Multiple sclerosis  is My Living Hell

DisabledAndProud

All posts tagged DisabledAndProud 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 ✨🧌