Multiple sclerosis is My Living Hell

chronic illness

All posts tagged chronic illness 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.

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

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

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

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

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

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

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

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

    “The endless river… forever and ever…”

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

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

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

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

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

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

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ enter image description here @goblinbloggeruk - sick@mylivinghell.co.uk

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

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

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

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

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

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

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

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

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

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

    @goblinbloggeruk - sick@mylivinghell.co.uk 𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ

    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    it’s Wednesday no its Thursday dam. We’re off to the dentist with Albertine. A thrilling day out, I know. The trip’s about three-quarters of an hour, which is more than enough time for chaos to ferment nicely.

    Yopi my four-legged partner in crime is already vibrating with excitement. She doesn’t care that the van looks like it’s one pothole away from being declared a historical ruin. She clambered into the back like she owned the place, strapped in with her little doggy seatbelt, ready for action. And yes, she’s got her tripe treats. Because if you’re going to travel in style, you’d better smell like death warmed up.

    We’re cruising along at a decent pace, avoiding the craters the council call “roads.” Not too many today someone’s actually patched them. Miracles do happen. Just as I’m thinking this journey might be civilised, Yopi lets one rip.

    It’s not a polite little toot. No. This is a full-scale biological attack. Windows down. Albertine’s gone a shade somewhere between pistachio and hospital corridor. I’ve got my head halfway out the window, tinnitus roaring like a broken radio I can’t switch off. No mute button for my skull.

    And then… she farts again. Absolute carnage. I now officially smell like a rolling dog treat. Honestly though it’s hilarious. And weirdly, sitting there choking on Eau de Bulldog while my head screams, I felt… calm. Maybe “calm” is too strong. “Temporarily distracted from my own internal apocalypse” is more accurate.

    Sleep’s been scarce. The pain’s still here that burning, tingling bastard that starts low and just ramps up like it’s auditioning for a horror soundtrack. My keyboard’s finally given up on me too. “E”, “A”, “S”, “D” gone. Worn out by my furious bashing. A casualty of war.

    Meanwhile, my throat’s decided to re-enact a slow strangulation act. MS never runs out of party tricks.

    Then it hits me. Seventy isn’t that far off. And the thought makes my stomach sink. I’ve got no friends left. They’re either dead, disappeared, or just couldn’t hack the fact that my head and body have changed. Wheelchair. Pain. Brain fog. That’s the reality. Illness strips you naked in ways no one warns you about. It makes people quietly step back. Like grief, but you’re still bloody here.

    I miss the old me. He was loud. Misunderstood. A bit of a legend, actually. And now he’s gone. MS didn’t just change my body it erased someone I used to know.

    And in those quiet moments, when the tinnitus is screaming, the van smells like Yopi’s digestive crimes, and the world feels indifferent… I think about death. Not in a poetic way. In a “one day I won’t wake up and that’ll be that” way.

    And I wonder what exactly am I supposed to be learning from this slow burn?

    MS, you absolute bastard.

    Some afternoons hit differently. The sun hangs low, the world trundles on, and I sit here smelling faintly of tripe treats realising that existence is equal parts absurdity and ache. And somehow, in the middle of all that, I’m still here.

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

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ enter image description here
    @goblinbloggeruk - sick@mylivinghell.co.uk

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    “Cannabis isn’t a cure. But for me (and many others) it sometimes feels like lowering the waterline so I’m not constantly drowning.”

    Living with multiple sclerosis is like being handed a body that’s half-conspirator, half-prison guard. One day it lets you move, the next it locks you in with pain, spasms, and exhaustion. People who don’t live it often don’t get it. That ignorance can make conversations about treatments uncomfortable—especially when cannabis comes up.

    Cannabis still carries heavy stigma. For decades it’s been painted as the drug of lazy teenagers, a dangerous gateway, or a “last resort.” But the reality is more complicated. For many with MS, cannabis isn’t about chasing a high it’s about clawing back a bit of life. It’s not a cure, and it never will be. What it can do, in the right form, for the right person, is bring relief. Sometimes small, sometimes significant, always worth noticing.

    What the evidence actually says

    Science is messy, but let’s strip it down to what we know. Cannabis is a plant, yes, but the two compounds that matter most in MS treatment are:

    THC (tetrahydrocannabinol): The part that makes people high. Psychoactive, strong, and for some people, too much.

    CBD (cannabidiol): Doesn’t produce a high. Interacts differently in the body, often described as the calming counterpart to THC.

    Together, in carefully balanced medical products, they can target symptoms that MS brings to the table.

