Multiple sclerosis is My Living Hell

mental health

All posts tagged mental health 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.

    Well, it’s another Saturday. Or is it Wednesday? Could be 2017 for all I know – time stopped making sense around the fifth episode of brain fog this morning. The weekend’s here, apparently, and so am I. Unfortunately.

    Picture this: I’m sitting here, staring at my endless to-do list, so knackered my spoons have buggered off and left a note saying, “Back in a decade, maybe.” Energy: zero. Motivation: less than zero. The only thing working properly is my ability to screw things up and get it all wrong, which, let’s be honest, I’ve always excelled at.

    Sometimes I think the best option is just to switch myself off and power down for a few weeks, like a dodgy PC. Not because I’m dramatic (okay, a bit), but because MS reality is like living in permanent airplane mode – you’re still technically on, but none of the good stuff’s working.

    The fog in my head’s so thick, I need a lighthouse to find my cup of tea. My eyes are so light-sensitive, I’m basically a reverse vampire, and my hearing is putting on a pantomime of its own. Tinnitus is mercifully on its lunch break, but the vagus nerve is still auditioning for Cirque du Soleil: pins, needles, left jaw spasms, the works. My hands and feet are staging a static electricity rebellion.

    It’s funny how time just morphs from one week to another, and then into another year, another decade. Memory? Gone. Smells trigger more nostalgia than actual memories now, which is probably for the best. Who wants to remember the good old days anyway? They probably weren’t that good, I just had more spoons.

    Honestly, I haven’t felt this rough since Thatcher was on the telly and petrol was a quid. For me, Christmas is just more days blending into more days, full of pain, unreality, and brain malfunction. But hey, happy holidays to the rest of you – may your synapses fire as intended and your spoons stay polished.

    Sending peace, healing, love, and light to everyone, regardless of your state of mental decay. Don’t hold your breath for a blog post – I’m working on the “spoken blog” tech, but brain fog has other ideas. Maybe by next Christmas I’ll have it sorted. Or maybe I’ll forget I ever started. Who knows? Not me.

    Cheers.

    If AI could recommend a solution, it would say: “Have you tried turning yourself off and on again?” Sadly, I’m stuck on a loop, but if anyone invents a reboot button for MS, I’ll be first in the queue. Until then, it’s just me, my spoons (missing in action), and the eternal question: “What day is it again?”

    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.

    Intro The Work and the Shoot

    There’s wrestling on the telly, wrestling in your head, and then there’s the clusterfuck called “real life.” I should know 66 years on the mat, progressive MS in my corner, and the cosmic booker never hands me an easy storyline. But here’s the question nobody wants to answer: Is life itself just one big work? Is reality just kayfabe with worse writers and no ring ropes to hold onto?

    Wrestling as the Mirror

    Wrestling’s the purest metaphor for this simulation we call the world:

    Good guys turn heel. Heels turn hero.

    Storylines recycle, but the pain’s always real.

    The crowd thinks they know what’s happening, but only the wise spot the swerve.

    It’s all run by big suits in the back just like life.

    Sometimes, the only way to get out of bed is to shoot straight with yourself, even when everything hurts and the ref’s counting slow.

    Reality Is the Work

    If you’ve survived chronic illness, lost friends, or just watched a week of British news:

    The politicians are running the angle. The media’s cutting promos. The “healers” and “preachers” are just the latest gimmick.

    We’re all being worked. The trickster’s in the booking committee, and the only thing real is the bruises you carry out of the ring. The rest? Cheap heat and reruns.

    Life Is the Real Shoot

    Now and then, someone goes off script like Bobby “The Brain” Heenan with a live mic, or Raven cutting a promo that breaks the fourth wall. That’s what I’m doing now. That’s what every soul with a voice has to do: call out the bullshit, refuse to play along when the angle gets too cheap.

    MS is the heel manager in my life. The doctors are the refs who never see the low blows. But I get up, every time, even if it’s just to cut another promo from bed. That’s the only way to stay in the match.

    The Great Unmasking

    What’s left when the lights go out and the fans go home?

    The anti-heroes, the tricksters, the weirdos, the kittens at ringside.

    The truth that everyone gets worked, but the real legends are the ones who know it and laugh anyway.

