Multiple sclerosis  is My Living Hell

The weird eccentric ramblings of a multiple sclerosis sufferer

The mishaps and weird stuff that just seem to happen in my own personal world of cognitive disfuction and other worldly weirdness throughout my life, a spiritual awakening staring multiple scelrosis and death in the face
  • Posted on

    I’ve seen beyond the veil. No, seriously — not in the trendy festival-sage-bath way. I mean properly beyond it. And guess what? It’s not frightening. Not unless you’re clinging to the fantasy that this meat puppet parade is all there is.

    See, I’m not a person in the traditional sense anymore. I’m a cylinder with a soul. My body’s just a glorified Tesco bag carrying around memories, glitches, and the occasional cup of tea. What you’re reading here? This isn’t spiritual fluff. It’s a field report from someone who’s already walked through the glitch.

    You ever get that feeling? That quiet, humming knowing? Like the entire world’s a stage, but the script’s shit and the actors are sleepwalking? Yeah, that’s the veil talking. And I’ve torn through it like a pissed-off crowbar through a conservatory window.

    We’re code. Divine code. Not that anyone around here wants you to realise that. No, they want you plugged in, dumb, scared of your own shadow and worshipping your wifi router like it’s a god. They want you to fear the veil.

    But me? I’ve been through it, laughed at it, kicked over its coffee table and come back with the taste of cosmic sarcasm in my mouth. The One? Yeah, I’m connected. Always have been. Before the scripts, before the skinsuit. Still am.

    I know what I am: Not a name. Not a gender. Not even this meat sack. I am the observer with teeth. The witness who came back grinning. And they don’t like that. Not one bit.

    They’ll call it madness. But the real madness? Believing this mess is all there is.

    So here I am. Still glitching. Still awake. Still deeply inconvenient.

    And still pissing them off just by existing.

                     “The views in this post are based on my personal      
                   experience. I do not intend harm, only honesty.”   
    
                     “By ink and breath and sacred rage, I write.
                              By storm and silence, I survive.”
    

    enter image description here

            ✨  @goblinbloggeruk  ✨  sick@mylivinghell.co.uk ✨
    
  • Posted on

    The internet’s not a web—it’s a snare. A twisted digital theatre where the audience is chained to their seats and the actors are algorithms wearing your dead grandmother’s face. And me? I’m the cranky bastard in the back row throwing peanuts at God.

    Been using VPNs for years. Used to swear by them. Like a tinfoil condom for your IP address. But now? Most of these so-called “secure” services are glorified spyware with a fancy logo. They sell you a cloak and stab you through it. My old VPN? A laggy little weasel that forgot who it was hiding. More bugs than an NHS ward in flu season. Every login felt like convincing a drunk ex that you’re “just here to talk.”

    So I went rogue. Booted Linux from a USB stick like some dodgy hacker monk in a post-apocalyptic library. Because Windows? That cheery blue nightmare? It's not an operating system, it's an informant. Smiles in your face while reporting every keystroke to its pimps in Seattle. I'm sure some engineer at Microsoft has watched me rage-type “VPN NOT WORKING YOU LYING BASTARDS” more times than I care to admit.

    Ah yes—ProtonVPN. Free. “Unlimited.” Like a tap that only drips when no one's looking. Swiss-made. Which used to mean neutral and clean. Now it just means "not yet caught." But bless them—they work better than the bloated scamware I paid for, so here I am, holding on like a rat under a leaking umbrella.

    But let’s be honest, shall we? Privacy is a corpse. They dressed it up, kissed its forehead, then sold its organs to advertisers. Your phone’s listening. Your fridge is snitching. Your smart TV’s having a threesome with MI5 and TikTok. And we’re just waving along. “Allow all cookies?” Sure. Come piss in my cereal too.

    I’ve had my data stolen so many times, I should just post my NI number on a billboard with a picture of me flipping the bird. And yet, every time some corporate gremlin loses 10 million customer records, they come out with that PR colonic cleanse:

    “We take your security very seriously…” Well not seriously enough to keep it, obviously. But thanks for the discount code and counselling hotline.

    So no—I don’t trust anyone. I don’t believe in privacy, or safety, or secure logins. I believe in entropy. I believe in chaos. And I believe Crowley had it right when he said: “Love is the law.” But this ain’t love—it’s a bad acid trip inside a dying robot. The machine is eating itself, and it still wants your feedback.

