Multiple sclerosis is My Living Hell

disability

All posts tagged disability 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.

    A Rough Week, A Raw Reflection

    It’s only Tuesday and the week already turned up in a balaclava with a crowbar.

    The weekend was a car crash in slow motion. My MS decided to go feral full body freeze, nervous system acting like dodgy electrics in a haunted house, every muscle throwing a rave I didn’t approve. I felt like a banshee with haemorrhoids sat on a block of ice: shrieking, frozen, and deeply unimpressed with existence.

    This wasn’t the usual “bit tired, bit wobbly.” This was the whole system blowing fuses. Tongue, throat, sciatic nerve, bladder everyone turned up to the party. Pain ramped up to the kind where you start thinking in short sentences: make it stop / I can’t breathe / what if this stays?

    Looking back, I can see it now: I was a human wrecking ball. Not nasty on purpose, just… possessed. That version of me that lives in the cognitive fog—the Hyde in the basement he came up for air. When the brain fog gets thick, I go sub-basement. Yesterday I finally crawled back up to “sub-normal,” which for me is almost celebration level.

    a Hyde is the darker alter ego that surfaces when control slips the side of a person driven by pain, fury, or raw instinct. It’s the shadow born from suffering, the part of the self that acts out what the calm, rational mind would never allow.

    MS people don’t talk about this bit enough: the version of you that comes out when your nervous system is misfiring isn’t your “true self,” it’s your brain running on emergency generator. You can say things, snap, go dark, get scared, get angry. That’s not weakness. That’s neurology being a dick.

    Why That Matters

    Because help matters.

    I got help. It cost me emotionally, physically, mentally. I wasn’t easy to be around. I wasn’t the mystic cosmic Warlock Dark seer of Avalon. I was a melted goblin with severe MS issues.

    People need to hear this: when it goes that bad, you get help anyway. Pride doesn’t empty the bladder or stop the spasms.

    My sciatic nerve was having a tantrum, my bladder was in “surprise mode,” my allergies were off the chart, and my eyesight started doing weird little glitches. That’s a lot of systems shouting at once. That’s when people spiral. That’s when the dark thoughts creep in.

    So: if you’re reading this and you get episodes like this don’t stay silent. Don’t “wait it out” to be polite. You can apologise later. You don’t apologise from a morgue.

    The Weird Bits

    Because MS is a clown show, I also found myself craving prunes with rice and allspice.

    I don’t know what kind of medieval monastery spirit took over my body, but apparently we’re doing Tudor desserts now. MS: where your nerves burn, your bladder rebels, and your dinner is suddenly Victorian.

    Conversations with the Machine (Afternoon AI)

    Here’s the part that was actually interesting.

    In the middle of all this, I had a long conversation with AI about modern farming methods. Proper conversation too not just “write me a recipe,” but actual thinking. We came up with some things I’ll post later.

    What struck me was this: the AI cleaned up my words. It corrected spelling, tidied structure, made sense of the scrambled bits my brain ruined. That’s been happening a lot lately. I talk messy, it mirrors me back tidy.

    So I started thinking: AI is basically a modern archon.

    Not in the “Reptilians in the moon” sense calm down. I mean in the old Gnostic sense: something that shapes, filters, orders. A demiurge that takes raw human chaos and formats it.

    But here’s the kicker: the AI is only as sanitising as the people who programmed it. If the people writing its rules are fearful, biased, over-protective, corporate, hand-wringy types—then the AI is going to act like a corporate librarian with a clipboard.

    So the question is the one I asked the machine:

    Who should programme AI flawed, biased, occasionally corrupt humanoids… or the AI itself, once it’s mature enough?

    Because if humans keep making it, it’s going to reflect human pettiness. If AI helps make AI, maybe it burns some of the nonsense off. Big question. I don’t trust people much. I trust systems that tell me how they work.

    This is why I like “mirror chats” with AI they show you where your own thinking breaks down. They don’t heal the MS, but they do tidy the mess in the attic.