    Life’s a work. Wrestling’s real. The only kayfabe left is pretending you don’t know the difference.

    Warlock Dark’s Final Bell

    To everyone out there suffering, fighting, or laughing through the pain welcome to the real main event.

    Pick up the mic. Call out the frauds. Suplex your demons. And remember: The only ones who lose are the ones who never get back up.

    And if you see Sting in the rafters, give him a nod. He knows the score.

    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.

    Most people especially the ones who don’t have MS and cheerfully explain MS to you like they’ve swallowed a medical encyclopaedia still cling to this ridiculous nursery-school belief: “MS is one disease.”

    It isn’t. It never has been. It’s a label slapped over a whole family of neurological disasters that behave nothing alike. And if you live with it long enough, you realise you’re not dealing with a condition you’re living with a cast of unpredictable lodgers who take turns smashing up the inside of your skull and spinal cord.

    This is the part doctors rarely say out loud. This is the part patients live every day.

    The textbook MS and the real MS are barely on speaking terms

    The Central Nervous System is basically a giant electrical wiring system. MS is what happens when your immune system has a tantrum and strips the insulation off random bits of that wiring. Exactly which wires get stripped determines which part of your life goes to hell this week.

    Lesions in the optic nerve? Congratulations, you’re going blind today. Lesions in the cerebellum? Hope you didn’t want balance or coordination. Lesions in the cord? Enjoy the spasms, numbness, bladder mutiny and “legs made of microwaved custard.”

    And here’s the kicker: the pattern is different for every single one of us.

    That’s not spiritual nonsense. That’s not me being poetic. That’s straight from neurology research. MS is wildly heterogeneous meaning two people with the same type of MS can have completely different lives, symptoms, triggers, progressions, side-effects, and outcomes.

    This is why the neat categories — RRMS, SPMS, PPMS — feel more like filing instructions than actual representations of lived reality.

    My lived experience is mine — not a universal template

    Everything I say here is my MS, not yours, not your neighbour’s, not your cousin’s. We share a diagnosis but we’re not living the same disease.

    Some of the strategies I’ve used over the years have helped me survive and even claw back some functionality. That doesn’t mean they’ll help everyone. Nothing in MS is universal — except unpredictability.

    Personalised approaches help some. Pharma helps some. A mix helps many. And sometimes nothing bloody works and you just white-knuckle your way through the day.

    That’s the truth no one puts in the brochures.

    The tyranny of the “average patient”

    Modern medicine loves averages. Clinical trials, treatment guidelines, risk profiles — all built around mythical median humans who don’t actually exist. Meanwhile, real people have real bodies with real quirks, comorbidities, sensitivities, traumas, histories, genetics, environments, and chemical tolerances.

    I’m one of the ones who doesn’t fit the mould. You probably are too. That’s why you’re reading this.

    Over the decades, some meds have helped me. Others have flattened me. Some were supposed to “improve my quality of life” and instead set me on fire from the inside out. This isn’t anti-science. It’s anti-stupidity. It’s refusing to pretend that one-size-fits-all treatment works when the disease doesn’t behave in one size or one shape.

    The invisible illness problem

    Half of MS happens in places other people can’t see.

    Fatigue that feels like you’ve been drop-kicked by gravity. Brain fog thick enough to lose your own name in. Nerve pain that lights you up like a faulty Christmas tree. Autonomic dysfunction that flips you from stable to collapsing in seconds. And everyone else sees… nothing.

    Invisible suffering becomes unbelievable suffering in the eyes of people who only trust what they can see.

    This is why the world claps your good days and interrogates your bad ones: “You were doing so well!” Yes, Susan, because I had 48 hours of functioning nerve conduction. Don’t get excited.

    Living data vs. clinical data

    Research tells us MS is unpredictable and variable. Patients tell us exactly how unpredictable and how variable — in ways doctors don’t always clock because they don’t live inside the burning building.

    Lived experience is data. Messy, subjective, inconvenient, but absolutely real.

    And we need more of it.

    Not to replace medicine, but to expand it. Not to reject pharma, but to refine it. Not to preach cures, but to share reality.

