Multiple sclerosis  is My Living Hell

DisabilityRealTalk

All posts tagged DisabilityRealTalk by Multiple sclerosis is My Living Hell
  • Posted on

    Well then. Off out we go. A grand expedition. An odyssey, no less. All the way to the garage—yes, that mystical temple of greasy doom—to get the old van MOT’d. It’s not just a vehicle, it’s a relic. Twenty years of loyal service. Mostly. Bit of rust. Bit of creak. Bit of “please God let it start.” But it’s still here. Like me. Hanging on out of pure spite.

    Someone once said, “They don’t build them like that anymore.” And thank Christ for that. If cars were still made like they were in the 1970s, we’d all be broken down on the M1 watching steam pour out the bonnet, while some bloke in flares offered to tow you with his Cortina estate. Those cars were about as reliable as a wheelchair battery in a thunderstorm.

    I remember when the UK was littered with RAC and AA phone boxes—those little yellow lifelines dotted along motorways. They’ve vanished now, like empathy, sanity, and the NHS. Rare as hens’ teeth, or an honest politician.

    Anyway, I didn’t sleep last night. Not a wink. My bladder decided it was time to act out a scene from Backdraft. I lay there, staring into the ceiling void, pissing every twenty minutes like a possessed lawn sprinkler. So I started thinking—because what else do you do at 3am when you're soaked in fatigue and futility?

    I thought about all the crap cars I’ve owned. So many. Too many. If there were a museum for motoring misery, I’d be a patron saint. Rattling doors, broken electrics, heaters that blew cold air in summer and hot air in hell. The British car industry, ladies and gentlemen.

    But let’s rewind. Before the wheelchair, before the rust bucket van—I was a biker. A proper one. Big beard. Long hair. Leather jacket that smelled of oil, rain, and barely controlled aggression. Speed. Freedom. The road was mine.

    That all changed the day I hit a loose drain cover on a damp road. Back end of the bike went out from under me. Hit the tarmac like a sack of angry potatoes. And I got up. Physically. But something in me didn’t. Something silent and final shifted. I realised, I can’t ride like this anymore.

    But I wasn’t ready to give it up. Not then. So I bought another bike. Custom triked it. Spent a fortune on it—my last defiant middle finger to the creeping MS. I rode that beast as long as I physically could. Until one day, even mounting it was like scaling Everest. Body said, “You’re done, mate.” And I knew it was right.

    I sold the trike two years ago. That was the last real ride. The final roar of the engine before the silence set in. Felt like watching a part of myself being towed away behind someone else’s smile.

    And now? Now I’m being slowly retired by force. Out of work. Out of energy. Out of options. Soon to be ejected into the bureaucratic black hole of the state pension. My business—what’s left of it—will die the day I clock off. I can feel it gasping already. I went to uni at 40. Built something. Pushed hard because I knew I had a window. Now the window’s shut and the room is on fire.

    Truth is—I haven’t been properly “capable” in years. Five, easily. These days I just sit, staring into the abyss, waiting to see if anything interesting crawls out. So far: nada. But I’m still here. Just about.

    Still, I did things. Things I never thought I could. That’s the weird joke of it all. Even while your body’s disintegrating, there are moments—real moments—where you do something good. Where you matter. But that only happens if you’ve got people around you who actually care. No gaslighting. No clipboard psychology. Just real help. The kind that doesn't end with “There’s nothing more we can do.”

    Oh yes. Been told that more times than I can count. It’s medical code for “You’re a problem we can’t fix so piss off quietly.” They said it like they were reading the weather. I left those rooms devastated. Angry. Broken. But not done. I still had enough fight to ride out of there burning with fury.

    Then I remembered my students. I used to teach adults with learning disabilities. You know, the people society would rather not look at. The ones who get shoved into corners, behind policies and forgotten services. And let me tell you—they were the most genuine, honest, loving people I’ve ever known. No hate. Just humanity. And we broke them. We broke them too.

    And now? Now I’m gearing up for the next tiny battle: getting dressed and into the van. It’ll take hours. Every task is an assault course. But I’ll do it.

    Because I always fucking do.

                          “The views in this post are based on my personal    
                           experience. I do not intend harm, only honesty.”   
    
                           “By ink and breath and sacred rage, I write.
                                       By storm and silence, I survive.”
    

    enter image description here

                            @goblinbloggeruk - sick@mylivinghell.co.uk
    
  • 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

    It’s been the weirdest of weeks. Not much sleep. But I’m still here.

    My MS symptoms are calming down to a level I can handle. That’s a victory, right there. Because every breath I take is another I refused to surrender.

    I drown out the tinnitus with music. My head sounds like a goblin with a weed wacker, or a spluttering two-stroke engine – like an old Yamaha FS1E, coughing and whining its fizzy rebellion. Call her Fizzy Girl, Wifey, Albertine… call her whatever you want. The pain stays the same.

    Looking at this screen burns. My voice is croaky. Words come slow. My tongue is numb again, lost in a mouthful of phantom bites and blister burns. That’s life when MS hits your throat, your vagus nerve, your corpus callosum. But I fight it. Every. Damn. Day.

    I’ve had those dark thoughts. I’d be lying if I said I hadn’t. But I never let them win. I write them out. I bleed them onto pages, text pads, digital scraps – foggy memories turned into clarity, darkness turned into light.

    I created this alter ego – The Goblin. It’s addictive, this freedom of expression. I have no mates, no friends in the traditional sense. But I have myself. And I have my family. And that is enough.

