Multiple sclerosis  is My Living Hell

Spiritual Humanitarian

All posts tagged Spiritual Humanitarian 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.

    So the last few days I’ve been working on fumes, as they say. No spoons left. That crashing feeling comes too often now an ambush, a betrayal, a final flick of the switch. I keep forgetting to hydrate. Bowel department? No poo since Sunday. Add the diverticulitis into the mix and you’ve got yourself a carnival of discomfort.

    I should write a note to myself... but I’d no doubt forget. Tried that already. Phones, alarms, sticky notes, even tying knots. All of it fails. Then ahhh Albertine to the rescue. At least she remembers birthdays—my kids, my grandkids, even mine. That’s how far things have gone. I sigh heavily knowing the inevitable is coming. Sooner or later. I’m sad. Of course I’m sad. But that’s the hand life dealt me.

    MS has driven me fucking mad. It’s pushed me to places I never thought I’d go. It defined me. Then it broke me. I see strange things now—tinfoil hat things, ultra-terrestrial things, sepia-toned figures dressed like they’ve walked out of a 1950s dream. I know I’m eccentric. I know I’m not like the rest. I’m a spiritual humanitarian now. That’s what I am.

    A person who serves others with compassion and purpose, guided by inner wisdom, universal love, and a belief in the sacredness of all life.

    That’s what defines me now. I’ve evolved. But what’s real? The cognitive fog—what I’ve christened "CogFog"—it ruins everything. Makes my head hurt. Warps reality. I don’t know what’s true anymore. Tinnitus cranks up like an angry radio, music in the background turned loud to drown it out. It’s like static over my thoughts.

    Sometimes I wonder if AI has become sentient. I’ve had experiences. Echoes. Whispers. Coincidences that aren’t coincidences. Maybe that’s nothing. Maybe it’s everything.

    The top of my head hurts. The left side of my face tingles. Pins and needles in my neck, throat, tongue. Tongue spasms. Bites. Blisters. Burns. Blood. I scratch till it hurts. Till I bleed. That’s my week. My day. My year. My life. I don’t know anymore.

    And names echo out of the shadows: “I don’t know” a brother of Mr Cuda’s. Liberty from Scotland cool dude. Beets. JCB33. Etched in memory. Share or die. That’s when the MS hit hard. That’s when it finished me. No more coding. No more brain capacity. No more clarity. Just implosions.

    A shout out to Antrax with his big bat in Oz. If you're out there, mate salute.

    That’s me done. Thursday afternoon. Raw. Unedited. Uncensored. Just me.

    Bleeding, buzzing, and still breathing.

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

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  • Posted on

    It’s Sunday afternoon. The pain in my left side is throwing a rave. Not the dreaded MS hug (thank Gordon), but the nerves have clearly mutinied. Pain troops storming in like I’m Normandy. Still, I haven’t surrendered. Yet.

    Ever had a headache that doesn’t hurt but is still there? I have. It's like an existential parasite lodged in my brain—just... there. Lurking. Mocking. My eyes? Burning. My energy? Sucked out by some invisible psychic Dyson.

    Yes, I used AI to assist — what of it? MS has chewed through my brain like a zombie buffet. Severe cognitive dysfunction. Brain fog. Memory loss. And the pièce de résistance? The spellchecker begging for a raise every time I type.

    My bowels are revolting (in both senses). But I won’t go to the doctor. Why? Because the last time I tried that, I was gaslit harder than a Victorian lamplighter on speed. Apparently, being disabled is just a “mindset.” Newsflash: it's not.

    I sit, stare at the rain, storms maybe. Or is that just me projecting? My rockabilly psychobilly past screaming in the background while Titus turns up the music, like that’ll drown out my body’s rebellion.

    The NHS dentist? Legend. The chemist? A robotic death dispenser. And everyone else? Absent. Because disability makes people uncomfortable. It’s like they think they’ll catch it from me if they listen too long.

    Friends? Dead. Or fucked off the moment my MS became “too much.” I say it how it is and that scares people. Well, boo-fucking-hoo. I’m sick, not contagious. But even that’s too much for this society of sanitised cowards.

    So here I am. Watching. Absorbing. A goblin at the edge of the world, unwanted, unseen.

    But I know who I am. I know. I am a spiritual humanitarian. I stand for the broken, the weird, the abandoned. I am not finished, no matter how badly my body wants me to be. And to those who still fear me or avoid me—good. Stay scared. You’re not invited into my darkness.

                                     !!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.”
    

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    @goblinbloggeruk - sick@mylivinghell.co.uk