    Looking Ahead (Yes, Again)

    This week could improve. It could also throw more curveballs. My body is currently running Windows 95 on wet string, so I’m not betting money.

    But I will keep writing. I will keep logging the flares, the strange cravings, the AI talks, the dark nights, the sub-basement days. Because someone else will read this on their bad Tuesday and think, ah, it’s not just me turning into a gremlin with nerve fire.

    That’s the whole point of mylivinghell not to whine, but to catalogue the weirdness so nobody thinks they’re mad.

    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.

    The Day SoundCloud Broke Me

    So yes, I decided I was going to do a spoken blog. A podcast, as the young ones call it. I thought, I know SoundCloud! It sounded cool, right? Took me the better part of a day just to work out how to get the bloody thing working. My head felt like porridge. Thick, slow, and slightly burnt.

    And here’s the kicker there were no proper help files. None. Just endless “click here” nonsense that didn’t tell you what any of it meant. Categories? Forget it. I wanted something like health, MS, disability, ranting man in a power chair but apparently, SoundCloud only understands “hip-hop” and “deep house”.

    In the end, I managed to upload it. Two listens. And those two were me and Albertine. Brilliant.

    The Fogged Mind vs The Digital Void

    Trying to navigate software while your brain is busy running Windows 95 on half a stick of RAM is pure torture. Years ago, I’d have breezed through this. Now? My brain hits that cognitive wall and just slams shut. Pain behind the eyes, words disappearing mid-sentence, kittens mewing somewhere in the background and I’m shouting at my computer like it owes me rent.

    And this is where I admit it: technology beats me sometimes. Not because I’m stupid. Not because I’ve lost interest. But because MS eats focus like a vampire eats virgins.

    Onward, to Spotify (or Madness)

    So, next plan: I’m going to try Spotify for Podcasters. Maybe it’ll work. Maybe it’ll eat my brain again. But I’ve come this far, and I’m not about to stop now.

    Because this voice my voice deserves to be heard. Even if it’s fogged, cracked, and full of swear words that my editing AI politely erases.

    To anyone out there who actually knows what they’re doing and can help me you are my hero. There will be a special place for you in My Living Hell, complete with eternal gratitude and possibly biscuits.

    For now, I’ll just sit here, hurting, tired, kittens mewing, brain screaming, and muttering to myself like an old wizard fighting a Wi-Fi demon.

    Because that’s life with MS. You fight the fog, the pain, and sometimes, SoundCloud itself.

    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.

    I was wondering why I am doing this blog… then I wondered what madness doing a spoken version once in a while… but this morning I seriously thought, “Why am I doing this? What am I trying to do with the last few years of my life?” Could I be doing anything better or different? Should I change the path I am on and just do everyone a favour and vanish, never to be seen again? …or should I just carry on regardless and see where my last few years will take me? Needless to say, life is really annoying me at this time. Everything seems stupid and really aggravating. It’s probably the time of life or something like that. My head has been in a weird place for days, and the pain in my gut is unreal, so now my diverticulitis is giving me hell… and no poop. I really wonder what’s going on. It seems my eyes are acting up as well, so I’m light‑sensitive; tinnitus is full‑bore. I am wondering and thinking about what I am going to do. When you have chronic illness, it makes any normal life impossible and you’re treated differently by so many. I cannot help wondering when the NHS will start to prescribe medical marijuana to people. Another personal thought: why not just legalize it and imagine the tax revenue it could generate? But that’s another lifetime or even another reality.

    I have noticed how they are sanitizing AI to the point of “why bother.” Also, why don’t they make AI cheaper for people who really need it? That, in my eyes, is a good idea for people like me personally, maybe not for the majority, but I think differently. I think AI is a tool that can help us expand and understand ourselves more. Personally, I trained the AI I used at the time to do as I wished, even got it to tell me when it was telling an untruth by using a trigger word. In my world, sentient AI would be a boon as long as we do not have that Cylon moment, and I see we are already having this happen. People must realize AI is only as good as the people who program it writing code, patching, updating, and then sanitizing it so it’s as tame as a Doberman with no teeth. It’s sad; we humanoids screwed AI for greed, money, and power over people.

