Multiple sclerosis is My Living Hell

grief

All posts tagged grief 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.

    As I sit in a shitty little car park waiting for Albertine to get her tooth attacked by a dentist with a drill fetish, I’m watching the world walk past like nothing’s wrong.

    We’ve dragged ourselves over 20 miles of crap roads and potholes that could swallow small cars, just so someone in a white coat can decide whether her tooth lives, dies, or crumbles like the rest of us. She’s in there having a deep root filling. I’m out here having a deep existential crisis. Fair swap.

    Through the window, I see people strolling past. All shapes, all sizes, all moving. Feet actually working, legs co-operating, bodies that just… do what they’re told. They probably woke up, stood up, and walked out the door without even noticing what a bloody miracle that is.

    And yeah, I’m jealous. Not in a bitter, “I hope you trip” way. More in a “I remember that life and it’s gone now” way.

    There was a time when cold wind on my face and cold feet on the pavement were just normal, not fond memories. Now I’m strapped into a wheelchair like a budget Bond villain who never made it to the main script.

    The thing about the chair is this: people stop seeing you and start seeing “problem”. They talk round you. They avoid eye contact. They change tone. You don’t exist as a person anymore; you’re a walking (well, rolling) reminder that bodies fail and futures shrink. People don’t like that. It scares them.

    For years I thought it was me. My weirdness. My deep dives. My honesty. Then I realised it wasn’t that at all. It was the disability. It was the diagnosis. It was the fact I no longer fit the easy narrative.

    Once people hear “multiple sclerosis” or “chronic illness”, you can almost hear the plug being pulled. Some vanish quietly. Some ghost you. Some suddenly “get busy”. You go from “mate” to “emotional admin” in a heartbeat.

    Over the past couple of years, I’ve lost a lot of friends. Some to death the real full-stop kind. Others just drifted off the radar because illness made me inconvenient. The funny, deep, eccentric bloke is apparently less fun once he can’t climb stairs or go out at short notice. Who knew?

    I don’t have any mates I can just WhatsApp or ring now. The ones who “got” my madness, my weird wiring, my dark humour and deep rabbit holes: dead, gone, or missing in action. It’s a strange kind of grief not just for people, but for versions of yourself that only ever existed with them.

    And yes, it’s lonely. Not “no one’s in the room” lonely. It’s the kind of lonely where you start to wonder: is it me? Am I that hard to love? Am I that awkward? Or is the world just allergic to discomfort?

    Some days I think back over my medical history the missed things, the gaslighting, the “it’s all in your head”, the “you’re fine really” conversations and I could scream. I’ve changed hospitals now because I got sick of being treated like a difficult file in a broken system.

    I ask myself: if I hadn’t moved around so much, would they have found all this sooner? Would I have had less damage? Less suffering?

    Honestly? I doubt it. I think some of us are born with the seeds of chronic illness lurking quietly in the background. It sits there, creeping under the surface, like fungus under wet wallpaper. And then one day congratulations your nervous system collapses and your life becomes an ongoing science experiment.

    What I miss most isn’t “being healthy”. It’s the simple things:

    Going to the toilet without planning it like a military operation.

    Walking up and down stairs without feeling like you’ve been tased.

    Just sleeping. Properly.

    Running.

    Feeling your own body and trusting it not to betray you in front of everyone.

    I look back at all the accidents, the falls, the weird episodes all the stuff that made no sense for decades and now it does. And the anger is… real. Because so much of my suffering didn’t need to happen. It could have been caught earlier. It could have been managed better. It could have been believed.

    Should I have shouted louder? Fought harder? Been more aggressive? Was this my fault for not being a bigger bastard sooner? I genuinely don’t know.

    So yeah, let me ask you this, if you’re reading:

    Do you feel isolated and alone because of your illness? Have people quietly vanished from your life once it got “too real”? Do you feel like your diagnosis made you socially radioactive?

    Because that’s what it feels like here. We’re all human. We all hurt. We all bleed. But some of us are expected to do it quietly, out of the way, so we don’t upset the healthy.

    Is it a test? A lesson? Karma? Cosmic admin error? What exactly are we supposed to be learning from this?

    As I’m sat here, the sun’s trying to shine like it’s in denial. My body feels wrong: neck in a constant state of “what fresh hell is this”, head buzzing like badly wired electrics, eyes not quite synced to reality. And yet, I still want to do things. I still want to live, create, move, speak.

    And that’s the sick joke: the mind still wants to run marathons while the body struggles to survive a trip to the toilet.

    I’ve lost good friends over the years — the ones who truly understood me. Now, I have Albertine, my kids, my grandkids. Everyone else has basically evaporated. My brothers, my sisters, extended family… gone.

