Multiple sclerosis  is My Living Hell

ms life

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

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for help.

    Woke up yesterday and bit the tip of my tongue like a pro. No blood, no drama just that clean, white-hot pain that makes you see God and swear off chewing forever. Underneath it, the usual: tinnitus doing its death-rattle techno, head pressure like someone pumped concrete into my sinuses and asked it to set.

    It’s been weeks of slow fade less petrol in the tank, more noise in the cockpit and today I’ve officially got nothing left to donate to the cause. The sky’s gone coal black, rain sharpening its knives, thunder warming up. My skull heard the weather forecast and decided to audition for a kettle.

    So yes: I’m retreating to the slug. Curtains drawn. Horizontal. Negotiating a ceasefire with my own nervous system. If I don’t answer, assume I’m busy pretending to be furniture.

    Peace to the good ones. Healing to the stubborn bits. Understanding for anyone fighting a body with a sense of humour. Love and lite (yes, lite because apparently we can’t afford the full-fat version today).

    No medical advice, just field notes from the front line. If you know, you know. If you don’t, count your blessings and bring soup.

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.

    enter image description here

  • Posted on

    So the van passed its MOT. Just.

    And by "passed", I mean it limped through with a laundry list of advisories—most of them variations of:

    “Yeah, this bit’s rusting. And that bit. And that one too. But hey, it's not quite fallen off yet.”

    Basically, it's fine... until it isn't. Nothing “urgent” apparently, just that sort of creeping, crusty decay that matches my general outlook on life. A bit like me really—functional, but hanging together with spite and corrosion.

    The trip down was hellish. Not because of the usual tourist caravan wankers, though they were out in force, streaming down into the soggy bosom of the sometimes-sunny South West. No, the real bastard was the new roads. Smooth, fresh tarmac—and a 30mph limit slapped on it like a cruel joke. You’re crawling along in a perfectly capable machine, stuck behind some Prius doing 27, and then the signs start laughing at you: 20mph through a village with 14 people and 300 plant pots.

    It’s like someone redesigned Britain for the safety of ghosts.

    👨‍🔧 Garage Guy: The MOT Goblin I rolled into the garage and waited in the chair. Didn’t speak much. Not because I’m shy, but because the owner’s a loud-mouthed, self-important bellend who never misses an opportunity to let me know how hilarious he thinks I am.

    “You still alive then, Gandalf?” “Don’t bite me, Dracula.” “What’s it like living in that van full time, mate? Bet it smells of pot noodles and broken dreams.”

    Ha. Ha. Ha.

    He’s been like this for years—one of those blokes who thinks banter is a personality trait, and disabled people are fair game because you can’t chase them down the road. I’ve asked him about the VAT exemption before (the one tiny crumb of benefit I get from this absolute shitshow of a body)—and every time he acts like I’ve just farted in Latin.

    “VAT off, mate? Nah can’t do that. It’s complicated innit.” (Translation: “I can’t be arsed and you make me uncomfortable.”)

    Now, instead of losing it like I used to—because believe me, I used to unleash hell—I just don’t engage. I sit there with my travel mug, staring into space like I’m watching the last embers of civilisation flicker out. And I get Albertine to call him if I need anything. Because I can’t be bothered dealing with people who think they’re doing me a favour by letting me spend my money.

    🛒 Retail Hellscape: Aisles of Pain So it passed. The van. Not my mood.

    We figured we’d do some shopping. Another mistake.

    The car park at this giant multi-national corporate parasite of a supermarket was pure anarchy. Disabled bays? Forget it. Half taken up by BMWs with no badges and drivers who look like they vape Monster Energy. The rest were jammed with people "just nipping in" for an hour.

    Inside the shop, I was instantly overwhelmed by the noise. The lights, the people, the bloody smells. Everything about these places makes me feel like I’m stuck in some post-apocalyptic game show. And I don’t “see” people anymore, not properly. They turn into ants. Skittering, swarming. Trolley-humping meat sacks with Bluetooth earpieces and discount lust in their eyes.

