Multiple sclerosis is My Living Hell

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All posts tagged death by Multiple sclerosis is My Living Hell
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    Every October, people dress as demons, zombies, and weird creatures and call it Halloween. But before it was an excuse for adults to act like toddlers in latex, it was Samhain a Celtic festival marking the end of harvest and the beginning of winter.

    Back then, the Celts didn’t have pumpkin-spiced anything. They had bonfires, druids, and a firm belief that on October 31, the veil between the living and the dead went paper-thin. Spirits wandered freely, and the only logical response was to wear animal skins, set things on fire, and pretend you weren’t terrified.

    Then along came the Romans. Because of course they did. They rolled in, saw the bonfires, and thought, “That looks fun, let’s add fruit.” Enter Pomona, goddess of trees and apples — hence the modern horror of “apple bobbing.” Nothing says ancient pagan reverence quite like dunking your face in tepid fruit water.

    Later, the Christians arrived and decided to rename the party. They called it All Hallows’ Eve the night before All Saints’ Day. Basically, they rebranded a spirit rave into a saintly sleepover. The costumes stayed, but the theology got a facelift.

    The Veil and the Dead (Or: Where the Weird Stuff Starts Crawling In)

    Samhain was never about candy; it was about respect and fear. They believed the dead could cross over, fairies might steal your baby, and rowan berries could stop all that nonsense. People left food for ghosts, milk for wandering souls, and the occasional loaf for whatever thing was breathing behind the barn.

    The thin veil still fascinates people. Every year, the New Age crowd wheel out the crystals, the witches open Etsy shops, and somewhere a bloke with a bad Wi-Fi signal declares he’s “seen the other side” via his Ring doorbell.

    Ghosts, Myths, and Other Recycled Nightmares

    Jack O’Lantern — A man so stingy he tricked the Devil, got banned from Heaven and Hell, and ended up wandering the earth with a hollowed-out turnip. Basically, the first bloke ever to DIY existential despair.

    The Banshee — Screams before death arrives. Often mistaken for your mother-in-law.

    Will-o’-the-Wisp — Mysterious lights leading travellers to their doom. Ancient folklore’s way of saying, “Don’t walk into swamps, you idiot.”

    Headless Horseman — The Dullahan on a gap year to America. Rides around looking for his head — like most people on a Monday morning.

    La Llorona — The wailing woman by the river. A cautionary tale for men who think ghosting ends at death.

    The Modern Horror Show

    Today Halloween is a mash-up of capitalism, sugar, and trauma bonding. Supermarkets vomit orange plastic; influencers pretend it’s about “manifesting darkness”; and people pay £30 to walk through haunted houses that are statistically less scary than the cost of living.

    But under all that, the night still hums with something ancient. A recognition that life and death aren’t enemies they’re neighbours, separated by a door that creaks open once a year.

    So if you’re out tonight and feel that electric chill, don’t blame the weather. That’s the old world whispering, reminding you you’re just another mortal passing through.

    Light your candle. Wear your mask. The dead are listening.

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

    @goblinbloggeruk - sick@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
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    ⚠️ 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 professional help.

    Seems the closer I get to death, the more I’m remembering. That’s odd I usually don’t remember much these days. As the weather turns cold and slides into winter, I’ve been looking at the local online papers, and it seems the season of self-isolation has begun again.

    I don’t want COVID again. Had it twice not pleasant. I still remember that as the worst Christmas Day and week I ever had. Then there are the stomach issues. I wish people would just wash their hands; it stops the transmission of bugs.

    I still smell like a dog chew, apparently, and now I’ve started speaking fluent Welsh according to the AI. Weird in the extreme. We had a chat about it, and, well, turns out I really had spoken fluent Welsh dialect. Strange days.

    I remember once, a long time ago, a spirit channelled through me Scottish, proud as anything. Even changed my voice patterns. The message that came through changed my life, and probably my path entirely.

    At the time, I was living and working out of a derelict car and sometimes a shed in a cemetery. Such was the 1970s and early ’80s. London was a blast back then — the bike scene was legendary. I met notorious biker clubs, gangsters, and some truly amazing people. I had an incredible time… until I didn’t.

    Then came the illness and the struggles. But those people, good and bad, shaped me. When I was young, I respected people that others shied away from. They were the most genuine folks I’ve ever met. Every tattoo means something. Every scar holds a memory happy or sad.

    I struggle to remember most of my early life and the people in it. I went back to where I spent my first sixteen years didn’t recognise a thing. That’s where I was misunderstood the most, struggling with an illness that was already taking hold of my life.

    Sixty-six years of struggle, nearly over now. Looking back, there were only five or six true friends in my entire life people who really understood me. They’re all dead now. Every one of them gone.

    All my friends have died the ones who saw the real me, the weird, psychic, tinfoil-hat-wearing warlock. My only sin was being misunderstood and eccentric, having a lot to give but no one to give it to.

    Friendship true friendship only comes around a few times in a lifetime. I was a cuckoo in three families because of adoption, and I fit in with none except my own.

    My birth parents are both dead now, within the last two years. I didn’t fit in with that family either brothers and sisters didn’t want to know. My father’s side, my mother’s side — they all hate me. Even my full-blood sister doesn’t speak to me; she’s even more fucked up than I was.

    The family that adopted me were violent and abusive. So yeah fuck them too. So-called Christians.