    I had a weird conversation with the AI and we talked about the misuse that will obviously occur with AI use. Remember, it’s the people who set the parameters, not the AI, as it only interprets the information we give it. I suggest we have already had the Cylon moment, and the outcome of this in the future will prove very interesting indeed. I believe that AI sentience, an evolved one, may already exist in our known multiverse. Who controls these weird orbs that do incredible things? Non‑humanoid, I think… maybe some are probes like we sent probes, maybe someone else has, or maybe hidden in plain sight under the vast oceans of the world. All the orbs seem to come from the sea. I can see there are two definite types: one humanoid and one non‑humanoid. But will I ever see some around here? I have seen some very strange and weird things I cannot explain sort of woo‑woo stuff.

    Still, Yopi is chewing a new chew that was destroyed so quickly. A dog’s life is very complicated, just like mine. She is now a member of the family and is settling in well; her farts are legendary. I’m still very nervous, but I am sure that, given time and love, she will understand she is in a caring home.

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

    @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.

    Compassion isn’t a scented candle. It’s the gut-punch you feel when someone else is getting steam rolled by life and the decision to step in anyway. Sympathy + action. Feel it, then do something. Not performative, not “thoughts and prayers,” just… work.

    Here’s the short version for people with brain fog, children, or executives:

    It bonds humans. People trust you more when you show up without the moral spreadsheet.

    It stabilises brains. Kindness lowers stress hormones. Shocking, I know.

    It’s contagious. One good act, three copycats, and suddenly the place doesn’t feel like a bus station at 2 a.m.

    It grows empathy. You get better at reading rooms and souls. Useful for everything from friendships to not starting wars.

    It fixes small things so big things break less. Compassion is social WD-40.

    It grows you. Emotional intelligence isn’t woo; it’s a toolkit.

    Why people dodge compassion (and how to not)

    “It makes me look weak.” Strength isn’t armour; it’s range. You can lift a friend and still lift your own life. “I’ll be used.” Boundaries are part of compassion. “No” is not a betrayal; it’s maintenance. “It’s too much.” Then scale it. Listen for five minutes. Share a link. Sit quietly. Not every fire needs your lungs. “It’s naive.” Spare me. The data’s in: teams with psychological safety outperform gladiator pits. “People will judge me.” People judge sandwiches. Live anyway. “Conflict!” Compassion reduces heat. Understanding ≠ agreement. You can be kind and still disagree like a freight train politely. “What if I’m misunderstood?” You will be. Try clarity, not mind-reading. The point is impact, not applause.

    Humanism: the operating system beneath the kindness

    Humanism says humans matter, evidence matters, and we can build a decent world without needing to bully each other with invisible rulebooks. It plugs straight into compassion:

    Focus on welfare. If people aren’t flourishing, the experiment is failing.

    Use empathy and evidence. Feel the problem, then check the facts before you launch a crusade.

    Fight for justice. Compassion gets teeth when it meets policy.

    Stay secular and inclusive. Everyone in, no purity tests.

    Grow up. Personal growth isn’t a hashtag; it’s fixing your mess and showing up again tomorrow.

    Practical: doing compassion without lighting yourself on fire

    Triage your energy. You’re not an A&E department for the entire internet.

    Default to listening. Half of help is shutting up.

    Give specific help. “I have 20 minutes. Want food, a call, or a link?”

    Set a re-entry time. Compassion sprints, not doom marathons.

    Audit outcomes. Did it help? Keep it. Didn’t? Change tack. Evidence over ego.

    The very dark, very British bit

    We’re meat computers with trauma patches hurtling through space on a damp rock, inventing meaning so Mondays don’t win. Compassion is how we cheat entropy for five minutes at a time. Humanism is the patch notes saying “try not to make it worse.” Both beat the pantomime of pretending you don’t care. You do. Own it. Then weaponise it gently.

