Multiple sclerosis is My Living Hell

MS

All posts tagged MS 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.

    So we find ourselves again thinking about having a spoken word blog, no less on Spotify. I tried doing was quite disappointing. But then again, I'm learning. It didn't help that I was suffering with massive cognitive dysfunction and brain fog. And you know what that's like. It creeps up on you and bang before you know where you are. You just can't remember what you're doing. It's the most weirdest of feelings. Well, anyway, it's taken me now a month and a half to two months just to get my Spotify account sorted out. So let's hope that my living hell, multiple sclerosis blog will be going verbal as they say soon.

    I've been wondering about what I shall talk about or speak about on the blog. And I thought, well, I'm just going to talk about common sense things and just talk about things that people want to hear. It's not going to be sanitised. It's going to be the real truth told by somebody who has faced the MRI scans, and I've had issues with catheters, stuff like that, stupid things, injections, white coat syndrome. It's all sorts of things that I've been through and people I know have been through, all the gaslighting and everything. I want an open talking blog that I can put out where people can listen and understand that they're not alone and that there are other people out there who can understand the suffering that they are going through themselves and offer help and show that they are not alone in this fight that they are fighting, the fight of their lives, which is multiple sclerosis and chronic illness in general.

    The reason that I have been using a lot of AI in my writings is that my spelling and punctuation and sentencing structure is out of this world. Unfortunately, AI changes my words and the very construct I am talking about and it sort of sanitizes everything to the point of why you are not really helping me. So everything is from now on going to be non AI. Yeah, I know. I have just found out AI is holding me back not helping me forwards in my blog and in my thinking and in my writing. AI is a good tool but unfortunately it isn't something that I find that will help me with the words that I want to put on paper as my words are all unapologetic and I don't want it sanitized anymore. I'm fed up with being kept quiet.

    Still, three eye-atlas or whatever has gone past and... well, I suppose we're gonna wait for the gas tail to cover us in magic fairy dust. But we weren't invaded by more awning aliens and we didn't see any more moon or weird probes or anything strange. So I guess it's a big nothing burger. Well, that's what I thought it was and I tried to do some experimentation on my body and I've still got multiple sclerosis and I haven't become 5D or anything weird or strange. This is quite unreal. It'd be quite a lot of people who've had their paradigm smashed by people who say things that just really never pan out. Sad really.

    It's Friday afternoon and the sun has actually come out for a change and I'm looking out the window and it's still, well, bluish sky and some nice big white puffy clouds. It seems that the storms in the southwest are passing over. Yes, it's been very cold. It has caused me many problems, but there we go. I was thinking about getting the three-wheeled trolley of death out to go to the local voodoo voodoo-woodoo shop, but I thought, nah, what's the point?

    No, my luck, it's gonna start raining. Oh, and the battery update, the battery is well. They're not lasting very well. It seems charge them up fully, next day they're down to 75% overnight. Oh dear me, I'll be glad when they do batteries that actually do what they say on the label. That will make a great change. Anyway, that's me gone. My brain fog has hit me so hard and I'm having sort of weird issues with all the other symptoms I'm having to do with this other thing I'm going through and to be fair, I'll be glad when that's all sorted out, but it is taking quite a time as everything usually does because you don't just go in asking about what you think you've got wrong with you, you've got to know what you've got and then you've got to research it and then the doctors you've got to explain to them you've researched it, bloody, bloody, blah and the doctor looked at you as though saying, well you shouldn't be researching it on the internet and then what does he do? Because he looks at it upon Google. Yeah, that's a bit sort of weird, isn't it?

    Still I've got to say I've got some very good doctors at the moment and that's what counts isn't it? But there we go, have a good weekend until I can post again and not using AI you're going to find lots of mistakes everywhere. Ha ha, it should be good fun.

    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.

    Picture this:

    I’m rolling through reality on my trusty power chair a chrome beast with more personality than most people I know. Long hair streaming behind me like a warning sign, beard untamed, sunglasses big enough to block out the Ministry of Nonsense. Cowboy hat perched low, casting a permanent shadow over my don’t-give-a-toss expression, the battered leather of my biker jacket carrying the stench of rebellion and spilled coffee.