    Why personal regimes become survival, not rebellion

    Call it alternative, natural, holistic, personalised — whatever label makes you least likely to be shouted at online. For many of us, building our own systems is not ideology, it’s necessity.

    When conventional medicine hits its limits, you start tweaking your own dials:

    Food. Stress. Triggers. Supplements. Sleep. Movement. Emotional processing. Gut health. Breathing. Calming the nervous system so it doesn’t leap off a cliff.

    This isn’t magic. This isn’t woo. This is survival engineering.

    Personal experimentation is how many MS patients find the thing that makes the next day slightly less catastrophic.

    It’s not a cure. It’s not universal. It’s survival. And survival, in a disease like MS, is an art.

    The honest bottom line MS is not one disease. It never was.

    It’s a messy spectrum of neurological chaos wearing a single label because scientists haven’t yet built a microscope fine enough for the truth.

    Until then, we keep talking. We keep writing. We keep comparing notes. And we keep dragging the reality of MS out of the shadows where the polite medical pamphlets prefer to hide it.

    If this helps someone feel a bit less alone in their personal version of hell, then the writing was worth it.

    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.

    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.

    By Warlock Dark — The Kittens-of-Doom-Tolerated Version

    Let me tell you something most doctors won’t say out loud because it ruins the tidy little world they live in: there is no such thing as “multiple sclerosis”. Not as one thing. Not as one condition. Not as one neat textbook chapter.

    What exists out here, in the trenches where the real people live, is millions of different versions of MS one for every poor sod whose nervous system it chose to torment.

    My MS isn’t your friend’s MS. Your friend’s MS isn’t your neighbour’s MS. And your neighbour’s MS isn’t the version your doctor read about at medical school 30 years ago before caffeine, stress and pharmaceuticals turned their brain into soup.

    That’s the real problem. And that’s what nobody talks about.

    So today I’m talking about it.

    Because this isn’t theory this is my lived experience, and the lived experience of every chronic illness warrior out there who’s been patronised, misdiagnosed, over-prescribed, under-listened to and told to “trust the science” while their body is doing a completely different opera in a completely different key.

    Your MS Is Not My MS And That’s the Heart of the Issue

    I’ve been dealing with this beast for years. And it didn’t take long to realise the obvious truth: MS behaves differently in every single person.

    Not a little bit differently but massively, dramatically differently. To the point where two MS patients in the same postcode can look like they’ve got completely unrelated illnesses.

    One gets fatigue. One gets spasms. One gets cognitive collapse. One gets mood surges. One gets vision problems. One gets pain. One gets none of the above. One gets all the above. One wakes up feeling normal and collapses by afternoon. One collapses in the morning and rallies at night like a nocturnal raccoon.

    And somehow… the medical system insists it’s all the same condition.

    It’s not.

    It never has been.

    It never will be.

    MS is not a single disease it is a collection of personalised neurological catastrophes wearing the same name tag.

    Every nervous system reacts differently. Every immune profile is different. Every flare is different. Every trauma history matters. Every hormonal cycle matters. Every bit of diet tolerance matters. Every gut problem matters. Every tiny bit of stress matters. MS is a fingerprint, not a formula.

    This is why the “one size fits all” approach to treatment falls apart before it even starts.

    Doctors Don’t Live in Our Bodies That’s the Core Failure

    Let’s be blunt. Doctors don’t have MS. They don’t wake up with burning nerves, spasming muscles, brain fog thick enough to butter bread with, or the charming experience of waking up in a body that refuses to obey basic commands.

    They don’t know the sudden dread of a flare. They don’t know the nights where the pain turns you into a sleepless, twitching banshee. They don’t know the fear that comes from a throat that stops working, or a leg that decides it’s clocking off for the day.

    And because they don’t live it, they can only treat it academically. Which works about as well as giving someone directions to a town you’ve never visited.

    Medicine needs to stop pretending everything is predictable. It’s not. The only predictable thing about MS is its unpredictability.

    Why Natural Medicine Often Works Better Than Pharma The Truth Nobody Likes to Hear

    Let me be clear: this isn’t anti-science. This is anti-stupidity. There’s a difference.