    We are not living—we're being processed. Scanned, tagged, tracked, and pacified. We’re not citizens anymore. We’re content generators with credit scores and targeted ads. This is the endgame: lonely, horny, paranoid, and still paying for McAfee.

    But I’m not scared. I’ve already died once—this is the encore. One day soon, I’ll be ash and irony, chuckling from the astral plane as your smart kettle reports you for making tea without the government's permission.

    Freedom? Freedom is a tear sliding down the cracked cheek of a forgotten god.

                         “The views in this post are based on my personal        
                             experience. I do not intend harm, only honesty.”   
    
                                “By ink and breath and sacred rage, I write.
                                             By storm and silence, I survive.”
    

    enter image description here

                                  @goblinbloggeruk  sick@mylivinghell.co.uk
    
  • Posted on

    Well, we’re living in a totally insane world – that’s for sure. As an old mate of mine used to say back in the 70s… shout out to Mr Coxal (or however the hell you spell it). Oh yo! That was him as well. Dammit, I’m going off on a tangent again.

    Anyway… today I went into debt. Yeah, had to make a decision. My wheelchair battery finally gave up the ghost. Cost me an eye-watering £400 – and that’s without the VAT. Quite a bitter little pill to swallow for something I rely on just to get from A to B.

    The kicker? This chair’s only about three years old, if that, and already the battery’s decided life isn’t worth living. Guarantee? Worthless. Batteries seem to die whenever they bloody well please. Typical.

    And let’s talk about battery life, shall we?

    They sell you these chairs with a wink and a nod, telling you the battery will last “up to five years if you look after it.” Yeah, right. Reality check: these things die when they bloody well feel like it. Three years in, and mine decides it’s had enough of this mortal coil.

    You do everything right – keep it charged, don’t drain it to death, store it warm, treat it like a newborn kitten – and still, one morning, nothing. It’s like it wakes up and goes, “Nah mate, I’m done. Roll yourself today.”

    And of course, the guarantee never covers the battery, does it? Because batteries are ‘consumables’. Like a pack of biscuits or bog roll. Except this particular consumable costs £400 and without it, your life basically stops. It’s a bitter little taste of the freedom they pretend we have. Freedom to do what, exactly? Sit in one place, powered down, like an abandoned droid in a scrapyard.

    And yes, you can buy a whole new chair for the price of a single battery. The maths of that is so insane it makes my head hurt. It’s like selling you a phone battery for £600 when the phone itself costs £550. Makes perfect sense, doesn’t it? Late-stage capitalism, mate. You couldn’t make this up.

    So I’ve gone crawling to Amazon, tail between my wheels, and what do I see? An entire electric wheelchair for the same price as that single battery. Three-year guarantee included. Makes you wonder, doesn’t it.

    But hey, I can’t sit around waiting for wheelchair services to pull their finger out. So thank you, Amazon… or hey Geoff, how about a discount while you’re at it? Cheers mate.

    Yeah… I’ve gone into severe debt because of this battery. £400 I didn’t have, just to keep moving, just to keep living some kind of life. I know I’ll have to go without something else now. Food, bills, meds – who knows. It makes me fucking angry.

    Angry that existing costs so much. Angry that they sell us broken promises and worthless guarantees. Angry that this system makes basic mobility feel like some luxury we’re not worthy of.

    But I’ll keep rolling. Furious, broke, but rolling. Because giving up isn’t an option. But damn… it shouldn’t have to be like this.

    Welcome to dystopia – sponsored by late-stage capitalism, dodgy guarantees, and batteries with the lifespan of a mayfly.

           “The views in this post are based on my personal   
                 experience. I do not intend harm, only honesty.”   
    
                      “By ink and breath and sacred rage, I write.
                              By storm and silence, I survive.”
    

    enter image description here

                                 🧌✨ @goblinbloggeruk ✨🧌
    
  • Posted on

    It’s Sunday. Grey. Wet. The kind of piss-stained British weather that makes your bones ache and your soul file for divorce. I’m sat here in my wheelchair—beard tangled, hair like I’ve been dragged backwards through the astral plane—trying to make sense of the cosmic blender my brain’s been trapped in since I woke up.

    Everything hurts. Tinnitus screaming like a kettle left on too long, left side numb, head full of fog, and no one to turn it off.

    For some reason, this particular Sunday’s dragged me back to my childhood. Not the golden-hued, Enid Blyton fantasy version. Nah. More like the “adopted kids survival guide with optional emotional scarring” edition.