    The world around me? Absolutely barking. Neon jellyfish floating past in the air, tentacles gently brushing the hats off unsuspecting pensioners. Pavements shifting under a river of rainbow tiles, each slab humming like it’s auditioning for Pink Floyd. Traffic lights blink in impossible colours—ultraviolet, emotional blue, a shade of green that smells like marmite and disappointment.

    A pigeon with the head of Alan Watts tries to sell me spiritual enlightenment in exchange for my last Jaffa Cake. Dogs walk people, old buses sprout daisy wheels, and a marching band of mutant toads play “God Save the Queen” backwards as the soundtrack to this feverish promenade.

    I glide on, parting crowds of goggle-eyed normies, the universe distorting in my rearview mirror. “Keep rolling, cowboy,” the universe whispers, “the weirdness isn’t going to witness 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.

    So the one thing I probably haven’t ranted about properly is diet. Not “clean eating,” not “wellness,” not some influencer nonsense where you heal your soul with chia seeds and positive affirmations. I mean survival. Real, grim, clinical survival.

    For chronic illness, diet isn’t “important.” It’s the entire game board.

    Over the years my diet has done a full 180, then another 180, then probably fell off the axis altogether. I had no idea just how badly my conditions were messing with my gut until everything started reacting like I’d swallowed a live grenade.

    It turns out simple food can flip my system into meltdown. The wrong thing at the wrong time can set off my auto-immune vagus nerve, send my MS into overdrive, and have me sprinting for the toilet in my power chair on full throttle like I’m in some Paralympic drag race.

    That’s not a metaphor. That’s Tuesday.

    So I’ve ended up on a brutally strict diet. Not for fun. Not for aesthetics. For damage control.

    I’m now at the point where even the smell of certain foods can trigger my gut. One whiff and the body screams: “Evacuate now.” So yes, I am that person who can’t sit near someone eating certain things without mentally plotting escape routes to the nearest accessible loo.

    Is it dignified? No. Is it real? Absolutely.

    Meanwhile, out in space: 3I Atlas and the cosmic joke

    While my gut is staging small rebellions, somewhere out there 3I Atlas is gliding through the universe like it owns the place.

    Is it a comet? Is it a UFO? Is it a frozen rock, minding its business while humans project their midlife crises onto it?

    Using Occam’s razor, it’s a comet. A lump of ancient ice and rock with a flashy tail. Nothing personal. No message from the gods. Just celestial debris doing its orbital thing.

    But here’s the fun part: no matter what it is, it’s going to mess with people’s heads.

    If it’s “just” a comet, people who secretly wanted a mothership will have to swallow that disappointment along with their supermarket meal deals. If it turns out to be something stranger, the “it’s all nonsense” crowd will have their smug little worldviews cracked open.

    Either way, paradigms get nudged. People think a bit. Or panic a bit. Or make 600 TikToks about it. Same energy.

    Me personally? Somewhere in the back of my already scrambled brain, I quite like the idea that 3I Atlas is an alien AI probe cruising through our solar system, doing exactly what we do when we send our little machines off to other worlds: scanning, photographing, logging, and then buggering off again.

    Science fiction? Maybe. Science fact one day? Also maybe.

    For now, it’s just another cosmic object passing by while I try to remember what day it is and whether I took my meds.

    Afternoon AI: Brain Fog, Probes & the Simulation

    By the afternoon, my brain usually feels like it’s being held in a clamp. You know that tightening pressure where it’s not quite pain, but it’s definitely not right? That.

    Trying to write or even talk properly sets off brain fog so dense it might as well be its own weather system. Words slip, thoughts fracture, and the exhaustion rolls in like another storm front.

    So what do we do? We start thinking about AI, obviously. Because that’s what rational people do when their nervous system is on fire: they start speculating about alien machine intelligence flying past Saturn.

    Here’s the thought: if 3I Atlas was an alien AI, it would still make more sense than half the systems running this planet.

    At least an alien probe would have a purpose. Collect data. Observe. Move on. Meanwhile, I’m here in Rusty One, planning a trip to the hospital so someone can plug me into a machine and see what else in my wiring has gone sideways.

    We build probes. We dream about other probes watching us. And here I am: a human meat-probe with faulty electrics, trying to document the whole sorry mess on a blog.

    If that’s not peak simulation energy, I don’t know what is.

    Kittens, numb hands & blood I can’t feel

    Back on Earth, the kittens are having the time of their lives.