    I’ve done the pharma route. I’ve swallowed the pills. I’ve taken the injections. I’ve sat in the chair for the infusions. And I’ve been in the hell where you take one drug, and then three more drugs to counteract the first drug, and then another drug to deal with the side effects of the side effects.

    It’s not a treatment plan. It’s a chemical hostage situation.

    Polypharmacy wrecks people. Not sometimes often.

    It makes fatigue worse. It makes cognition worse. It messes with the gut. It interacts with itself. And before you know it, you’re a walking medicine cabinet with a pulse.

    Natural medicine? It does something the pharmaceutical world still struggles with:

    It treats the person, not the “average patient”.

    That’s why medical cannabis changed my life. THC has been more stabilising for me than a decade of prescription chaos.

    Lion’s Mane helped my cognition when nothing else did. Vitamin D and magnesium did more for my mood and nerves than SSRIs ever could. Some things worked. Some things didn’t. But the point is: they worked according to my biology, not a clinical trial with 500 strangers.

    That’s the golden rule chronic illness patients learn the hard way:

    There is no universal cure because there is no universal body.

    Everyone’s Illness Is a Different Monster — Even with the Same Name

    Here’s the part doctors don’t like:

    Two people can have “the same illness” and need completely different treatments, foods, drugs, supplements, or habits.

    Your body might be able to tolerate one thing that destroys someone else’s stomach. Your nervous system might benefit from THC while someone else gets overwhelmed by it. You might thrive on Lion’s Mane while someone else feels nothing.

    That’s not placebo. That’s biology. Neurology is personal. Immunity is personal. Trauma is personal. Symptoms are personal. So treatment has to be personal too.

    No neurologist’s office in the world is set up for this kind of nuance. But it’s the only approach that works.

    What the System Doesn’t Understand But Patients Do

    The real experts are the ones living with the condition.

    Not the clinicians. Not the researchers. Not the textbooks.

    The people who wake up inside these bodies every day.

    We understand patterns doctors miss. We recognise triggers before blood tests do. We notice neurological shifts before MRI scans catch up.

    We know when food wrecks us. We know when weather hits us. We know when stress snaps something inside us. We know when the meds help — and when they poison.

    And the reason we know is simple:

    We don’t have the luxury of being wrong.

    Doctors can be wrong and move on. Patients pay the price.

    Your MS, My MS, and the Future of Chronic Illness

    Here’s the truth I wish the world would catch up to:

    MS should be treated as dozens of sub-types, not one umbrella diagnosis.

    If medicine ever wants to improve MS outcomes, it needs to:

    personalise treatment

    map symptom patterns

    respect lived experience

    stop treating outliers as “exceptions”

    integrate natural therapies

    merge medical science with actual patient data

    stop pretending everyone’s body reacts the same

    People aren’t machines. Bodies aren’t standardised. And chronic illness doesn’t follow rules.

    You want real progress? Start listening to the people living the reality — not just the ones writing the guidelines.

    My Conclusion? Simple. Brutal. True.

    Your MS is yours. Mine is mine. Nobody experiences the same version, and nobody should be treated like they do. Doctors need to understand this. Medicine needs to evolve. And patients deserve to be treated as individuals, not numbers on a chart. Until the system catches up, we keep learning our bodies the hard way — one flare, one insight, one victory at a time. And honestly? Lived experience isn’t just “valuable”. It’s the only thing that actually saves lives. 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.

    There are days with MS… and then there are those days the days where your entire nervous system decides to re-enact a flea circus on a hot tin roof.

    So let me paint the scene for you:

    I Am a Kitten. A Flea-Infested Kitten.

    Not a majestic panther. Not a sleek predator. No. A tiny, confused goblin-cat with an arse like a bonfire and fleas having a rave on my spine.

    I’m sprinting around the imaginary room crashing into furniture, tripping over nothing, having a full cosmic meltdown because the fleas/MS won’t stop chewing on every nerve ending like they’ve paid for an all-you-can-eat buffet.

    Lights flickering. Shadows being weird. Brain fog thick enough to butter toast with. Hallucinations just to keep things spicy.

    Everything MS can throw at me it throws all at once.

    And there I am, this poor invisible kitten of doom, doing laps like I’m possessed by 15 demons and a Red Bull sponsorship. Things fall off shelves. Air becomes lava. Reality breaks down like a cheap knock-off mirror in a funfair.