    Spasticity: where cannabis shines

    This is the symptom where cannabis shows the clearest benefit. Studies and lived experience show that THC+CBD sprays such as Sativex (available in the UK under specialist prescription) can reduce muscle stiffness and spasms. People report less pain, easier sleep, and more control. Clinical tools that doctors use don’t always capture the full effect, but patients’ own reports matter. Relief you can feel is relief that counts.

    Neuropathic pain: promising, but mixed

    Neuropathic pain is one of the cruellest symptoms of MS burning, stabbing, electric shocks that don’t stop. Some trials show cannabis extracts help reduce this pain, particularly when other drugs fail. Others find only modest benefits. What’s clear is that many patients experience genuine improvement, even if not every study proves it on paper.

    Sleep and quality of life: secondary gains

    When stiffness and pain ease, sleep improves. Better sleep ripples out into mood, energy, and daily functioning. These knock-on benefits often don’t make it into study data, but they matter enormously in real life.

    Why the stigma lingers

    Say “cannabis” and too many people still picture a stoner on a sofa surrounded by crisp packets. For someone with MS, that stereotype is a slap in the face. You’re not looking to escape you’re trying to ease spasticity enough to get through the night without screaming into your pillow.

    The stigma is political and cultural, not medical. Cannabis was demonised for decades, and even though attitudes are shifting, the old narratives cling on. In the UK, cannabis-based medicines are legal—but only under strict circumstances, and only through specialist doctors. Most GPs can’t or won’t prescribe. That leaves many people sourcing CBD oils or black-market products, where quality is questionable and legality is a grey cloud hanging overhead.

    Risks and realities

    Let’s not polish this into a miracle. Cannabis has risks. Honesty is what dismantles stigma, not over-promising.

    Cognitive fog: MS already messes with memory and focus. THC can worsen that for some.

    Mental health risks: High-THC strains can trigger anxiety or paranoia, especially in people already vulnerable.

    Physical side effects: Dizziness, fatigue, nausea, and changes in heart rate or blood pressure.

    Dependence: Rare with medical, controlled use, but not impossible.

    These don’t mean cannabis is “bad.” They mean it’s a tool, and tools need skill to use safely. The difference between relief and trouble often comes down to dose, formulation, and medical oversight.

    Why it matters anyway

    Here’s the thing: when you live with MS, symptom relief is gold dust.

    Even a 20% drop in pain, even one less night of spasms, even an extra hour of sleep it all adds up. That can mean the difference between being stuck in bed all day or having enough energy to make breakfast. Between drowning in pain and keeping your head above water.

    Cannabis offers that to some. Not all, not always, but enough that it deserves respect and consideration rather than judgement and whispers.

    What needs to change

    Research is still catching up. Decades of stigma slowed everything down. What we need now are:

    More trials: Larger, longer, better-designed studies.

    Clearer guidance: What dose works? Which formulation spray, oil, vapor, capsule?

    Doctor training: So patients aren’t left educating their own clinicians.

    Legal access: Safe, regulated supply that doesn’t force people into the shadows.

    Until then, people with MS continue to experiment quietly, often without the support they deserve.

    The bottom line

    Cannabis won’t cure MS. It won’t rewind the clock, repair nerves, or erase uncertainty. But it can lower the waterline. It can turn nights of relentless spasms into nights of sleep. It can dull the sharp edge of pain. It can hand back small fragments of control, and in a life where MS takes so much, those fragments matter.

    So let’s talk about cannabis without shame, without stigma, and without fantasy. Let’s call it what it is: a tool. Not a miracle, not a menace, but something that, for many, makes life with MS just a little more bearable.

    Quick facts: Cannabis & MS

    Not a cure. Cannabis doesn’t reverse MS; it’s used for symptom relief.

    Most evidence = spasticity. THC+CBD sprays (e.g., nabiximols/Sativex) show the clearest benefit for muscle stiffness and spasms.

    Pain help is promising. Many people report reduced neuropathic pain; trials are mixed but patient reports matter.

    Sleep & quality of life: Indirect benefits (better sleep, less waking from spasms) often improve day-to-day functioning.

    Risks exist: possible cognitive slowing, anxiety/paranoia with high-THC, dizziness, cardiovascular effects, and dependence risk.

    Formulation matters: spray, oil, vaping, or edibles deliver different effects — dose and ratio (THC:CBD) are key.

    Legal note (UK): Medicinal cannabis is prescribable but tightly regulated; specialist prescription is usually required.

    Practical tip: Start low, go slow. Use reliable sources and consult a clinician familiar with MS and cannabis.

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

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
    enter image description here

    @goblinbloggeruk - sick@mylivinghell.co.uk

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    As I look out the window, the hail is hammering the glass like nature’s own gang of thugs with ice-cubes. Each impact rattles through the room, echoing the storm going on inside my head. The concrete outside is now polka-dotted with white splats, like some deranged pastry chef has been at it. Above, thick, dark clouds are parked overhead, glaring down at me with all the charm of a nightclub bouncer at closing time. They’re not moving. They’re just there giving me the big “FU” while the sun tries to photobomb from behind them, throwing out an oddly warm glow.