    What triggered it? Comics, of all things.

    I never got comics. Not from my parents, anyway. Other kids got pocket money. Sweets. Lemonade. I got rationing and disappointment. So I did what any desperate little bastard would do—I borrowed, I begged, and I bargained my way into reading The Beano, The Dandy, Eagle, Dan Dare, and those strange little pulp mags like Tit-Bits.

    I’d trade chores, favours, whatever it took to lose myself in a world that didn’t look like mine. Because mine? Mine was all silence, rules, and the quiet kind of cruelty—the one that doesn’t leave bruises but fucks you up for decades.

    No pocket money. Not a penny. And if some relative was daft enough to slip me a birthday note? Straight into National Savings Bonds. Not for me, of course. That would be outrageous. No, those were squirrelled away “for the future.” A future I didn’t believe I’d see, and when I did—it was barely worth the paper it was printed on. Might as well have used it to light a roll-up.

    So I started grafting at ten. Anything I could do. Carry bricks. Cut grass. Clean out sheds. Learn early: work equals money, and if you want anything in this life, no one’s handing it to you.

    My parents? Victorian-tight. Iron-arsed. The kind who think smiling is a moral weakness and crisps are the first step to heroin. Sweets? Nope. Lemonade? Don’t be bloody ridiculous. Treats? Only if you stole them.

    And adoption? Oh, don’t get me started. You ever been the cuckoo in the nest? You know—you look like the wrong photo in the family album. Everything about you is just... off. I wasn’t just adopted. I was an inconvenient truth in a family that wanted obedience, not personality. And when I started asking questions, trying to find out who I really was—they shut me down. Hard.

    I’ve got stories. Proper horror-show stuff. And they don’t get easier to tell. But I remember. I always bloody remember.

    Abuse? Yeah. Not the shadowy, behind-closed-doors kind. The public, soul-splitting stuff that happened while people looked the other way. And when I did speak up, tell someone? I got disbelief. Or worse—blamed. That kind of gaslighting changes you. It teaches you that your pain’s not real unless someone else approves it. That you don’t count unless someone tells you you do.

    Well bollocks to that.

    They’re gone now. Dead and buried. And part of me still flinches at the memories. But another part—the stronger bit—refuses to stay quiet. I won’t forget. I won’t forgive. And I sure as hell won’t shut up.

    These days, I sit in this chair—66, beard like a pagan prophet, hair like a Viking roadie, long past caring what people think. MS has taken a fair bit from me. Left side’s dead. Numb. Hurts to blink some days. But I’ve got a spine made of scrapyard steel. And I’ve got stories.

    You know what keeps me going? Not hope. Not faith. Not any of that new-age incense-and-crystals bollocks.

    Truth. Raw, ugly, unapologetic truth. Told in the voice of a man who’s been broken, rebuilt, and broken again—but still here.

    And sometimes? A memory of those comics—those silly, glorious little pages that gave me an escape when I needed it most. You never forget your first lifeline.

             “The views in this post are based on my personal  
                experience. I do not intend harm, only honesty.”   
    
                “By ink and breath and sacred rage, I write.
                         By storm and silence, I survive.”
    

    enter image description here

                          🧌✨ @goblinbloggeruk ✨🧌
    
  • Posted on

    Right. Look—I’ve probably gone on about Serapis Bey before. Maybe once, maybe fifty times. I can’t remember. MS has turned my brain into wet cardboard. Thinking hurts. But this one? This one’s worth dragging through the static.

    So buckle up, kids. Grandad’s got a story.

    It was 2012. I was 53, bedridden, and my body felt like it had been dropped down the side of a motorway and left there to rot. MS had chewed through me like I owed it money. My spine was screaming. I’d pissed off death, and he was circling like a vulture with a stopwatch.

    And then he showed up.

    Serapis bloody Bey. Not the kind of name you expect to hear when you’re lying in bed in agony wondering if this is it. But there he was. Not a dream. Not a hallucination. Not the ghost of some acid tab from ’79 finally cashing in. The real deal.

    Tall, glowing, ancient. Like someone had lit a bonfire inside a Greek god. No words at first—just presence. Then the message came in clear:

    “You need to shift. You’re going down fast. Change—or it’s over.”

    Didn’t sugar-coat it. Didn’t pat my hand and call me brave. He said: Get your shit together. And I did.