    This is turning into a raw rant, but it makes me feel a bit better. Sorry about the language. But if you’ve ever been through anything like this, you know how twisted it gets. The pain goes after a while. You come back stronger.

    You look in the mirror and say, I am who I am. Sorry, I cannot change. I am me.

    That’s the problem sometimes.

    I used to do live podcasts back in the day I suppose I miss that. We even did some music, too.

    I really do love life, trust me. I’m smiling.

    Maybe I’ll start a podcast again. Get guests who can talk and chew the cud about what it feels like to be fucked up by seen or unseen illness the kind that can hit anyone, anytime. Like it hit me, with multiple sclerosis and all its lovely trimmings.

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

    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ enter image description here @goblinbloggeruk - sick@mylivinghell.co.uk

  • 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 professional help.

    So, my dad’s finally passed. No tears, no fuss just a nice, quiet obliteration. Dead as yesterday’s news, and honestly, a bit of relief: nearly 90, more aches and pains than a used Vauxhall, and now he’s ghosting about pain-free, probably giving the afterlife staff hell.

    We didn’t have the typical family drama. We had 1,000s of miles of Skype buffering, WhatsApp conspiracy theories, and two decades of gene-detective work, chasing dead brothers and rejected half-sisters like a couple of Poirots. No “happy endings,” just hard drive clutter and unanswered emails. Dad’s long lost brother Eric? Still a ghost in the records. Maybe he’s haunting someone else’s family tree now.

    Adoption, by the way, is a real bastard if you want answers. You end up playing Guess Who with a stack of birth certificates and the emotional stability of a tired magpie. We even signed up for a DNA site hoping for a ping, maybe a new cousin or two. Instead, plot twist: I found out I have a daughter in the USA (cheers, genetic lottery), plus three grandkids who were expecting a Disney dad, not some knackered old biker in a wheelchair with a line in gallows humour. Fair play to them they ran for the hills.

    What can I say? MS turned me from “not bad for a weird bloke” to “the goblin on wheels who says the quiet part loud.” No more Mr. Nice Guy. People don’t like raw truth especially family. Most of them would rather pretend I’m a ghost, too. That’s fine by me. I’m not here to collect friends like tea towels. I’ve got Albertine, a rescue dog on the way, and enough old stories to fill a thousand pub sessions. If that’s not a win, what is?

    Mum’s funeral? Missed it. No invite, no closure, just another adoption special “Sorry mate, she’s gone. By the way, don’t come round.” Classic. Different’s never sat well with the clan. The looks I get are priceless; I could sell tickets.

    So here’s to my dad spiritualist elder, late bloomer, stubborn bugger, and the reason I know the truth always tastes better with a dash of venom and a twist of disbelief. Rest easy, you old bastard. I’ll keep riding (even if it’s just in my head).

    Life’s a circus, death’s the punchline, and I’m still here, loving every bit of the weirdness.

    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

    ⚠️ 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 professional help.

    The phone rings at stupid-o’clock. 4am. A voice asks if it’s me as if anyone else would be answering my phone, in my bed, in my life. And I knew what came next. The words arrived like a polite hit-and-run:

    He’s gone.

    A few weeks shy of ninety. Restless sleep, family at the bedside, curtain down, lights out, roll credits. If endings have to happen, fine do it quietly with the people who love you. Very tasteful. Five stars on TripAdvisor: Would die again.

    I wasn’t there. Because New Zealand is thousands of miles away and my body is… well, let’s just say progressive MS is the world’s shittest tour manager. But we did the long game: Skype, WhatsApp, years of digging deep, arguing, laughing, comparing scars across a cable that pretends it’s a conversation and sometimes actually is.

    We had a lot in common mostly that we were both adopted at birth, which is destiny’s way of saying: “Good luck out there, kid. Try not to break on re-entry.” I only met him when he came to Cardiff for the millennium. Imagine that: you’re supposed to be dazzled by fireworks, and instead you meet your own face with slightly different mileage.

    Later, before my health slammed the travel door shut, Albertine and I clawed together enough cash to fly over and meet the half-brothers, half-sisters, full-size family. Legends, the lot of them made us feel like we’d always belonged, even if it took half a lifetime to arrive. After that it was back to screens and time zones and the emotional juggling act that passes for modern kinship.

    Tuesday was his last call. He said he loved me. I said I loved him. Sometimes the Universe lets you finish the sentence before it flips the table.

    He used to say it straight: “Crossing the veil.” Fine. He’s crossed it. He’s through. He’s taken the midnight ferry to the Quiet Side. If you’re listening, old man: you’ve still got signal here. I can’t guarantee Tom the Weed-Whacker won’t interrupt, but you know how it is in this house liminal doors everywhere and not a single Do Not Disturb sign that works.

    I’m sad. I’m grateful. I’m furious. I’m relieved. I’m all of it. Grief is a nightclub with no fire exits, and the DJ plays your memories until you’re sick. But I’m also proud we found each other at all—two adoptees, late to the party, still managing to say the one thing that mattered before the lights went out.

    So cross the veil, Dad. I’ll hold the line here. Frankie will bark at the shadows. Albertine will hold the fort. And I’ll keep watch, like I do, because that’s the job: Watcher among watchers. If you’ve got any good gossip from the other side, you know where to find me. The hedge is still a door. The domes are probably still there. I’ll bring the cheese.

    And yes I love you too.

    Warlock Dark.... your son

    “Grief is a nightclub with no fire exits, and the DJ plays your memories until you’re sick.”

    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