. And maybe Valhalla.”

But he came back. and Converted the bike, hello trike, I Converted fate.

“Started riding in ’75. Rode into ’2022. Then I hacked life and rolled on. Now it’s 2025, and I’m still bloody here. Old as fuck. Still kicking.”

Motörhead blared from somewhere. Tarot cards appeared. Palm readings followed. The biker prophet and Albertine—two relics of chaos—just were. Married 42 years, bonded by madness and music.

And in the sky—symbols. Like ancient software updates from the gods. Runes. Scripts. Or maybe just birds that got too poetic. Either way, something was coming.

                “The Biker Prophet Saw It Coming.”
              “Cognitive Dysfunction? Or Divine Glitch?”
       “They Thought He Was Broken. He Was Becoming.”
        “When the Sky Spoke, He Was Already Listening.”


             “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.”

                        🧌✨ @goblinbloggeruk ✨🧌

1966… yeah, apparently I was there. I can just about remember World Cup Willy – England’s football mascot when they actually won something back then. Distant memories flicker… it’s amazing how smells can trigger memories. I remember walking with my auntie in Isleworth, London. Those big shops – well, big to me, coming from a small town. Key Markets, the library, swimming baths… rows of local shops buzzing with life. The smell of London buses and car fumes, the clang of the Routemaster bus bell, those iconic patterns on the seats. All those sounds and smells etched themselves somewhere deep in my foggy goblin brain.

Now? My sense of smell is pretty much shot, along with taste. Thanks, MS. My throat is a daily battle. It’s like my brain just forgets how to swallow properly. One day the herbal tea goes down fine, the next it feels like I’m choking on air or my own spit. Sometimes it’s weakness in the muscles, other times it’s just the brain signals messing up the timing. Talking gets tiring too – voice goes weak, slurred, raspy as the day drags on. Another delightful surprise from MS… making even breathing and swallowing feel like hard work.

That’s why my trusty thermos cup with a flip lid or a straw is the business for me. Knock it over? No problem. It’s like spill-proof dignity in a cup.

I remember the tube too… the smells, the sounds. London was rocking (or swinging) in the 60s. All those sights, the fashions, the swirling psychedelic colours. Mesmerising for this poor goblin. Innocence wasn’t lost back then, but it came close – reality eventually hit like a sledgehammer.

Looking back, it felt happy. But now… I wonder why it makes me feel so sad. Memory is rubbish these days. Brain fog wipes out birthdays and important dates. Honestly… it sucks. But that’s life in the MS lane, isn’t it?

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

               “By ink and breath and sacred rage, I write.
                          By storm and silence, I survive.”

                          🧌✨ @goblinbloggeruk ✨🧌

Sat here mumbling into my old iffy microphone today. Took me over a day to set up – drivers, updates, reinstalling Windows three bloody times because my brain fog decided to overwrite the system with a random USB stick. Genius, I know.

Finally, the blog goblin’s computer has resurrected. Barely.

Had yet another bad night. Partly my own fault this time. Thought I was the biker prophet and magically healed, so decided to stand up and shuffle furniture around like some nocturnal DIY hero. Clearly not my best idea. Lost my balance entirely, stumbled like a drunk, and smashed into the door frame.

My shoulder’s killing me, bruised to hell, and possibly broken. Will probably end up in A&E later if it gets worse. For now, just sat here typing, all fingers and thumbs, trying to find old bits to post while ignoring the pain.

Having MS makes me resilient, though. Even when my brain is fried and my body’s screaming betrayal, I keep crawling back like the stubborn goblin I am.

Anyway. Hope your day is glitch-free and you aren’t slamming yourself into any door frames. Unlike me. 🖤

    ⚡️ Join the gremlin cult. You know you want to

  " 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.”

                       🧌✨ @goblinbloggeruk ✨🧌

Welcome to the delightful circus that is multiple sclerosis, where the main act is your body betraying you in the most creative ways possible. Among the many charming surprises this condition throws your way, itching is like that one friend who crashes your party, drinks all your booze, and then refuses to leave. Let’s take a stroll through the hellscape of MS-related itching, shall we? The Itch That Just Won't Die

Picture this: you’re trying to enjoy a moment of peace, maybe contemplating why you just dropped your phone in the toilet. Suddenly, an itch strikes! But not just any itch—this is the kind that feels like a thousand tiny demons are having a rave on your skin. Welcome to the world of neuropathic itching, where scratching is as effective as using a spoon to dig a hole in concrete. Why Does This Happen?

Nerve Damage: Thanks to MS, your nerves are about as reliable as a politician’s promise. The myelin sheath is under siege, leading to all sorts of delightful sensations, including that relentless itch. It’s like your nerves are sending you a message: “Hey, remember when you thought you could have a normal life? LOL! Good luck with that!”