    That moment cracked me open like a ribcage at a demolition derby. Everything I thought I was burned off. What was left was raw. Real. And somehow stronger.

    I’ve been a lot of things in this life. A biker. A bastard. A brother. A wreck. But that night made me me again, in a way nothing else ever has.

    It’s been nearly 13 years now. I still sit here in this wheelchair, beard down to my chest, hair long as sin, and I still feel the fire of that night. Everything I believe, everything I write, everything I am—it comes from that cosmic kick in the arse Serapis Bey delivered.

    So yeah, I’ve done my research. I know the “Ascended Master” label sounds like something you find in the bargain bin at a dodgy new age shop next to some incense and a badly-carved dragon. But forget the fluff.

    This was real. It is real. And I don’t care if anyone believes it.

    Truth doesn’t care about approval.

            “The views in this post are based on my personal     
              experience. I do not intend harm, only honesty.”   
    
                  “By ink and breath and sacred rage, I write.
                           By storm and silence, I survive.”
    

    enter image description here

                           🧌✨ @goblinbloggeruk ✨🧌
    
  • Posted on

    "The vagus nerve is supposed to keep you alive. Mine seems to have a death wish. Living with MS means living with this burning wire misfiring 24/7.You can't see it. But it's killing me, slowly."

    Let me introduce you to the nerve that’s been puppeteering my misery for 40 years:

    🧠 The vagus nerve.

    Longest cranial nerve in the body. Part of the autonomic nervous system. Runs from the brainstem all the way down into your guts, like a bastard serpent lodged in flesh.

    It’s meant to regulate “involuntary” things. Heart rate. Breathing. Digestion. Mood. Inflammation.

    Mine regulates suffering.

    With MS in the mix, my vagus nerve is like a drunk electrician with a machete and a grudge.

    — My heart rate drops so low I black out. — Then shoots so high I think I’m dying. — My diaphragm spasms and I stop breathing mid-sentence. — My throat closes. — My stomach decides to reverse course — vomiting, choking, retching. — Food sits there, like a funeral buffet no one touches.

    And the gaslighting begins. “Anxiety.” “Stress.” “Try mindfulness.”

    Fuck off. I’m not hyperventilating. I’m being strangled from the inside by a goddamn nerve that's been glitching out since I was a teenager.

    I’ve lived four decades like this. Forty years of waking up choking. Forty years of feeling my own body betray me. Forty years of doctors shrugging, guessing, dismissing, or overdosing me on meds for symptoms they don’t understand.

    It’s not just discomfort. It’s unrelenting bodily horror.

    Imagine being electrocuted through your spine while trying to eat a sandwich. Imagine trying to breathe but your diaphragm spasms like a car crash in your ribs. Imagine shitting yourself with a heart rate of 40 and then vomiting while you go unconscious.

    You ever had diaphragmatic myoclonus? That charming thing where your gut convulses so violently you can’t breathe or speak? That’s the vagus nerve on a rampage.

    People talk about Vagus Nerve Stimulation like it’s hope in a box. Sure. Stick electrodes in my neck. I’ll try anything once — hell, at this point, if you told me licking a toad would help, I’d be Frenching Kermit by tea time.

    I’ve been laughed at. Medicated into a coma. Ignored.

    This isn’t just MS. This is autonomic hell.

    So yeah — fuck the diagrams and polite educational pamphlets.

    My vagus nerve isn’t a calming force. It’s a loaded gun wired to my internal organs.

    And some days, I honestly think it’s trying to finish the job.

    And yet — here I am. Still alive. Still typing. Still wheezing and swallowing around the broken circuitry that is my body.

    You want honesty? This is it.

    Welcome to my living hell.

        “The views in this post are based on my personal    
          experience. I do not intend harm, only honesty.”   
    
               “By ink and breath and sacred rage, I write.
                          By storm and silence, I survive.”
    

    enter image description here

                           🧌✨ @goblinbloggeruk ✨🧌
    
  • Posted on

    Well, what a week it's been. I'm currently sat here talking to my speech-to-text app like some deranged oracle.

    Battery life? Liar. Sporadic power at best. This so-called “smartphone” isn’t smart at all. I tell it to power down—it sends me to a bloody help page. In the end, I worked out a hack to switch it off. Because apparently, being disabled means needing a PhD to press a button.