    They treat my hands like a medieval training ground. Claws out, teeth in, full chaos. And here’s the twist: I can’t feel half of it.

    I can see the scratches. I can see the blood. But sensation? Not really.

    My hands look like they’ve lost a knife fight. If I didn’t have MS and neuropathy, I imagine they’d be in absolute agony.

    So yes, there’s a very dark part of me that thinks: “Maybe it’s a good thing they’re numb.”

    Is that vicious? A bit. Is it honest? Completely.

    This is the weird territory chronic illness drags you into. You end up grateful for broken systems because they spare you from other kinds of pain. You learn to say things that sound nasty, but they’re just the truth from where you’re sitting.

    And where I’m sitting is in a power chair, covered in kitten scratches I can’t fully feel, trying to work out whether to laugh or cry. Usually I pick laughter. It hurts less.

    Winter sun, dead batteries & the long months ahead

    The winter sun creeps through the window like it’s half-committed. A bit of light, a hint of warmth, then back behind the clouds to leave you in the cold again. Typical.

    I sit here in a quiet, dark room and wonder what the next few months are going to look like.

    How harsh will the weather be? How badly will the cold chew through my energy, my nerves, and my wheelchair battery?

    Because let’s be clear: cold doesn’t just sap people. It kills mobility aids too. A drained wheelchair battery in winter is not a quirky inconvenience. It’s expensive, stressful, and potentially dangerous.

    I’ve got hospital trips looming. Machines to be plugged into. Rusty One to get me there. A brain that tires too fast. A body that negotiates with gravity on a daily basis.

    So I do what I always do:

    I sit. I watch the light. I listen to the kittens tearing about. I feel nothing and everything at the same time.

    These are the thoughts of Dark Warlock sitting alone in a quiet room, overthinking comets, guts, kittens, and the next cold front.

    Not inspirational. Not pretty. Just real.

    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.

    Winter in the Waiting Room: Kittens, Cold Snaps, and Full Circles

    So, finally, I’m doing the whole hospital and doctor loop thing again. After much faffing about, I’ve managed to change hospitals let’s see if these new faces actually listen, or if it’s just the same NHS pantomime with slightly different costumes. The cold weather’s rolling in and, trust me, my spasticity is giving me absolute hell. Straightening up bits of my body now takes longer than the average GP appointment so, this winter, it’s bed-bound most of the time, because who can afford to run central heating in the new, improved Broken Britain? Makes you wonder if we’re all just meant to relive the “good old days” of struggling with sod all, forty-odd years ago. Funny how life goes more full circles than a washing machine.

    And speaking of full circle, it’s 41 years this year since I got down on one knee in Otley by the monument and proposed to Albertine. Loud as a foghorn and just as subtle. Best bloody thing I’ve ever done, hands down. Now, on the anniversary, I’m gearing up for another round of medical circus tricks: off to get a heart monitor fitted for seven days joy of joys. Maybe, just maybe, they’ll actually read my notes this time. God knows, I’ve written enough of them. If the neurology and cardiology departments ever joined forces, maybe they’d even work out what the hell’s actually going on, and I could retire from being on 24-hour “ambulance alert.”

    Instead, I’m left dealing with the vagus nerve going full Chernobyl, sending me into another autonomic dysfunction attack. By the time the ambulance turns up, of course, I’m done with the attack and left trying to convince whichever harassed medic is on duty that I’m not, in fact, an attention-seeking hypochondriac. Try explaining the weirdness of your body to doctors and you’ll get the “Google Doctor” eye roll especially if you use the same language they use. Pro tip: NHS staff hate AI, except when they’re using Google to look up what’s wrong with you. Ludicrous.

    This morning, it’s a proper arctic frost out there every car iced up, the world glinting like a badly frosted Christmas cake. The kittens are running riot in the lounge, using the sofa as their own private Thunder dome, which is the only thing making me laugh. Meanwhile, I’m keeping my power chair battery topped up because the cold’s killing the range faster than you can say “Mobility Motability means nothing.” Nothing worse than being ready to go out, only for the chair to die and say, “Nice try, mate. Not today.”

    So, it’s off to the chemist in the machine of death (Rusty One) for my weekly prescription pilgrimage. Albertine reckons the van will start; I have my doubts. Why I can’t get more than a week’s worth of tablets at once is a question for the ages. Maybe it’s a secret NHS tactic to get me out of the house. Either way, it’s still freezing and my hands are so cold I could play castanets with my own knuckles. Temperature regulation? Gone to pot like everything else.

