Disability

Ah, Universal Basic Income UBI. The shiny carrot dangled by politicians and dreamers alike. A magic monthly payout, no questions asked, no forms to fill, just cold, hard cash to fix all the broken bits of your life.

Sounds perfect, right?

If you’re under 30, in perfect health, and don’t look like a grizzled biker-warlock with MS parked in a wheelchair maybe. For the rest of us? It’s about as “universal” as a secret society handshake.

I’m 66, have MS, and spend most days stuck in a wheelchair. I’ve paid my dues in blood, sweat, and taxes. The NHS and DWP have taken their cut sometimes twice through endless paperwork, suspicious looks, and a roulette wheel of meds that may or may not kill me softly.

UBI? A lovely idea until it’s a letter in the post telling me I don’t qualify. Because “universal” means universal if you fit the damn model, not if you’ve got a beard, a leather cut, and a wheelchair.

My carers? They’re battling their own health while carrying me through this Kafkaesque nightmare. The system forgets we exist, then wonders why it’s failing.

Lately, I trust AI more than the DWP. At least the machine of doom doesn’t sigh or gaslight me when I ask for my meds. It malfunctions less often and never plays favorites.

UBI might be the future, but for me? It’s another cruel joke, hanging like a flickering neon sign in a fog of broken promises.

Call me when the cheque lands.

Mr Dark

                      “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  -  sick@mylivinghell.co.uk

So Monday morning rolls in like a drunk ghost with a hangover. The plan was simple: limp the van to the garage, smile through the quote, and pretend life wasn’t an endless endurance test. Instead? I woke up feeling like absolute hell.

The tinnitus was howling in my right ear why the right? No bloody idea. Maybe it's trying to whisper cosmic truths from the land of the dying neurons. Or maybe my brain’s just bored and wants to recreate a factory floor soundtrack.

Then came the message. One of my dad’s friends. My father—aged 90, tough old bastard that he is—has had another fall. A serious one. Condition? Not good. I felt it. No, not in some woo-woo psychic TikTok way. Just that grim knowing. He’s nearing the end of his road. And I hate it.

Here’s the twist most folk don’t know: I’ve only known him since 1999. That’s when I tracked him down in New Zealand, after decades of being the state’s little secret. Turns out I had siblings. More ghosts in the family cupboard. We Skyped until Skype did what all modern tech does it stopped working and caused chaos. He struggled with computers (who doesn’t at 90?), so we switched to WhatsApp.

We actually spoke last week he’d just had another heart attack and a previous fall. Still sharp. Still Dad. But I sensed the edge then. The slipping. And now it’s here.

The Origin Story? Grim as Fuck. I was adopted at six weeks old, plucked from a “mother and baby unit” and handed to the new parents from hell. The sort of couple that make Dickens’ villains look like amateur dramatics. If you've read this blog, you’ve seen bits and pieces of that trauma circus already.

And today? Today the past and present just smashed together. The man who gave me half my DNA is slipping away, and I’m sitting here sweating like a water tap on steroids, tinnitus screaming, hugging a pillow like a lost child, and Ozzy’s voice clawing its way through the noise. When it gets worse? It’s Motörhead time.

I just want to ride hard again. To feel the wind rip through my hair. But instead, I’m stuck here in this twisted freakshow of cognition, fatigue, grief, and biological inheritance.

Still, what can you do? Welcome to my world of weirdness. Population: me, and maybe a couple of dead kings.

🚐 For Albertine She’s the one who drives when my body won’t, the one who holds the wheel when the road blurs, and the one who doesn’t flinch when the darkness hits. Without her, I wouldn’t get far not to the garage, not through the grief, not through the noise. Albertine: my co-pilot through this living hell. And the reason I’m still in the fight. Always.

                     “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   sick@mylivinghell.co.uk

Those were the days roaring down the A40 towards London town, loud enough to make the locals cover their ears. Hair and beard whipping in the wind like I was some kind of mad Viking god, my open-face helmet barely hanging on as speed lifted my lid like a pissed off gull.

Then another bike, coming towards me brother nod, that silent salute of chaos. I smile wryly because I’m young, alive, and damn proud. We carve into the night, the city lights dimming behind us, the old bike chugging along like a beast reluctantly waking from a hangover.

My brothers riding beside me, shadows at my back, all of us swallowed by the roar, the stink, the madness. Food stalls on trollies, the sickly sweet stench of exhaust fumes, oil, sweat—like perfume for the damned and the wild.

I was proud in my Originals, leather and cut stitched tight like armor. A proud bastard, alright. Yeah, we got into a few punch-ups got jumped, got wrapped in chains, got battered enough to know pain well. But after every fight, I bought the bastard a drink. Because testosterone fueled rage somehow always ended in laughter and stupidity.

That music, that scene you had to be there to believe it. Pure madness. Brotherhood not just a word, but a life raft in the storm.

Now? Most of those wild bastards are gone, forgotten in the void, ghosts in the wind. And here I am, caught between worlds, still chasing the question: What the hell was it all about?

I’ve been down the rabbit hole and seen the shit no one wanted to believe. Weather engineering, conspiracies, the things I shouted into the void only to be called mad, eccentric, a tin-foil hat wearing nutcase.