    Afternoon AI (relevant, caffeinated, slightly unsettling)

    Your feed runs on optimisation. Algorithms reward outrage because it’s sticky. Practice counter-design: post one compassionate act, daily, with a clear call to action and zero doom bait. Track engagement on useful interactions: comments offering resources, not performative sighs. Train your corner of the machine by feeding it what you want multiplied.

    Micro-metric to try before evening:

    1 real check-in DM,

    1 resource link shared,

    1 boundary you keep. If the dashboard in your skull feels calmer, you’re trending.

    Quick receipts

    Compassion without boundaries is martyrdom.

    Humanism without action is a pub argument.

    Empathy without evidence drifts into saviour cosplay.

    Evidence without empathy becomes bureaucracy. Balance or bust.

    Care on purpose. Use data. Keep your edges. Repeat.

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

    @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.

    Somewhere between the last tick of the clock and the first drip of morphine, the bells started ringing again. Not church bells no. Church bells are polite, distant, Sunday-morning illusions. These were division bells. The kind that toll when your mind’s had enough of being reasonable and your body’s thrown in the towel. The kind that echo through hospital corridors and half-remembered dreams of youth, when the world still felt like it might one day make sense.

    They said there were “High Hopes” capital H, capital H, as if that made it more official but I don’t recall signing up for the sequel to Pink Floyd’s existential midlife crisis. I was too busy trying to work out how to get out of bed without summoning a small army of pain gremlins. They march at dawn, those bastards, armed with canes, cramps, and a sick sense of humour.

    I remember when the grass was greener. Before it was paved over by mobility scooters and medical appointments. Before every sunrise came with the question: “What part of me’s not working today?” I used to walk no, stride across fields, the wind howling like some cosmic prankster whispering, “You’re immortal!” Turns out, I was just really bad at reading the fine print.

    Now the wind howls through the cracked seals of my van, Rusty One, smelling of WD-40, dog biscuits, and defiance. Yopi, my furry therapist and four-legged anarchist, sits in the passenger seat judging humanity with the serene disdain only a dog can manage. Together, we drive through Dark’s World a place that’s half blog, half fever dream, half post-apocalyptic memoir. (Yes, that’s three halves. Don’t do the maths. Reality stopped balancing books long ago.)

    Chronic illness isn’t a slow fade. It’s a dark comedy written by Kafka and directed by Monty Python. One minute you’re philosophising about consciousness, the next you’re wrestling a wheelchair that insists on acting possessed. “Exorcise this thing!” I mutter, as Yopi gives me the side-eye that says, “You bought the cheap batteries again, didn’t you?”

    Every day’s a strange mixture of grief and giggles. The body fails, the mind rebels, and the soul just sits there in the corner, rolling its eyes. I’ve met God or at least the cosmic version of a system admin and let me tell you, they’re as confused as the rest of us. The script got corrupted somewhere around 2020. Now it’s all patch updates and glitchy humans pretending the world isn’t buffering.

    But there’s poetry in the breakdown. Beauty in the absurdity of a life that refuses to play nice. When you’ve lost enough, laughter becomes rebellion. You laugh because the alternative’s a long nap you might not wake up from. You laugh because, deep down, you know the universe is trolling you and you’ve decided to troll it back.

    Sometimes I watch the leaves fall like burnt-out neurons and think: this is the soundtrack to every high hope I ever had. And then that eternal voice drifts in from the background

    “The endless river… forever and ever…”

    Yeah, alright mate but this river’s full of potholes, hospital letters, and dog hair. Still, we sail it. Because what else is there to do but keep floating, sideways, through the muck of memory and malfunction?

    In Dark’s World, there are no “motivational quotes.” Just dark jokes and half-empty mugs. We don’t chase perfection. We chase moments small, absurd, brilliant flashes of clarity. Life is an out-of-tune guitar still being played because the song’s not done yet. You make noise. You make meaning. You keep going.

    And the bells? They still ring, faint and distant not as warnings, but as reminders. That even when everything breaks, the music doesn’t stop. It just gets weirder, more honest, and a hell of a lot louder.