    Normally, I’m colder than a fish finger left at the back of the freezer. My hands are like small icebergs, my circulation having given up years ago. But somehow, in this moment, I actually feel a bit of warmth. Weird, right? My throat and neck, on the other hand, are throwing a tantrum that familiar strangulation feeling wrapping around the right side of my throat and Adam’s apple. Lucky me, it’s only a half-strangle today. Always a silver lining.

    The top left of my head is doing its usual numb, pins-and-needles number, and the background soundtrack is a hellish lift music loop from the underworld. Perfect timing too because Rob Zombie just started blasting from my PC, in German of all things. It’s like being trapped inside a very confused nightclub. My hands are blocks of ice, typing slower than dial-up internet, but here we are.

    When the Wall Hits Back

    Years ago, in a particularly bad storm of frustration, I headbutted a wall. And yes, the wall won. Knocked myself out cold. Not my proudest moment, but it did force me to confront a few things I’d buried. Mental health wasn’t a conversation it was a brick wall. Literally.

    I felt completely misunderstood, like shouting into a void where nobody bothers to echo back. The only reason I got through it was because of my partner 42 years together and tougher than steel. We went through hell side by side, piecing my brain back together over five long years. Eventually, I realised what was gnawing at me: PTSD. Once I called it by its name, I could finally start wrestling it properly.

    The Pain People Don’t See

    Physical pain and mental pain love to hold hands; they’re like a toxic couple that won’t break up. People see the wheelchair, they see the physical stuff, but they don’t get the soundtrack in my head, the weird sensations, the pressure, the fading memory.

    I always tell people: go to your GP or a mental health professional. Get help. Don’t do what I did. My route was raw, brutal, and not for the faint-hearted. I’m a proud disabled man who’s learned to embrace his Marmite nature you’ll love me or hate me, but I’m not hiding anymore.

    I’ve spoken to the ghost in the machine. It told me I’ve got purpose, and I bloody well believe it.

    The Present Storm

    The hail is still bashing the windows. Yopi the dog has just let one rip, and I’ve remembered to stop breathing through my nose. The little things keep me grounded. My memory’s slipping more these days, the right side of my head feels like it’s stuffed with wet sand, but I keep rolling.

    Every journey in my powerchair is a trip into the unknown. Sometimes it’s chaos, sometimes it’s peace, usually it’s somewhere awkwardly in between. But I’m still here. Still moving. Still me.

    Afternoon AI

    Today’s weather forecast: 90% chance of hail, 100% chance of existential commentary, with occasional German industrial metal.

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

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
    enter image description here

    @goblinbloggeruk - sick@mylivinghell.co.uk

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

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

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

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

    My Version of the Four Types

    The Intruder Phase

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

    The Checkerboard War

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

    The Slow Burn

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

    The Quiet Conquest

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

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

    What These Labels Hide

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

    My Hope, My Roar

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

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

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

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

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

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

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

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

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

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

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

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

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

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

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

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    So, chronic illness. A joyride through hell in a wheelchair made of barbed wire. If you’re in the club, I don’t need to tell you it’s exhausting, absurd, and sometimes the only option left is to laugh before you cry yourself into a flare.

    Here are 10 “fun” facts about chronic illness that might make you laugh, groan, or throw something.

    1. The “Invisible” Magic Trick I’m fine. I look fine. Until I’m not. My body does the disappearing act of a Vegas magician, minus the applause. Cue the genius asking: “But you don’t look sick?” You’re right, Sherlock. Neither does Wi-Fi, and yet here we are.

    2. Chronic Illness Is Weirdly Popular Statistically, over half of adults have at least one chronic condition. That’s right, 50% of people are secretly walking (or limping) into the club. Pity the membership perks are rubbish.

    3. Genetics: The Family Heirloom No One Wanted Some families pass down houses, jewellery, or good bone structure. Mine passes down arthritis and dodgy immune systems. Cheers, ancestors.

    4. The Bonus Round: Mental Health It’s not just your body. Chronic illness takes your mind out back and kicks it around too. Depression, anxiety, stress it’s like getting the “deluxe” package nobody ordered.

    5. Cure? Ha. Science is trying, bless them. But for now, it’s all “management.” Basically, we live in the land of trial-and-error self-care. Sometimes exercise and kale help. Sometimes they just remind you that life is a cruel joke.

    6. Lifestyle as a Job Description Managing your health is like being a houseplant with trust issues. Food, light, water, stress control. Do it right and you might thrive. Do it wrong and you wilt in public.