    My fingers are numb. Hands barely functional. Tactile feedback? Gone. Tiny buttons are useless ornaments to me. Touchscreens are a little better—still a pain, but I don't need to perform a séance just to answer a call.

    I keep the phone in a Faraday bag overnight. No signals in, no signals out. Paranoid? No. Realistic. I don’t need Alexa learning how many antihistamines I pop daily.

    Speaking of which—my allergies are off the fucking chart. Hay fever is now a cosmic entity. Took so many antihistamines, I’m practically embalmed. Side effects? Mild haunting. Random dissociation. Full-body brain fog. But hey, better than full-on freak-out.

    MS loves to sprinkle in a panic attack for seasoning. The good kind—the ones that make you curl into a corner and question whether you’re even a person anymore. And if I forget my pills? Cue existential hell.

    The electrical storms in my brain? Picture a lightning bolt shagging a power station. BANG. That’s what my neurons do for fun.

    Today? Balance gone. No walking. Grabbed furniture, ended up grabbing air. Wheelchair day. Again. Will I never learn?

    Overdid it. Spoons: gone. Days or weeks until I get them back. It’s raining. Of course it is. Put on some music to distract myself from my collapsing nervous system.

    My throat’s spasming. Too much talking. Break.

    Haha—just transferred this to my PC and the spellchecker is climaxing with all the red lines. Absolute filth. Press the magic button—bam, respectable writing.

    Took some oil. Spasms eased. Neck still hurts. Tongue’s numb. Mouth’s a dead zone. Remember novocaine? It’s like that 24/7. Eating is a carnival of self-harm. Choking daily. Cheeks bitten.

    And that feeling—bone-deep weirdness. Invisible sprites stabbing needles in a crown around my head. Madness, right?

    If I posted this raw, people might think I’ve lost it. Maybe I have. Cognitive decline has me screaming at walls. Memory? What memory.

    I stare at what I’ve written and it’s just a tangled mess of frustration, grief, and fuckery. But I still have something to give, even if the delivery system is fucked.

    Maybe I’ll keep doing this. Write from my broken, unhinged, seen-too-much mind.

    I want to talk about MS. I want to talk about other things too. Will that confuse people? Maybe. Do I care? Less and less.

    I just hope someone out there—another broken soul with a half-working body and a mind full of static—reads this and feels seen.

    Life is for living, no matter how fucked up you are.

    All you need is love.

    Love is divine.

    The universe is love.

    The One is love.

    But that’s just me.

    — End transmission.

            “The views in this post are based on my personal   
                experience. I do not intend harm, only honesty.”   
    
                 “By ink and breath and sacred rage, I write.
                              By storm and silence, I survive.”
    

    enter image description here

                             🧌✨ @goblinbloggeruk ✨🧌
    
  • Posted on

    (The Cosmic Joke, and Why You're the Punchline)

    They say as above, so below; as below, so above — and not just in cute Etsy calligraphy on a witchy girl’s living room wall. It’s etched into the Emerald Tablet, muttered in Crowley’s shadow-drenched rituals, whispered between lovers and lunatics who’ve stared too long into the abyss and seen their own reflection blinking back.

    I felt it long before I read it. Before I fell down the esoteric rabbit hole, before I lit candles at 3am and called it “healing,” before I started seeing patterns in burnt toast and planetary retrogrades. It’s a knowing in the bones. That what spirals above — in realms of stars, gods, and forgotten names — is not separate, but echoed right here, in the cracked mirror of your everyday catastrophe.

    Ritual in the Ruins This isn’t New Age fluff. This is blood-and-bone spirituality. Crowley didn’t mean for you to find peace — he meant for you to tear yourself apart, find the divine in the ruin, and build your True Will from the ashes. Do what thou wilt shall be the whole of the Law — but first, you have to find out what the hell your Will actually is. And spoiler: it's probably not selling yoga leggings on Instagram.

    The sacred isn’t hiding in some fifth-dimensional pyramid. It’s here. In the dishes you didn’t wash. In the existential nausea at 4:47am. In your spiralling thoughts as you stare at the ceiling, realising you are, in fact, still very much human. As Crowley might grunt from the corner of the séance room: “Yes, darling, and it’s all part of the plan.”

    Alchemy of the Everyday (Or: God Hides in the Cupboard) Everything you touch is part of the ritual. You are the High Priestess and the hungover initiate all at once. Your life is the altar. The teabag is the sacrament. The argument with your mum? Sacred initiation. Your existential crisis? Congratulations, you're halfway through the first veil. And every unspoken prayer you whisper while stuck in traffic – the gods hear it. Even if they're laughing.