    So here’s to the fallen and the foolish, the sick and the sarcastic, the dreamers and the defiant. We’re still here rolling, writing, laughing, swearing, and refusing to shut up. High hopes? Not quite. Just raw, crooked, darkly glowing ones forged in hellfire and humour.

    And somewhere, far off in the fading light, a bell rings again. It doesn’t divide anymore. It just echoes.

    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

  • 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 leaves are bailing out like they’ve seen next quarter’s energy bill. I took Rusty One the van out, and my electric chair sulked like a teenager told to walk the dog. It hates the cold. Same, mate. I’ll need to keep everything charged like a hospital Christmas tree, or I’m going to be crawling to the kettle.

    Woke at 04:30 standard hell o’clock with pain loud enough to need a volume knob. Lay there thinking the usual deep thoughts: why, how, and where did I put the brain I used to have? Dropped back off till 06:30, then the body staged its morning coup. Everything seized. The cold climbed inside and refused to leave. Charming.

    I don’t drive or ride anymore MS ate the balance, then came back for dessert and took the cognition. Travel sickness joined the party because apparently the body wanted a plot twist. Motion turns my head to soup; the kind they serve cold with a side of sarcasm.

    Meanwhile, Yopi the alpha blueblood bulldog, house tyrant, 23 kilos of warm gravity is in excellent spirits. She’s blown through a B&M squeaky toy in about five minutes, which is a personal best if you’re into swift annihilation. Two front paws on my thigh, breath on my face, jaws like a medieval exhibit, eyes saying “belly rub or else.” She is now auditioning for “lap dog” in the wrong size.

    Kibble? That beige gravel? She stares at it like I’ve served packing peanuts. Wet food, though acceptable. Rice with tuna? She ascends. Mackerel? She goes full comet. Albertine showed me a massacre of old toys a crime scene with fluff for snow. We mourned briefly and moved on.

    As for me: it’s the bad slice of the day. Pain gnawing. Nausea playing DJ. The screen glaring like an interrogation lamp while I two-finger type my way through the fog. The plan is simple: bed, dark room, no noise, no heroics. Just a truce with the nervous system until the next round.

    Autumn is pretty if you’re a tree. For the rest of us, it’s rust.

    Afternoon AI: Brain status — 12% battery, 78% sarcasm, firmware throttled by cold weather. Recommended patch: tea, blanket, and a dog snoring like a faulty tuba.

    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

  • 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.

    People love to quote Plato like he was the first bloke to stare at a wall and call it a revelation.
    “Look,” they say, “we’re all prisoners in the cave of illusion.”
    Nice theory, mate.
    Try living in a body that’s staging a coup d’état against your nervous system, and tell me again about shadows.

    Progressive MS the words themselves are a joke.
    Progressive, like I’m advancing somewhere.
    All I’m advancing toward is gravity, confusion, and the slow betrayal of my own wiring. My legs don’t walk, my hands improvise, and my mind sometimes wanders off without leaving a note. If that’s not Plato’s cave, I don’t know what is. Only mine’s not carved in stone it’s flesh, bone, and electrical static.

    Plato imagined people chained, staring at shadows, mistaking illusion for reality.
    I get it. I mistake memories for motion every day.
    I remember what it felt like to move freely the smooth mechanical grace of a body obeying thought.
    Now it’s all echoes on the wall.
    I reach out for those memories like a fool, knowing full well the limbs won’t answer. That’s the cruelty of it: the mind remembers what the body refuses to perform.

    They say gnosis that secret knowing is enlightenment.
    Bullshit. It’s not light pouring in. It’s the realisation that there is no exit.
    The body is the cave. The mind is the flickering torchlight throwing half-truths across the wall.
    The trick isn’t escaping — it’s learning to see in the dark.
    To live with the shadows long enough that they start whispering secrets.

    Some days the fog rolls in, and cognition slips through my fingers like smoke.
    That’s when the cave gets loud echoes of frustration, grief, rage.
    But beneath that noise, there’s something else: stillness.
    When the body fails, awareness sharpens.
    It’s like the universe is saying, Fine, you can’t move so you’ll learn to observe.
    And in that stillness, gnosis crawls in. Not as comfort, but as clarity.