    It’s Saturday afternoon. June 6th. Back in the day, Saturday afternoons meant wrestling on BBC2. Mark Rocco. Marty Jones. Fit Finlay. Skull Murphy. Giant Haystacks. Banger Walsh. I met Haystacks once. I was 6ft 4 back then, and he made me feel small. That’s what true presence is.

    I remember mushrooms my dad picked fresh from the field, sizzling in Trex, pitch black underneath – perfect. Simple memories. Real moments. The things that matter.

    So what’s broken this week, you ask? Nothing. My biggest win was reinstalling Windows 11 and getting Kali Linux running again. The rest is just background noise.

    I picked up my crown from the dentist. He had a bike accident. I’m sending him healing energy, like I send to you reading this now.

    Because yes, I know darkness. I live with pain. But I rise. Every. Single. Time.

    Never give up. I haven’t. And I won’t. Neither should you.

             “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

    Letting Windows 11 install itself is like giving the keys to a drunk valet — somehow, it worked out fine. No explosions, no blue screens. Quite the miracle, considering my experiences with Windows Millennium and its rogue’s gallery of dysfunctional predecessors.

    To be fair, Windows 10 and 11 are slick. But the code bloat? Don’t get me started. I miss the lean days of Windows 7 and XP, the glory years before Microsoft decided your machine needed 45 services just to check the weather.

    But I’ve moved on — I’m Linux-bound, baby. Mint on a USB stick. Kali for when I’m feeling dangerous. Both free. Both slick. And everything I need is already there. Open source is the truth. Why pay absurd amounts of money when SourceForge and the depths of the internet provide a smorgasbord of brilliance?

    Now imagine this: Black Sabbath is blaring – Iron Man rattling the walls, the Doobie Brothers soothing the existential dread, and some Bach organ symphonies levelling it all out. Meanwhile, joss sticks waft from the lavatory, and my body decides it’s time for another round with the infamous MS Hug — a vice grip on your ribs, only with the bonus prize of a surprise bowel evacuation.

    Yes, Multiple Sclerosis is the gift that keeps on giving: Pins and needles, numbness, muscle spasms — I’m basically a vibrating sex toy on Mach 10. If it weren’t painful, it’d be hilarious. Actually, it is hilarious, in a cruel cosmic way.

    But hey — it could be worse. Back in the ‘70s, I was 13, smashing pavement with a pneumatic drill during school holidays. Smoking Embassy Gold, Players No.6, or if I was desperate, the glorified paper stub that was No.10. My next-door neighbour Steve (legend and bad influence rolled into one) got me onto Marlboro and joints. Life was motorcycles, tattoos, rock ‘n’ roll, and too many warnings from mothers about dudes like me. Now? The wheels have changed — but the fire's still here. And the stories? They’re just getting started.

               “By ink and breath and sacred rage, I write.
                          By storm and silence, I survive.”
    
    “The views in this post are based on my personal  
        experience. I do not intend harm, only honesty.”  
    

    enter image description here

                    🧌✨twitter or x @goblinbloggeruk ✨🧌
    
  • Posted on

    Well, wasn’t that just delightful. Another evening of bedtime surprises, like a game show where all the prizes are torture devices. Honestly, it was hotter than Satan’s armpit during a heatwave in a sauna. Crawling into bed felt like checking into Hell, room 666, with a complimentary pillow and a welcome spasm.

    I lay there, the Human Spasm Machine™, twitching like I was possessed by a caffeinated poltergeist. My throat? Oh, just casually reenacting a scene from The Exorcist. My tongue joined in too—spasming, shooting out like a party blower at a funeral. Except this party was full of pain and the numb tongue made it all the more festive.

    Then came the lip bite. Oh yes, proper horror film moment. Bit down hard—no pain, of course, just the iron-rich taste of failure. And with the temperature of any drink being a potential lava experience, I just lay there like a damp breadstick marinating in misery, waiting for the THC-CBD oil to take the edge off. Slowly, things downgraded from “murderous seizure rave” to just being Mr. Asshole at an all-you-can-eat buffet of nerve damage.

    Then my bladder piped up. "You need to piss," it said, like some condescending narrator. No catheter in, because clearly I'm not in any state to thread a tube down the Eye of Thunderer (yes, that eye). I tried to sit up—cue electric shocks to the spine like Zeus having a tantrum.

    Next thing I know, I'm just sitting there...and the floodgates open. Like a broken dam of dignity. Full-on urine monsoon. No lifeboat.

    As if that wasn’t enough of a carnival, my head joined in. Pins and needles danced round the crown like a medieval torture crown. Ears ringing with tinnitus so aggressive, it felt like Motörhead doing one last gig in my skull for their number one fan: Fizzy the Sultry Goblin Girl. And she wanted encores.

    And it still goes on, mind you. This isn’t a one-off. It’s not an episode. It’s just a revolving carousel of neurological hell. Sometimes it’s a demon, sometimes just a dickhead. Either way, balance like a drunk on ice. You get used to the absurdity. Sort of.

    So here I am, hugging a pillow like a Victorian maiden with consumption, trying not to slip fully into the existential pit. The kind of void where your mind floats off and never bothers to send a postcard. Because this is life with multiple sclerosis: an unpredictable blend of horror, comedy, and tragedy, written by a drunk playwright who thinks misery is edgy.

    Cheers to another night in paradise.This is life with multiple sclerosis.

    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.”