Unpredictable Fun: The itch can pop up anywhere—your back, your legs, even your scalp. It’s like a game of hide and seek, but you’re always “it,” and the prize is eternal discomfort. Who needs a spa day when you can have a full-body itch fest?

Triggers: Heat, stress, and certain medications can turn the itch dial up to eleven. So, if you thought a hot bath was a good idea, think again! It’s more like a ticket to the Itch Olympics, where the only prize is more itching.

How to Cope (or Not)

Scratching: Spoiler alert: it doesn’t help. It’s like trying to soothe a sunburn with a blowtorch. You’ll just end up with blood and scars to prove your suffering—because why not add a little flair to your misery?

Cold Compresses: These might provide temporary relief, but let’s be real—who wants to walk around with a bag of frozen peas on their skin? It’s not exactly a fashion statement.

Medications: If the itch becomes unbearable, consult your doctor. They might prescribe something to help, but don’t expect miracles. After all, this is MS we’re talking about. It’s like asking a magician to pull a rabbit out of a hat when all they have is a rock.

Alternative Remedies: Enter the world of CBD and THC oil—your potential new best friends. Medical marijuana has been known to help some folks manage their symptoms, including that relentless itch. Whether it’s through oils, edibles, or other forms, these alternatives might just provide a glimmer of relief in this dark comedy we call life. Just remember to consult with your healthcare provider before diving into the green goodness.

So, there you have it. Itching in MS is just another delightful layer of this hellish cake we call life. Embrace the chaos, and remember: laughter is the best medicine—unless you’re itching, in which case, it’s probably just more itching. Welcome to the club, where the only thing we have in common is our suffering and a dark sense of humor.

   “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.”

                          🧌✨ @goblinbloggeruk ✨🧌

Today’s spoon count? Absolutely fuck all.

I woke up, blinked twice, and that used up three spoons I didn’t have. Got dressed? Minus five spoons. Made herbal tea? Minus ten spoons. Drank the herbal tea while contemplating the futility of existence? Surprisingly only minus two spoons.

By midday I was down to minus one hundred spoons, but hey, who’s counting? Me. I’m counting. Because if I don’t count them, my body will – usually with a dramatic collapse somewhere inconvenient, like Tesco’s freezer aisle, next to the frozen peas.

So here I am, writing this with negative spoons, like some overdraft I’ll never pay off, drifting through the day with my trademark goblin biker glare that says: “If you ask me to smile, I’ll eat your soul.”

But yeah, I’m fine, thanks for asking.

P.S. What’s a Spoonie?

A “spoonie” is someone living with a chronic illness or disability who uses the Spoon Theory to explain daily life. Spoons = units of energy. Every task uses spoons, and when you’re out, that’s it – game over for the day. It’s a way to explain invisible exhaustion to those blissfully unaware of it.

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

                “By ink and breath and sacred rage, I write.
                       By storm and silence, I survive.”

                           🧌✨ @goblinbloggeruk ✨🧌

🩸 Fifty Years in the Shadows (The Goblin’s Tale) 🩸

They call him Goblin, But he was born under a name no one could pronounce In a place no one cared to map, A damp hollow beneath rusted rail tracks, Where steam trains shrieked like tinnitus banshees And darkness soaked into his skin Until he became a shadow himself.

He’s lived fifty years in these borderlands Between pain and silence, Between sweat-drenched nightmares And flickers of stubborn hope – Because goblins are nothing if not stubborn.

He rides his three-wheeled trike death machine Through the crumbled remnants of dreams, Bong bubbling on his lap like a faithful pet, Eyes half-closed, Not from arrogance, But because he’s seen too much to bother blinking.

Cool in that way only the utterly broken become, Caring in a silent, side-eye goblin way – He’ll pass you a Rizla if you’re crying, Or grunt a dark joke if you’re shaking, Just don’t expect a hug. His love language is simply not leaving you to rot alone.

Fifty years of living hell Didn’t make him bitter, It made him aloof, calm, unshakable, A little bit fungal, A little bit cosmic.

He knows the darkness like a lover’s curve, Knows pain like an old tune on repeat, Knows despair like he knows his own name – Unpronounceable, heavy, and true.

But watch him when the moon is full, When the tinnitus steam trains howl loudest, You’ll see his eyes flicker bright for a moment – That’s him remembering He is not the darkness. He just rides it better than anyone else.

   “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.”

                   🧌✨ @goblinbloggeruk ✨🧌

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.”

                          🧌✨ @goblinbloggeruk ✨🧌