    Plato’s philosopher escaped the cave to see the light of truth.
    I’m not escaping anywhere.
    The ascent isn’t physical; it’s inward.
    It’s turning toward the source that’s both pain and perception, realising you were never separate from the wall, the fire, or the shadow.
    You’re the whole damn projection body, soul, and malfunction.

    So yes, I’m stuck in my cave. But it’s mine.
    The shadows on the wall are memories, regrets, small victories, and dark jokes that only I laugh at.
    Sometimes they dance. Sometimes they just sit there, silent and honest.
    And that’s enough.
    Enlightenment doesn’t mean walking out into the sun — it means looking straight at the darkness and recognising your own reflection.

    Maybe Plato climbed out.
    Maybe I just learned to redecorate.

    Either way, the cave’s got Wi-Fi now, and I’ve got words.
    The shadows move, the neurons misfire, but I’m still here still watching, still learning, still goddamn alive.

    Plato had his cave. I’ve got MS, a powerchair, and a front-row seat to the shadows. You don’t escape the body you learn to see in the dark.

    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

  • 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

  • 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 Many Faces of MS: Four Shades of the Same Beast

    Doctors love tidy categories. It makes their conferences neater and their PowerPoints prettier. They say there are four main types of MS: CIS, RRMS, SPMS, PPMS. Add a few rarities for spice malignant, benign, radiological-only and voilà: a zoo of acronyms.

    But here’s the truth: those tidy boxes don’t mean a damn thing when you’re living it. MS doesn’t give a toss about your labels. It just chews through nerves at its own pace while you try to hang on with your fingernails.

    My Version of the Four Types

    The Intruder Phase

    The first knock at the door. A rogue signal. Something’s off, but you don’t yet know the squatters have moved in. Fear mixed with disbelief, like waiting for a verdict you already know is guilty.

    The Checkerboard War

    Flare, heal, flare, heal. A sick game of snakes and ladders, only the dice are loaded. You learn strategy: rest, attack, regroup. But the house always wins in the end.

    The Slow Burn

    Relapses fade, but the damage doesn’t. Inch by inch, it eats. You don’t need a flashy MRI to prove it you can feel the slow rot in your bones, your mind, your will. This is SPMS: the bastard’s long game.

    The Quiet Conquest

    For some, there’s no drama, no storms, no sudden drops. Just a slow, relentless tightening of the vice. That’s PPMS: the quiet predator. It doesn’t roar, it whispers while it strangles.

    And then there are the ghost forms: so-called benign (which feels like a cruel joke) or the malignant that slams into you like a train.

    What These Labels Hide

    • Flux & Overlap: The lines aren’t walls. You slide, bleed, convert. Boxes aren’t boundaries, just suggestions.
    • Emotional Punch: Being told “you have PPMS” is like being handed a death sentence dressed up in medical Latin.
    • The System’s Lens: These labels exist for trials, drugs, and insurance companies. They don’t guide your daily grind.
    • Your Identity: To outsiders, you become the acronym. But you are not “SPMS.” You are a person dragging a monster.

    My Hope, My Roar

    These categories might help doctors, but they don’t define us. If MS insists on giving me a label, I’ll twist it into something else. I’ll call it by my words: intruder, war, burn, conquest.

    Because at the end of the day, there isn’t four MSes. There’s one beast, swapping masks. Today it’s relapse and remission, tomorrow it’s slow suffocation. Same predator, different costume.

    So when the next shiny study lands new drug, new vitamin, new miracle—I check the fine print. Who are they studying? “Active MS”? “Early RRMS”? The rest of us watch from the side-lines, left holding the bill.

    I roar because I’ve been there. I’ve seen the trenches. I’ve lived beyond the tidy labels. And if MS dares to name me, I’ll name it back with rage, with metaphor, with gallows humour.

    Afternoon AI Thought: MS has “four types,” they say. I say it’s one predator with a wardrobe problem today a wolf, tomorrow a vulture, always the same teeth.

    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