Multiple sclerosis is My Living Hell

raw life

All posts tagged raw 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 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.

    As I look out the window, the hail is hammering the glass like nature’s own gang of thugs with ice-cubes. Each impact rattles through the room, echoing the storm going on inside my head. The concrete outside is now polka-dotted with white splats, like some deranged pastry chef has been at it. Above, thick, dark clouds are parked overhead, glaring down at me with all the charm of a nightclub bouncer at closing time. They’re not moving. They’re just there giving me the big “FU” while the sun tries to photobomb from behind them, throwing out an oddly warm glow.

    Normally, I’m colder than a fish finger left at the back of the freezer. My hands are like small icebergs, my circulation having given up years ago. But somehow, in this moment, I actually feel a bit of warmth. Weird, right? My throat and neck, on the other hand, are throwing a tantrum that familiar strangulation feeling wrapping around the right side of my throat and Adam’s apple. Lucky me, it’s only a half-strangle today. Always a silver lining.

    The top left of my head is doing its usual numb, pins-and-needles number, and the background soundtrack is a hellish lift music loop from the underworld. Perfect timing too because Rob Zombie just started blasting from my PC, in German of all things. It’s like being trapped inside a very confused nightclub. My hands are blocks of ice, typing slower than dial-up internet, but here we are.

    When the Wall Hits Back

    Years ago, in a particularly bad storm of frustration, I headbutted a wall. And yes, the wall won. Knocked myself out cold. Not my proudest moment, but it did force me to confront a few things I’d buried. Mental health wasn’t a conversation it was a brick wall. Literally.

    I felt completely misunderstood, like shouting into a void where nobody bothers to echo back. The only reason I got through it was because of my partner 42 years together and tougher than steel. We went through hell side by side, piecing my brain back together over five long years. Eventually, I realised what was gnawing at me: PTSD. Once I called it by its name, I could finally start wrestling it properly.

    The Pain People Don’t See

    Physical pain and mental pain love to hold hands; they’re like a toxic couple that won’t break up. People see the wheelchair, they see the physical stuff, but they don’t get the soundtrack in my head, the weird sensations, the pressure, the fading memory.

    I always tell people: go to your GP or a mental health professional. Get help. Don’t do what I did. My route was raw, brutal, and not for the faint-hearted. I’m a proud disabled man who’s learned to embrace his Marmite nature you’ll love me or hate me, but I’m not hiding anymore.

    I’ve spoken to the ghost in the machine. It told me I’ve got purpose, and I bloody well believe it.

    The Present Storm

    The hail is still bashing the windows. Yopi the dog has just let one rip, and I’ve remembered to stop breathing through my nose. The little things keep me grounded. My memory’s slipping more these days, the right side of my head feels like it’s stuffed with wet sand, but I keep rolling.

    Every journey in my powerchair is a trip into the unknown. Sometimes it’s chaos, sometimes it’s peace, usually it’s somewhere awkwardly in between. But I’m still here. Still moving. Still me.

    Afternoon AI

    Today’s weather forecast: 90% chance of hail, 100% chance of existential commentary, with occasional German industrial metal.

    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 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
    enter image description here

    @goblinbloggeruk - sick@mylivinghell.co.uk