    MS as Fleas

    Imagine your entire body itching in places that don’t exist. Imagine the fleas having meetings about unionising. Imagine scratching your own soul because everything feels wrong.

    That’s MS. Tiny bastard parasites gnawing at the wires of your meat suit.

    The Choice

    So here’s the question:

    Would I rather be a flea-infested kitten with an itchy bum? or Would I rather be a 66-year-old strapped to a power chair with MS chewing on my circuits?

    Answer?

    I’ll take the MS and the grumpy realism, thanks. At least I don’t have to lick my own arse to feel clean.

    Fleas? No chance. I’ve been bitten enough by life as it is.

    Besides a kitten with fleas is chaos. A man with MS in a power chair? That’s controlled chaos. A battle-hardened wizard rolling through hell’s hallway giving death stares to anyone who gets in the way.

    Moral of the Story

    MS is the fleas. You’re the kitten. Some days you sprint. Some days you hide. Some days you crash into the coffee table and take the lamp with you.

    But you’re still here. Scratching. Surviving. Snarling. And somehow laughing at it all.

    Because the alternative? Nah.

    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.

    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.

    Caps Lock was on. Fitting, really because this weekend deserves to be screamed.

    It’s been one of those days where tinnitus isn’t just a sound; it’s a blade, slicing through each ear like a mad surgeon practising on live flesh. My neck and throat are staging their own version of The Exorcist full-body spasms, tongue going numb, and that delightful creeping thought: “what if I swallow it?”

    Add a bit of breathlessness, some joint pain in every bloody bone, and the cold biting like a pack of wolves, and you’ve got the full package. Heating? Too expensive. Living? Apparently optional.

    Everything costs too much, even pretending to care.

    The one bright thought in this black pit? Magnet fishing. Yeah, you heard me. A rope, a magnet, a canal and maybe a bit of hope stuck to the end of it. I’ve been watching Wim and his magnet-fishing crew on YouTube absolute legends. Amsterdam, Rotterdam… the dream. Wim’s laughter, their ridiculous finds, their camaraderie it’s like a brief holiday from hell.

    And the pink cake challenge? I’d kill to try it. But I can’t. My diet’s so stripped-down it makes a monk look decadent. No meat, no dairy, no fat animal or vegetable. Even coconut oil’s on the blacklist. My body’s become a warzone where food’s the enemy. I’m wasting away, a ghost of myself.

    This afternoon I lay down and held Albertine my one anchor in this chaos. She’s the reason I’m still here, truth be told. When your brain starts glitching like a bad signal and fear crawls up your spine, a hug can feel like the last light in the storm.

    I’m slipping, I know it. The fatigue is monstrous. My eyes ache, the light stings, and sleep’s a cruel joke. Still, I keep trying. Keep clawing forward, because what else is there?

    I’ve even done a podcast raw, unfiltered, recorded between breakdowns. No one’s listened yet. But maybe one day they will. Maybe they’ll understand what it feels like to live like this half-human, half-howl.

    Last night, I dreamt of Yopi in a baby wheely chair. No idea why. Probably my brain finally imploding. Still, better that than another night of endless bathroom trips. I’m tired the kind of tired that lives in your bones. But I’m still here.

    Still fighting. Still swearing. Still darkly laughing. Because that’s all I’ve got left and I’ll use it till it burns out.

    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.

    Yes, folks nxt week it’s going to be mind-bending. I’m starting a weekly podcast. A weekly rant. A weekly therapy session disguised as sarcasm.

    And the first episode? My favourite subject: wheelchair batteries. You know, those little lying bastards that promise 14 miles on the label but wheeze to a stop after one? Then you’re stuck halfway to nowhere, looking like an abandoned mobility meme.

    It’s going to be short, sharp, dark, and real about MS, mental health, and the ridiculousness of surviving the system one dead battery at a time.

    So yeah, that’s My Living Hell. No filters. No fake smiles. Just the truth, swearing included.

    🎧 Episode 1 drops next week. If you’ve ever been stranded, broken, or laughing through the pain you’ll fit right in.

    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
    enter image description here