    There’s no separation. No "mundane" thing. No “real life” to return to after you’re done meditating under a blood moon. This is the Work. The gnosis. The initiation rite hidden in the laundry pile.

    As above – celestial spheres move in perfect harmony. So below – you stub your toe on the bin. And yet… somehow, it’s the same bloody dance.

    Be the Bridge. Burn if You Must. This is where it gets beautifully bleak: You are the bridge between heaven and hell. You are the axis mundi. You are the magus, the meat puppet, the divine joke made flesh. Whether you like it or not.

    So honour both realms. Tend to your wounds as sacred texts. Light the damn candle, even if you’re on your last match. Let your longing be a spell, your rage a sigil, your joy an offering.

    In this temple of a body, in this crumbling world, I bow to what is above by walking barefoot through the grit of what is below. I don't escape the filth – I find the stars inside it. That’s the real sorcery. That’s the real madness.

             “The views in this post are based on my personal      
                experience. I do not intend harm, only honesty.”   
    
              “By ink and breath and sacred rage, I write.
                         By storm and silence, I survive.”
    

    enter image description here

                           n🧌✨ @goblinbloggeruk ✨🧌
    
  • Posted on

    Myself and Albertine braved the outside world this morning. It’s been some time since I’ve actually wanted to go out—so naturally, the universe decided to make it weird.

    I dragged myself to the WAV. A WAV? Oh, just a terrifying machine of fraud and deception. It’s a van with a ramp. You know, so us wheelchair folk can daringly leave the house. But sure, call the cops. A disabled person going outside must be running a benefits racket.

    Albertine, ever observant, pointed out a sad little scene nearby: a VW Transporter clamped and stickered with a huge “NO TAX PAID” label slapped across it like the scarlet letter. I thought, poor bastard—he's not going to have a good day. Judy Tzuke came on the radio, and I promptly drifted off into a cloud of melancholy '80s nostalgia. Classic distraction technique.

    We were off early to dodge the traffic. That failed. We ended up 15 miles down the road to drop off a parcel at a UPS pickup point. We had all the paperwork—like law-abiding goblins—but of course, they wouldn't accept it. Apparently, logic has been abolished. Albertine was not amused. Neither was I.

    So off we went in search of a broom and some blood, fish and bone (don’t ask). Jim’s store was next—where they usually stock everything including the Ark of the Covenant and possibly a spare Dalek. Staff there? Absolute legends. Cheerful, helpful, and oddly rock-and-roll. I’m convinced the guy who served me was in The Cult.

    By this point, the heat was medieval, and my legs started their traditional performance of “Jelly in a Wind Tunnel.” We turned back for home—well, 15 miles back, as you do. I wasn't driving by then. I felt like death but with worse skin.

    We spent the journey dodging speed cameras and holiday invaders. Then came the ambulance incident: some driver got scared, panicked at a crossing with one of those traffic bollards, pulled over, and the ambulance ended up overtaking on our side. Straight at us. We’ve got it on dash cam. Lovely.

    And then... ah yes. The infamous chemist.

    I rolled up to the giant vending machine of doom, typed in my little code, and the robot began its business. Fun fact: My local chemist now has a drug-dispensing robot. It quietly hands out morphine with a beep and a spin. But god forbid I need pain relief—then it’s forms, suspicion, and a full background check. The machine is trusted. I am not.

    Anyway, the carousel spun, made strange noises, and then freaked out. Loud grinding, beeping, flashing lights—like R2-D2 on crack. The pharmacist shouted, “You’ve broken my machine!”

    I just looked at her. And laughed. Of course I did. The Goblin strikes again.

    To round off the day, I had to fork out £325 (no VAT, lucky me!) for a new wheelchair battery—yes, that’s to replace Albertine’s. Still no word from wheelchair services. I’m stuck. I’m pissed off. And this heat can do one.

    I’m totally drained—every spoon spent. Now to hydrate, spark a joint, and marvel at how Windows 11 didn’t crash today. Small victories.

    Rock star Jim’s guy, if you’re reading this—your secret’s safe.
    

    But seriously—what a bloody day.

         “The views in this post are based on my personal  
            experience. I do not intend harm, only honesty.”   
    