Turns out surprise surprise I was right. And silence was the price I paid. Shut down, censored, my eight-year radio career ended cold because the “safe” didn’t want to hear the truth.

Hence this blog. My refuge. My last roar.

Still, I’d rather be riding into the wind with Albertine along those endless Westcountry roads—wild, free, and unapologetically alive—than stuck in any safe place pretending to be sane.

                         “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   sick@mylivinghell.co.uk

Today I think I may evaporate.

Not metaphorically, either I mean literally melt into a glistening puddle on the floor like the wicked witch of Walthamstow. The heat is biblical, the air thick with resentment, and if this goes on much longer, someone’s going to find a beard and a pair of shades just floating where a warlock once sat.

It’s too hot for coherent thoughts, so obviously the brain’s doing backflips and the MS has decided to turn the “cognitive dysfunction” dial up to 11. Words don’t just escape me they actively mock me. I sit here smiling, half-lucid, fully furious, fully me. Because no matter what the system, the diagnosis, or the temperature says I know I’ve got more to give.

They wrote me off just before my state pension, bless them. Nice timing. But I’m still here, inconveniently alive and louder than ever. The nerves in my gut are throwing a tantrum, my stress levels are spiking like a dodgy ECG, and to top it off the last of my savings waved me goodbye this morning. Cheers, love. Don’t call.

But here’s the kicker: I’m still smiling. Not because I’m some chipper TikTok disability guru with fake eyelashes and a ring light, but because I’m free. I don’t belong to any bloody wing of politics. Left, right, centre? You’re all still part of the same bird, love and it’s got mange. The world they squawk about isn’t mine. Mine’s quieter, darker, more honest. My world is real. Full of pain, insight, weirdness, and the kind of laughter that sounds a bit like crying.

You see, I’m part of something else. The One. The Everything. The Divine Love. That throb in your chest when you’re alone and honest that’s where I live. I wish peace and healing to every poor soul who stumbles across this digital haunted house I call a blog. Because no matter where we are, what we’re facing, we can change. It’s inside us all. Just buried under decades of fear, trauma, and daytime television.

We’re at a crossroads now, all of us. Some of us limping, some of us rolling, some of us dragged along by sheer bloody spite. But destiny’s cracking her knuckles. Evolution’s knocking at the door, and if you’re still wearing your silly little face mask of denial—best take it off now. Truth stinks, and it’s getting in anyway.

I’m not afraid of death. I’ve danced with it enough times to know its rhythm. I’ve looked into its eyes and said, “Not today, mate. I’ve got a blog post to write.” And as I sit here dripping, broke, buzzing on antihistamines and maybe the ghost of Mary Jane, I realise I’m on another plane entirely. One not many choose to visit. It’s dark, yes but in that darkness, you’ll find the light. The real light. The kind that doesn’t need electricity or permission.

So yeah. It’s hot. The world’s on fire. I’ve got no money, and half my neurons have buggered off on holiday. But I’ve never been more alive.

To all of you peace, healing, divine truth. Go find your demon and kiss it on the mouth. That’s how we win.

Mr Warlock Dark

                       “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 - sick@mylivinghell.co.uk

If you could see MS, you wouldn’t call me “brave.” You’d run. You’d grab your oat milk latte, clutch your yoga mat, and bolt like the floor just cracked open.

MS isn’t just some misunderstood condition that makes you “a bit tired.” It’s a chronic possession. A neurological horror that turns your own body into a traitor. If it had a face, it’d be wearing your skin and whispering, “Not today, legs.”

Here’s what Part 2 looks like: Cognitive fog so thick you forget what day it is, mid-sentence. Mid-thought. Mid-life.

Fatigue so biblical you feel like you’ve been exorcised, worked over, and nailed to a wheel. And then someone asks why you haven’t answered your emails.

Spasticity that locks your limbs in a rigor mortis cosplay while you smile politely, because God forbid you scream in Tesco.

Pain like a bag of nails under the skin. Invisible, so people assume it’s “just anxiety.” No, Mildred, it’s neuropathy. My nervous system is staging a revolution.

Bowels and bladders that treat you like a hostage. Every public outing is a tactical operation. Every seat, every loo, every escape plan scouted, rehearsed, prayed for.

But the worst part? It’s not the symptoms. It’s the looks. It’s the passive-aggressive “You don’t look sick.” It’s the fake concern, the pity wrapped in judgment. It’s the gaslighting of the disabled doctors, relatives, strangers. Everyone’s an expert until you ask them to live a week in your ruined skin.

I have MS. That means I live in a 24/7 haunted house, except the ghost is me. Every step, every breath, every smile—a bloody-minded act of rebellion.

Why I Wrote Part 2 Because part one was polite. Part one was nice. This is truth with its teeth bared.

People still don’t get it. They think I’m just “a bit forgetful.”

They still ask why I need a chair.

They still assume I’m okay because I can post something funny on the Blog or X.

So here’s the dark: I am a battlefield. And I’m still here. Which makes me terrifying.

              “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   sick@mylivinghell.co.uk

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 ✨🧌

🕯️ 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.”

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.”

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.”

🧠 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.”