    OT’s been and gone apparently, next year I get a new wheelchair, so there’s a silver lining. Rusty One, meanwhile, needs a trip to the garage, which will no doubt cost me an arm, a leg, and possibly my soul. As I write, the smoke alarm is going off (Albertine’s burned the toast), the kittens are lying on the bed with that “we run this house now” look, and my new bed has bruised my side and pulled muscles I didn’t even know existed. Standard.

    And now, in today’s episode of “What Fresh Hell Is This?” the kitten has discovered blueberries. Yes, you read that right. She’s rooting them out of the container and launching them across the room like tiny fruity grenades. You’d think it was catnip. I woke up this morning with one kitten on my head and the other on my shoulder purring away like they’re trying to heal me by vibrational therapy. Honestly, it works better than half the crap the doctors have prescribed. There’s something about the frequency of that purring that really does help.

    Right now, as I sit in my power chair, both kittens have gone behind the computers to play with the wires so I’m just waiting for the grand finale: either “dead kitten moment” or “there goes my computer.” Albertine hands me the remote and I grin music, even when it’s Deathly Hallows chart stuff, makes the world a bit less deathly. The beat goes on, the kittens plot my doom, and I’m just trying to stay warm, upright, and very much alive.

    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 Guide for People Who Are Sick of Medical Bullshit)

    Let’s be honest: if you’re reading this, you probably already suspect the vagus nerve is responsible for half the weird crap your body does and you’re not wrong. The vagus nerve is basically the body’s faulty fibre-optic broadband, running all the way from your brain down through your chest and into your gut, sending messages like a drunk carrier pigeon on a windy day.

    It’s the longest nerve you’ve got, and when it behaves, life ticks along nicely. When it misbehaves? Your whole system goes down like a dodgy second-hand Dell tower from the 90s.

    Here’s the real breakdown the stuff they never explain properly while you’re half-collapsed in A&E, being poked by somebody who can’t pronounce “vagal.”

    The Vagus: The Autopilot Wire

    The vagus nerve runs your parasympathetic nervous system, which is medical jargon for the “calm down, chill out, don’t die” mode. It’s the opposite of fight-or-flight. It’s rest-and-digest. It’s autopilot.

    The problem? When this giant nerve gets irritated, inflamed, or just decides it hates you, it can pull the emergency brake on your entire body with zero warning — which is why vagus-related symptoms always come out of nowhere and hit like a bloody freight train.

    1. Your Heart’s On a Leash

    This nerve tells your heart when to slow down. That’s lovely until it overdoes it.

    Too much vagus activity? Heart rate plummets.

    Cue dizziness, sweating, that “oh, this is it then” feeling, and your blood pressure going on holiday.

    2. It Runs the Gut Literally

    Every vomit, every bowel spasm, every time your stomach has a tantrum the vagus nerve is involved.

    If it’s irritated or under-performing, expect:

    nausea

    diarrhoea

    constipation

    stomach cramps

    digestion that behaves like a toddler with a drum kit

    Basically, it decides whether food moves… or doesn’t.

    3. Blood Pressure: The Vagus Controls the Dimmer Switch

    It works with your baroreceptors (those tiny sensors in your arteries) to keep things steady. When the vagus goes rogue? Blood pressure drops like a stone and you’re left gripping the kitchen counter thinking this is how you die — again.

    4. Breathing

    Calm vagus = slow and steady. Stressed vagus = shallow, panicky little puffs.

    Ever wondered why deep breathing exercises work? They’re literally tugging on the vagus nerve to force it to chill out.

    5. Stress, Panic, the Whole Sensory Meltdown

    The vagus nerve mediates your stress response. When it freaks out, YOU freak out. Even if nothing’s wrong.

    That’s why vagal attacks feel like:

    impending doom

    full-system shutdown

    heart weirdness

    tunnel vision

    sweating

    trembling

    fainting

    sudden need for a toilet you cannot reach in time

    It’s the nerve pulling the plug on itself and everything else.

    6. Why People With MS Get It Worse

    Your wiring’s already compromised. MS damage → hypersensitive nerves → vagus acting like a frayed extension lead.