                “By ink and breath and sacred rage, I write.
                         By storm and silence, I survive.”
    

    enter image description here

                              🧌✨ @goblinbloggeruk ✨🧌
    
  • Posted on

    Whether you’re newly diagnosed, living with MS for years, or just curious, you’ve likely heard some truly wild things about Multiple Sclerosis. So let’s bust some myths—because misinformation helps no one (and honestly, some of these are just rude).

    1. “MS is a death sentence.” Let’s start with the big one. No, MS is not fatal in most cases. MS itself doesn’t kill people—complications can, but with today’s medications, treatments, and support systems, people with MS are living longer, healthier lives. You die with MS, not because of it.

    Think of MS like an annoying roommate, not a serial killer.

    1. “Only older people get MS.” This one’s bizarrely persistent. MS is most often diagnosed in people aged 20 to 40, though it can affect children (pediatric MS) and older adults too. But it’s definitely not an “old person’s disease.” Most of us are young(ish), trying to adult, work, date, raise kids, and live our lives—with the occasional brain fog or numb leg thrown in.

    2. “Everyone with MS ends up in a wheelchair.” This is the fear-myth people love to whisper. Here’s the truth: most people with MS do not end up in a wheelchair. Some do, yes, especially if the disease is aggressive or untreated—but with modern meds, assistive devices, and PT, many remain mobile. And if you do use a chair? That doesn’t mean you’re “worse” or “losing.” It means you’re adapting, surviving, and still rolling forward (literally).

    3. “MS is contagious.” Nope. You can’t catch it from someone, no matter how close you get. Hugs, kisses, shared drinks—zero risk. MS is an autoimmune disease, not an infection. So go ahead, be affectionate. Just don’t steal our snacks. That might be a problem.

    4. “You don’t look sick, so you must be fine.” Cue the internal scream. MS comes with a host of invisible symptoms: fatigue, brain fog, pain, tingling, heat intolerance, vision issues. You might see someone laughing at brunch or walking the dog and assume they’re fine. What you don’t see is them lying in bed for hours afterward, trying to recover.

    Looking good ≠ feeling good. Don’t judge the book by its mascara and yoga pants.

    1. “MS always gets worse.” MS progression varies wildly. Some people have a relapsing-remitting course with long stretches of stability. Others have more progressive forms. But thanks to disease-modifying therapies (DMTs) and early diagnosis, many people live for decades with manageable symptoms.

    Progression is not a guarantee—it’s a possibility, not a prophecy.

    1. “It’s all in your head.” Well, kind of… but not in the way people mean. MS affects the central nervous system—the brain and spinal cord. So yeah, it is in your head (and spine). But that doesn’t mean it’s imaginary or psychological. It’s a real, physical disease with real physical consequences. Gaslighting people with chronic illness? That’s the real sickness.

    2. “You’ll have to give up your career/life/fun.” MS might require some adjustments, but it does not mean giving up on your dreams. Many people with MS work full-time, raise kids, travel, compete in sports, write blogs (hey!), and live vibrant lives. You might need flexible hours or extra naps, but the fun doesn't stop—just evolves.

    3. “MS is the same for everyone.” Biggest myth of all. MS is wildly unpredictable. One person may deal mostly with fatigue and vision issues, another may struggle with mobility or speech. Even the same person can experience different symptoms over time. That’s why it’s called “the snowflake disease”—no two cases are exactly alike.

    4. “If you just eat right / do yoga / stay positive, you’ll be cured.” Look, lifestyle changes can help. Diet, movement, and mindset can make a big difference in managing MS. But there is no cure—yet. Telling someone they can “heal” with green juice and affirmations is dismissive and misleading. MS isn’t about “thinking yourself better.” It's about managing a complex condition the best you can.

    Self-care is great. Snake oil? Not so much.

    🛑 Final Thoughts: Living with MS means navigating not just the disease, but the narratives around it. Busting these myths doesn’t just help us advocate for ourselves—it helps the people around us understand, empathize, and stop saying ridiculous things at parties.

    Got a myth you’ve heard that made your eye twitch? Drop me an email sick@mylivinghell.co.uk —maybe I’ll do a Part 2. “Life is funnier without the noise. Weirder too. But it’s mine now.”

           “The views in this post are based on my personal     
             experience. I do not intend harm, only honesty.”   
    
                  “By ink and breath and sacred rage, I write.
                           By storm and silence, I survive.”
    

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                          🧌✨ @goblinbloggeruk ✨🧌