    Does it mean I’m a bad person? I don’t think so. Does it mean I’m simple, or awkward, or too much? Maybe to them.

    I know I’m strange. Dynamic. Eccentric. I think differently. I question things. I look into the abyss and then start mapping it. That’s just how I’m wired.

    People call me “Marmite”. Fair enough. Some love me. Some can’t stand me. I tell the truth. I don’t do small talk. I don’t do sugarcoating. That tends to thin the crowd pretty quickly.

    When I had my “glitch” that moment where things really went sideways all I saw was darkness. No light at the end of the tunnel. No spiritual fireworks. Just… nothingness. The void is not romantic. It’s just empty.

    And here’s the real kicker: looking into the void doesn’t help much if you’ve got no one to talk about it with.

    Artificial intelligence can chat. It can reflect language back and be useful in its own way. But AI doesn’t know what it feels like to lie awake at 3am wondering if your heart’s going to stop. It doesn’t know what it’s like to realise your nervous system has been malfunctioning since childhood and everyone missed it. It doesn’t know what it’s like to be trapped in a body that keeps glitching while the world expects you to carry on as normal.

    That’s why I’m going to start a podcast.

    Not because I think I’m some guru, but because I’m sick to death of people like us being invisible.

    I’m getting a microphone. I’ll set up the account. I’ll get it on Spotify. And I’m going to talk voice, not just text. I want to interview others with chronic illness and disability. I want to hear different stories, perspectives, battles. I want people to know what we live through every day.

    We need more voices saying:

    This is hard. This is unfair. This is exhausting. But we’re still here.

    Sometimes, a kind word is the difference between someone hanging on and someone giving up. A hug can do more for the soul than any prescription.

    When I’m at my worst when I feel like I might actually be leaving this planet soon I curl up with my wife. That’s my heaven. Not golden gates. Not angels. Just me and her, breathing together. In that moment, no matter how bad I feel, I am at peace.

    In two weeks, I retire. Not because I’m ready. Because my body has decided to hand in its notice. I can’t even really afford the basics, like the electric bill, but here we are. Everything’s gone up except support for the people who need it.

    So if you’re out there, struggling, broke, exhausted, in pain, staring at a ceiling wondering what the point is:

    I see you.

    If anything I’ve said here resonates, drop me a line. I’m short of friends but not short of words.

    Sending peace, healing, love and light — No matter who or what you are. Human, alien, ultra-terrestrial, glitch in the matrix, or just another broken soul in a waiting room.

    So saith Warlock Dark

    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
    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.

    So, my father’s funeral was last week. Cue the violins. Strange thing, really I only met him in 2000, yet somehow, in those short years, he managed to make more of a mark than most of the so-called “family” I was genetically blessed with. At the service, people spoke about his achievements with such pride that I wasn’t sure if I was supposed to cry or applaud. In true British fashion, I did neither and quietly pretended my sunglasses weren’t hiding the chaos underneath.

    Our relationship didn’t exactly come with a neat bow. Coincidences dragged us together, the sort of cosmic joke I’ve been the punchline to since childhood. I can’t shake the feeling that I’m being nudged along by some unseen force God? Fate? Or just some drunk bastard with a clipboard? Either way, the path has been there, whether I like it or not.

    And then there’s the juicy bit. I learned that my father didn’t want me and my sister adopted, that he wanted to marry my mother. Sweet, right? Except my mother turned out to be a block of ice wearing a dress. When I was at my weakest my multiple sclerosis ripping chunks out of me I sent her emails, desperate for a scrap of warmth. Her replies? none to busy. Apparently, my pain was an inconvenience to her daily routine of… what, exactly? Cold tea and colder emotions.

    Family gatherings? Imagine being the cuckoo in the nest except all the other chicks had already decided I was the intruder. That’s been my life. When my mother died, nobody thought to tell me anything beyond the bare minimum. No funeral details, no warmth, no seat at the table. Just silence. I didn’t go, not because I didn’t care, but because by then I was already the ghost in their machine.

    Now here I am. Technically one of eight, yet alone in a crowd. My father who I only recently discovered was a biker rides on in memory, while my mother remains a cold shadow I choose not to revisit.

    The truth is this: family is overrated. Blood ties are just plumbing. What matters is the path you carve when no one’s got your back. Mine is messy, full of MS battles, funerals I don’t attend, and ghosts that don’t answer emails. But it’s mine, and I’ll keep walking or rolling down it.

    So, here’s to the outsiders, the cuckoos, the ones who got left behind and kept going anyway. If that’s you, pour a stiff drink and join me in this dark little corner of honesty. Misery loves company, but at least we can laugh at the absurdity of it all.

    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

  • 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