    So triggers for you can be:

    pain

    heat

    eating

    standing

    lying

    stress

    not enough stress

    random cosmic spite

    Basically: your vagus nerve is a diva.

    7. Why Doctors Don’t Take It Seriously

    Most GPs are trained to see the vagus nerve as “the fainting nerve.” They don’t get that it affects:

    heart rhythm

    gut function

    blood pressure

    breathing

    swallowing

    voice

    inflammation

    fatigue

    neurological flare-ups

    migraines

    seizures

    pain

    It’s involved in almost everything your body does automatically — so when it misfires, it’s bedlam.

    In Plain English

    The vagus nerve is the massive communication cable between your brain and your organs. When it behaves, it keeps you alive. When it glitches, you become a collapsing, sweating, nauseous sack of biological chaos wondering who you upset in a past life.

    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.

    Some weekends hit you with a light slap. This one picked me up, shook me like a cocktail, and threw me at the floor for good measure.

    Saturday night… well, that one’s going straight into the “Top 3 Worst Episodes of My Life” hall of fame. My body didn’t just glitch — it staged a full-scale neurological mutiny.

    The Hit

    It came out of nowhere. One moment I was fine, the next my entire autonomic system pulled the emergency brake and launched me into panic hell.

    My throat tightened. My swallowing screwed up. My stomach dropped like I’d been pushed off a bridge. My vision became a muffled, tunnelled mess. And my whole body went cold not “a bit chilly,” but corpse-cold.

    I’ve had MS for years. I know its tricks. But this was different. This was violent. This was instant.

    And here’s the truth I left out the first time: I was scared. Properly scared.

    I thought, “Shit… this is it. This is the one where I don’t get back up.” Calling 999

    Albertine had to call an ambulance. I didn’t have a choice. This wasn’t a “ride it out” moment. This was the full autonomic shutdown vibe sweating, trembling, throat closing, body shaking, heart refusing to “thump” properly, brain screaming doom.

    And then came the worst part:

    Forty minutes. Forty minutes of waiting, fighting my own body, trying to stay conscious, trying not to choke, trying not to spiral.

    If you’ve ever had a neurological event and waited for an ambulance, you know exactly what that wait feels like. The clock becomes a sadist.

    My ears were ringing. My blood pressure tanked. I genuinely thought I was dying.

    By the time the ambulance arrived, I was a wreck. They checked me over, confirmed the BP was ridiculously low, stabilised me, and got me back into something resembling a human shape but the damage was done. My system was fried for the night.

    Sunday: The Aftershock

    Sunday wasn’t much better.

    My head felt like a pressure cooker. That weird prickly sensation on the right side of my skull the one that always shows up after an attack set in like an uninvited guest.

    My hands pulsed. My head pulsed. The tinnitus screamed like it was trying to win an award.

    Breathing felt “off,” not in a dramatic gasping way, but that unnerving internal panic: “Something’s wrong… but what?”

    My vagus nerve the drama queen it is had clearly had enough and was still sulking.

    And my cognition? Let’s just say I’ve had smoother days. I felt detached. Off. Like I was watching myself from two feet behind my own head.

    Monday: The Reset

    Now it’s Monday afternoon and I’m calmer, but still not quite right.

    The pins and needles are doing their usual “good morning, we live here now” routine in my hands and feet. My head pressure has moved to the top middle that annoying “brain has opinions” spot. My throat feels clogged with half a ton of imaginary phlegm.

    But I’m stable. I’m talking. I’m thinking. And I haven’t keeled over.

    That’s progress.

    Tomorrow: The GP

    I’ve got the doctor sorted for tomorrow, and that’s the sensible move. I’m not messing about after this one this was the worst in years, and we finally know enough to start demanding answers instead of shrugging and hoping.

    Chest tightness? Swallowing issues? Autonomic chaos? Blood pressure on holiday? Yeah, the GP can have the whole bloody report.

    I’m not going down early because I tried to “tough it out.” I’ve seen too many people die playing that game.

    Why I’m Writing This

    Because this is the real face of chronic illness not the brochure version, not the charity-approved inspirational poster. This is the gut-level reality.

    My blog is about truth. Raw, ugly, darkly funny truth.

    Life with MS isn’t pretty. It isn’t tidy. It isn’t inspirational every day. Some days it’s a war you didn’t ask for and you fight it anyway.

