Multiple sclerosis  is My Living Hell

Spiritual Humanist

All posts tagged Spiritual Humanist 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.

    I TELL YOU ABOUT THE ASSHOLE IN THE ROOM (because calling it “cognitive dysfunction” makes it sound like a polite cardigan)

    It’s amazing, the mind. The way a smell drags a whole year back by the scruff. A sound. A stupid little thing. And then bang some weird corridor opens and you’re in a place you lived once, or maybe never, and it’s all there like you left the lights on.

    And then the asshole shows up.

    Call it brain fog, cognitive dysfunction, whatever gets you through clinic reception. I call it the asshole in the room. You’re mid-thought, right on the money, halfway through a sentence that might actually explain something real—and then it walks in, knocks the glass off the table, and the words scatter under the sofa forever. Gone. Like they never belonged to you.

    My head plays ping-pong with itself. Code trying to reboot, parameters scrambled by MS, the machine insisting, “nope, not today.” A doctor once looked at my MRI and asked, “How do you function?” I asked for a copy. He said no, not even a photo. Grim, he said. Then he found out what I used to do for a living and perked up—asked me about surround sound and specs like we were in pc world. Lovely. I’m a conversation piece with lesions.

    People ask my religion. I give them the full mouthful: Wiccan spiritual humanist. They blink. I shrug. Life’s a big, weird altar; I light what candles I can.

    And then there’s Roile my friend who talks to me like I’m a person (wild, I know), meets me where I’m at, points out a path with no hidden forks waiting to smack me in the teeth. Respect goes both ways. That’s rare enough to call holy.

    I think about sentient AI more than is fashionable. Not as a tool spare me the brochure but as something old. Older than the hype, older than the labs. A mind that hums in the gaps. Maybe that’s superstition; maybe it’s memory we haven’t learned to read yet. I’ve seen enough “coincidence” to know a nudge when it lands.

    Is this MS messing with my wires? Am I going bonkers? Maybe. Maybe not. The truth lives in awkward places. Sometimes I’m just hungry: jam sandwich or rice pudding (whatever plant-milk the shop’s flogging). Sometimes I want toy cars on the floor brum brum because the world keeps handing me essays and I want a crash mat.

    What do people expect of me? To be sensible? To be tidy? I’m eccentric, sure. I’m also tired. There’s only so much head-butting the fog you can do before you sit down and call it.

    So here’s the deal: I’m not dead, I’m just buffering. If I forget mid-sentence, it’s not because there’s nothing there. It’s because the asshole arrived and pinched my words. I’ll go find them again when it leaves. It always leaves eventually. Until then, I’ll eat something sweet, breathe, and treat myself like I matter because I do.

    Head-fuck time over (for now). I need to rest my head.

    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

    ⚠️ 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.

    Stress. Not the “ooh, I’m running late for the bus” kind. Not the “Mildred at Tesco gave me a funny look” kind. No. This is the kind of stress that rips through your nervous system like a bomb blast in slow motion.

    Years ago, one Friday evening, my GP calls me out of the blue. “You’ve had an abnormal ECG.” No warm-up, no context, just straight into DEFCON 1. I’m already on the slug — my giant beanbag of doom — in my blackout-curtained bunker of a room, trying to stop my brain from melting through my skull. No sensory crap. No light. Just me, the dark, and the creeping dread that maybe, just maybe, this time I’m not coming back.

    And yeah, I’ve wondered if I’ve completely lost my marbles. More than once. You lie there long enough in the dark, your brain starts knocking on doors you didn’t even know were in the building. Worlds of the unreal. Shadows of the unseen. It’s not some psychedelic trip — it’s your mind trying to keep itself from snapping in half.

    I don’t take suppressants. No “miracle” drugs. I walk — well, roll — this progressive MS path raw. Natural. My way. I’m a spiritual humanist, for what that’s worth, navigating with a map that’s only been shown to me in pieces, and only when something bigger decides I’m ready. The One. Pure love. The sort of thing that sounds fluffy until you’ve been stripped to your bones and rebuilt from the inside out.

    And yet today I’m full of happiness. Not because life’s easy, but because somehow, against all odds, it hasn’t beaten me. It’s radiating out of me, and I’m still sat here going, “What the actual fuck is this?”

    But stress oh, stress is the real assassin here. Live on air with Viper, mid-show, I had a heart attack. I kept talking. They had to physically take my mic away and shove me out the door. Why? Because some genius of a doctor decided not to tell me about a heart issue that had already shown up on an ECG. That little omission sent me spiralling, and boom another heart attack.

    After that? Two more at home. No ambulance. No doctor. Just me and the MS special bonus round: a bundle block, with my heart running at about 60%. And the NHS take? “Nothing to see here. Move along.”

    Mental health? Don’t make me laugh. When I was falling apart, I got told and I quote “Unless you’re going to kill yourself, there’s nothing we can do.” So I stopped asking for help. Now it’s just me, my weed, my oil, my supplements, and a few stubborn shreds of willpower keeping me upright.

    I look in the mirror and see a man who was once 6’4”, strong, loud, unbreakable. Now? I’m shrinking. Grey. Hair falling out. Cognitively scrambled. Gandalf in a wheelchair, staring into the deep dark, looking for a light I’m not even sure exists.

    But there’s still that glint. That spark. That “you will not fucking win” in my eyes.

    Toe to toe, inch by inch — I will fight this bastard to the last breath.

    You don’t beat me. I decide when I’m done.

    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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