    7. Predictability? Never Heard of Her. You plan a nice day? A flare hears you and says, “Not on my watch.” Your body is basically a toxic relationship: charming when good, brutal when bad.

    8. Personal Growth, Whether You Like It or Not You get tough, resourceful, and annoyingly self-aware. Like a Jedi, but with a stick instead of a lightsaber. Independence? Optional. Asking for help? Necessary.

    9. Tech Symbiosis Welcome to cyborg life. Fitbits, apps, pill alarms machines have become my sidekicks. My body rebels; my tech tattles. Together, we’re barely functional.

    10. You’re Not Alone It feels isolating, but the internet is crawling with people who get it. Forums, Facebook, Reddit, Insta tribes they exist, and they’ll make you feel less like a freak in the void.

    Closing Thoughts Chronic illness isn’t fun. It’s savage. It rips your plans apart, laughs in your face, and occasionally ruins your life for sport. But it also forces you to find humour in places most people would rather look away from. That’s resilience. That’s survival. And if nothing else you’re not alone in the madness.

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

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    Pets and Mental Health

    Let’s be honest: when you’ve got MS, or any chronic delight that chews through your brain and body like a rat in a cereal box, you need a bit of backup. Enter pets. They’re either the reason you cling to sanity… or the reason you’re face-planting on the carpet because your bulldog “accidentally” herded you into the coffee table.

    Companionship and Emotional Support

    Unconditional Love: Which really means they love you because you smell like food and have opposable thumbs. Still, it beats human relationships half the time.

    Routine and Responsibility: Feeding them, walking them, remembering to let them out before they piss on the carpet — structure, baby. Sometimes that’s the only structure MS lets you have.

    Stress Reduction

    Physical Touch: Stroking a cat reduces stress. Stroking a dog reduces stress. Stroking a hedgehog raises questions.

    Distraction from Worries: Watching your cat fail to jump on the sofa is cheaper than therapy and about as effective.

    Recognizing Emotional Changes

    Behavioral Cues: Dogs sense when you’re sad. Cats sense it too, but only so they can sit directly on your bladder until you cry harder.

    Encouraging Activity: Dogs make you move. Cats make you a static heating pad. Either way, your muscles get a workout — voluntary or not.

    Mood Enhancement

    Joy and Laughter: A dog chasing its tail. A cat chasing nothing. Both are funny until you remember they probably think the same thing watching you.

    Social Interaction: Walking a dog = conversations with strangers. Owning a cat = conversations with yourself. Both keep you just sane enough not to hit anyone.

    Pets will either:

    Save your mental health.

    Destroy your house.

    Remind you that death comes for all of us (but first for the goldfish).

    Still, between the fur, farts, and emotional chaos, they’re usually worth it. Unless you’re allergic. Then it’s just asthma and regret.

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

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    It’s Wednesday. Already. Somehow I’ve managed to do more life admin than seems humanly possible for a body powered by MS and stubbornness alone. My mind is a foggy wasteland of numbness, courtesy of my chronic neurological fun-fest, but the chaos seems… slightly less apocalyptic today. Small victories.

    Pain clinic consult? Surprisingly decent. I didn’t get gaslit, which feels like a miracle. Wheeled out with some scraps of positivity that I’ll hoard like toilet paper in a zombie apocalypse. MS nurse? Hoping she phones before I develop a permanent twitch from waiting. Overworked, underpaid, and heroic.

    AI is my new best friend. I’m on a mission to grab my MRI scans so my digital buddy can tell me exactly what’s in my skull. No doctor euphemisms, no vague nods at “abnormalities,” just straight-up pixel honesty: “Lesion here. Lesion there. Weird patch in your brainstem. That’s all.” Finally, clarity for a human with a brain that sometimes refuses to translate itself into English. White coats can go choke on their paperwork.

    Yopi, the four-legged chaos incubator, is settling into our life of slow-motion absurdity. She’s making my world stranger in ways I didn’t think were possible. Only snag? My mobility. Can’t take the walks, but we’ll train her to glide along with the powerchair. Life’s full of compromises, mostly involving gas masks for me and treats for her.

    Medical marijuana and THC/CBD oil are holding the line. No magic bullets for nerve pain, tinnitus, or the daily brain ache, but it helps, and I’ll take it. Every little sanity-saving thing counts when you’re a human pinball in an MS-shaped arcade.

    Meanwhile, I sit, inhaling the occasional waft of bulldog farts, contemplating life, death, and whether AI will someday take over all consulting roles for humans with chronic illness. It probably will, but at least it won’t judge me for smelling it all and laughing anyway.

    MS life: chaotic, smelly, occasionally enlightening, and fully documented with AI commentary for the ages.

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

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
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