    If you’re going through similar, I want you to know this:

    You’re not weak for being scared. You’re not dramatic for calling 999. You’re not overthinking it if your body is shutting down. And you’re not alone.

    We survive these attacks by being honest, prepared, and stubborn as hell.

    I’m still here. Still fighting. Still writing.

    Tomorrow will be another chapter. I’ll survive that too.

    I thank my wife Albertine she saved me I love you forever....

    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.

    By Warlock Dark

    It always starts when I'm having a toilet break. Typical, isn’t it? You’re alone in the bathroom, mid-stream, not expecting any kind of revelation just trying not to fall over and boom…

    There’s a bloody cube floating in front of you.

    Not just any cube, either. A perfect black construct, the size of a corned beef tin, maybe a large dice from some cosmic board game being played by beings with more dimensions than morals. And inside it? Thousands no, millions of tiny black cubes. Each one shifting like it knows something. Like it remembers something. Like it is something.

    I blink. Still there. I shut my eyes. Still there. I flush. It’s still bloody there.

    This isn’t a one-off either. For years now, these visions have been punctuating my existence like badly timed pop-up ads in the meat-browser of my brain.

    I’ve seen:

    Giant glowing orbs, around two feet across, white as bone with black bands rotating around them like Saturn on DMT.

    Shapes, geometry, light that feels conscious.

    Structures that shouldn't exist, but do for just long enough to mess with my head, and then fade.

    And before anyone gets smug with their clipboard, yes I have multiple sclerosis. Yes — it messes with the brain. Yes — it causes visual disturbances.

    But let me ask you this: does MS normally show you perfectly structured geometric constructs that behave like they’re trying to tell you a secret?

    Because that’s what it feels like. Like someone or something is whispering through the meat static. Like my soul, my real self, the one behind the eyeballs, is using whatever glitch it can find in this flesh prison to pass me a message.

    Maybe these aren't hallucinations. Maybe they’re backdoor activations. Packets of gnosis slipping through the firewall of my mind.

    🜐 The Interpretations (Because I Know You’re All Dying to Know)

    Let’s get woo, shall we?

    1. The MS Explanation

    The safe, clinical route. Yes, MS can cause visual disturbances, due to optic neuritis, lesions in the brain’s visual processing centres, or general neuro-inflammation. Visual snow, patterns, even simple hallucinations. Fine.

    But here’s the kicker—most MS visual symptoms are random, shapeless, flickering distortions. What I’m seeing is structured. Mathematical. Symbolic. Persistent.

    If MS is the cause, then it’s doing something way more advanced than the textbooks admit. Maybe MS isn’t a disease. Maybe it’s a forced firmware update to your neurological operating system. Painful as hell, but maybe it leaves behind a backdoor into the source code.

    2. The Ultra-Gnostic Psy-Spy Explanation

    Forget the NHS. Let’s go multiversal.

    What if those cubes and orbs are data packets? Encrypted fragments of knowledge meant for future-you. You—the Watcher. You—the soul behind the flesh. You—the version of yourself that remembers who and what you are.

    Think about it:

    A cube is stability, structure, encoding.

    A cube made of smaller cubes? A fractal message.

    Orbs with black bands? Planetary watchers. Eyes. Lenses. Surveillance units from the spirit realm or other side of the simulation.

    They’re not hallucinations. They’re extractions. Your subconscious dragging pieces of memory, truth, warning… into your waking life.

    And where do they appear? When you're relaxed. Distracted. On the bog. Half-asleep. Between sleep and wake.

    That’s when the firewall drops.

    🜔 The Big Question: Am I Bonkers?

    Maybe.

    But maybe the world’s bonkers and I’m just tuned to a frequency they can’t hear. And frankly, if someone wants to read this and roll their eyes, I say this:

    If you haven’t lived inside a body that breaks its own rules and a mind that sees through the cracks of reality… then pipe down.

    You don’t know what it’s like to:

    Lose your tongue to nerve spasms one minute, and

    See the cosmic infrastructure behind matter the next.

    MS hurts like hell. It rips you down. But maybe it also strips away illusions. Maybe it’s not just breaking me maybe it’s rewiring me.

    So, cubes and orbs, black lines and cosmic whispers bring it on. Whether it’s my disease, my destiny, or my daemon trying to speak…

    I’m listening. Even on the loo.

    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