    I wear a look that says:

    “Don’t talk to me. Don’t help me. Don’t fucking exist near me.”

    Which mostly works. Until the food smell hits.

    See, I don’t just dislike food smells. I don’t find them “overwhelming.” No, for me it’s more like this:

    If I smell it, it’s already too late.

    My body goes straight to DEFCON 1. My gut twists like someone’s wringing out a wet rag full of knives. I could be smelling chicken fat or the ghost of some sausage roll that died in 2006—it doesn’t matter. My bowels clock it and decide now is the perfect time for a surprise performance.

    I bolt. Well, roll. Fast.

    Back to the van. Just in time. Slam the door. Flip the lock. Drop into the onboard toilet like it’s a lifeboat and the Titanic is already gone.

    What followed was ten minutes of absolute, full-volume, gut-churning agony.

    Afterward, I slumped next to Albertine, both of us wilting in the heat, fans and air con blasting, van windows wide open like I’d just fumigated the place. I told her:

    “Just another day in my living hell.”

    🎯 Real Talk People don’t get it. The physical pain. The mental gymnastics it takes to get through a day without breaking someone’s nose or bursting into tears. The dignity you trade for the right to go outside.

    So when I say this blog is called My Living Hell—I’m not being edgy. I’m being accurate.

                         “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

    Well, we’re living in a totally insane world – that’s for sure. As an old mate of mine used to say back in the 70s… shout out to Mr Coxal (or however the hell you spell it). Oh yo! That was him as well. Dammit, I’m going off on a tangent again.

    Anyway… today I went into debt. Yeah, had to make a decision. My wheelchair battery finally gave up the ghost. Cost me an eye-watering £400 – and that’s without the VAT. Quite a bitter little pill to swallow for something I rely on just to get from A to B.

    The kicker? This chair’s only about three years old, if that, and already the battery’s decided life isn’t worth living. Guarantee? Worthless. Batteries seem to die whenever they bloody well please. Typical.

    And let’s talk about battery life, shall we?

    They sell you these chairs with a wink and a nod, telling you the battery will last “up to five years if you look after it.” Yeah, right. Reality check: these things die when they bloody well feel like it. Three years in, and mine decides it’s had enough of this mortal coil.

    You do everything right – keep it charged, don’t drain it to death, store it warm, treat it like a newborn kitten – and still, one morning, nothing. It’s like it wakes up and goes, “Nah mate, I’m done. Roll yourself today.”

    And of course, the guarantee never covers the battery, does it? Because batteries are ‘consumables’. Like a pack of biscuits or bog roll. Except this particular consumable costs £400 and without it, your life basically stops. It’s a bitter little taste of the freedom they pretend we have. Freedom to do what, exactly? Sit in one place, powered down, like an abandoned droid in a scrapyard.

    And yes, you can buy a whole new chair for the price of a single battery. The maths of that is so insane it makes my head hurt. It’s like selling you a phone battery for £600 when the phone itself costs £550. Makes perfect sense, doesn’t it? Late-stage capitalism, mate. You couldn’t make this up.

    So I’ve gone crawling to Amazon, tail between my wheels, and what do I see? An entire electric wheelchair for the same price as that single battery. Three-year guarantee included. Makes you wonder, doesn’t it.

    But hey, I can’t sit around waiting for wheelchair services to pull their finger out. So thank you, Amazon… or hey Geoff, how about a discount while you’re at it? Cheers mate.

    Yeah… I’ve gone into severe debt because of this battery. £400 I didn’t have, just to keep moving, just to keep living some kind of life. I know I’ll have to go without something else now. Food, bills, meds – who knows. It makes me fucking angry.

    Angry that existing costs so much. Angry that they sell us broken promises and worthless guarantees. Angry that this system makes basic mobility feel like some luxury we’re not worthy of.

    But I’ll keep rolling. Furious, broke, but rolling. Because giving up isn’t an option. But damn… it shouldn’t have to be like this.

    Welcome to dystopia – sponsored by late-stage capitalism, dodgy guarantees, and batteries with the lifespan of a mayfly.

           “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 ✨🧌