Multiple sclerosis  is My Living Hell

life with MS

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

    Welcome back, voyeurs of misery. You made it through Part 2, didn’t you? Congratulations—here’s your bloody medal and a cup of lukewarm irony. Now buckle up, because Part 3 is where we drop the polite mask, torch the script, and go full abyssal.

    MS, for those playing catch-up, is a twisted carnival ride operated by a drunk god. And in this chapter, the lights are flickering, the wheels are coming off, and I’m still somehow smiling—mostly because I’ve stopped giving a toss.

    What It’s Really Like (No Filter, No Mercy): The “Tired” Myth: I’m not tired. I’m drained of essence. If I were a car, my warning lights would be flashing, my engine seized, and the glovebox would scream when opened. But sure, Carol—tell me how your yoga class wore you out.

    The Mental Torture: Brain fog? Try brain war. I forget what I’m saying while I’m saying it. Conversations are like loading a website on 1998 dial-up: buffering, crashing, restarting with a different topic entirely. And yes, I was a professional psychic once—now I can’t even predict what room I left my dignity in.

    Mobility Is a Masquerade: The 3-wheeled Scooter of Death (may it rest in bits) refuses to climb inclines and has a personal vendetta against smooth motion. Meanwhile, Albertine and I are playing a dystopian version of “Where’s the wheelchair?” with failing batteries, cracked footrests, and a promise of repairs that never comes. Wheelchair services? More like Wheelchair Suggestions. Maybe. Eventually.

    Pain? Oh, you sweet summer child. It’s not “ouch” pain. It’s “screaming into the void while smiling at the postman” pain. Imagine your skin crawling, muscles locking, and bones plotting their exit—all while society expects you to say “fine, thanks” and hold open the bloody lift door.

    Gaslighting 101: Doctors, neighbours, helpful strangers—stop pretending I’m stupid. I’ve been gaslit so hard I should be floating over Victorian London. I'm in a wheelchair, not a vegetative state. You think I’m too sharp, too sarcastic? Good. It means I’ve got just enough brain left to clock your bullshit.

    Albertine – The Backbone of This Broken Bastard While I’m over here playing neurological roulette, she’s the one holding the line. Wiccan biker. Hippy with fangs. Carer. Wife. Lifesaver. She doesn’t suffer fools and she doesn’t sugarcoat the truth. If this blog is the fire, Albertine is the hearth—steady, fierce, and far more dangerous than she looks. You’ve been warned.

    Why Part 3? Because people still don’t get it. Because polite stories don’t shake the system. Because I’m still here, broken and burning and bloody eloquent. And because if you saw what I feel, you’d run.

                                   !!DISCLAIMER !!
    

    This blog shares raw and personal experiences with mental and physical health. Some posts may be triggering. I'm not a professional - just writing my truth. Please don't take this as medical advice.

            “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, it's Wednesday. That sacred midweek slump where you're too far from last weekend to still care, and too close to next weekend to legally give up.

    Today? We ventured out. Yes, out — into the feral wilds of a local market near where we used to live (back when I had fewer diagnoses and more hair).

    Albertine chauffeured me like the dark queen she is, and I stared out the window like a faded Victorian child recovering from consumption. The fields were full of cows, sheep, and idiot drivers who'd traded brain cells for car roof boxes and screaming children.

    And then — boom — the average speed cameras appeared. Those big yellow poles of despair. Sentinels of the apocalypse. Albertine had to dodge more bad drivers than Gandalf dodges Balrogs.

    Gone are the days of jeans, leather jackets, dodgy boots and patchouli-soaked pheromones. Now it’s all people-movers packed tighter than Tory lies, roof racks piled like refugee carts, and dead-eyed dads named Dave.

    We arrived. Market time. Indoor chaos. Got out of Mr Rusty (my noble van) and rolled the wheelchair into the sea of fluorescent lighting, discount socks, and the perfume of stale chips.

    Fat Tony's stall? Glorious. Tony and Paul – sages of the street – held court like two greasy prophets. We talked life, death, and probably cheese graters. I was sipping juice like a royal goblin while Albertine suffered in solemn, saintly silence.

    Then I rolled past the 3D print shop – a futuristic corner of the market that honestly makes NASA look like cavemen with Play-Doh.

    And lo – a crystal stall! Witchy delights. Pagan bits. Pointy shiny things that allegedly absorb vibes (hopefully not my brain fog, but one can dream). Obviously, I bought some. Witchcraft's cheaper than the NHS.

    Then met a biker. Simon. Old school. One of us. Had a proper chat about the 1970s, leather, death, and what’s left of life.

    Brain fog still thick. Cognition feels like someone parked a fog machine inside my skull and left it running. Whole left side’s numb. NHS? Useless. "Come in sir, let's slice you open and shrug!" No thanks. If death is the cure, I’ll pass.

    Spellchecker now malfunctioning. Cognitive warning sirens going off. Too many lunatic motorists today. Seems everyone's running from something, probably themselves.

    Anyway — we survived. Just. Another victory for the broken and the damned. See you next Wednesday.

                                                 !!DISCLAIMER !!
    

    This blog shares raw and personal experiences with mental and physical health. Some posts may be triggering. I'm not a professional - just writing my truth. Please don't take this as medical advice.

                              “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