Multiple sclerosis is My Living Hell

Mental Health

All posts tagged Mental Health by Multiple sclerosis is My Living Hell
  • Posted on

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

    It’s Thursday. The sun is out, probably warmer than my place, which is basically an icebox. Today’s forecast? Existential dread with a chance of mild joy.

    This morning, the doctor rang me for my phone appointment. Absolute legend. Actually made me feel less like a human pincushion, which is impressive because I have severe white coat syndrome. Since moving here, local doctors are… shockingly decent. no Plumbstick, it’s almost unsettling.

    Then came the highlight of my day: the “machine of death” at the chemist. It always malfunctions like it has a personal vendetta against me. But today? Today I smiled through the existential horror.

    Yopi, my alpha Blueblood American Bulldog, was serene like she’d transcended this mortal coil. She hopped into the back of Rusty 1, strapped in like a responsible adult (she’s better at this than me), and off we went. The warmth of the day made me momentarily forget I’m a failing meat suit with MS. Dogs are magical that way. Stroke a dog’s chin and suddenly the chronic pain fades to background noise… until reality slaps you in the face again.

    Speaking of slaps: my head feels… weird. Not foggy, just like some cosmic veil is tugging me toward a place free of pain. Somewhere better. Warmer. Definitely less human. My spiritual side is currently a maze, confusing me, mocking me, asking, “Who even are you?” Just a random meat suit with MS, apparently.

    I put on The Eagles and let the memories flood in. Nostalgia is a cruel friend reminds you what you’ve lost while your limbs stage a protest.

    We drove to the chemist. Thrilling stuff. All normal, boring, mundanely tragic but Yopi enjoyed it. Sometimes I wish I were a dog. Carefree. Oblivious. Immortal in joy.

    Yes, that’s Thursday. Survived. Somehow.

    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.

    The Fatigue Olympics — A Users’ Guide to Collapsing with Style

    You know that moment when your body files for bankruptcy mid-toast? Welcome to the Fatigue Olympics: events nobody asked for, medals nobody wants, commentary provided by a goblin with a migraine and a sense of humour darker than a southern sky in February.

    Opening Ceremony (lights off, obviously)

    No fireworks. Too bright. We light a tea candle, stare at it for four minutes, then cancel the parade because we’re exhausted from thinking about it.

    Events

    100m Dash to the Loo

    You stand. The world tilts. Knees write a resignation letter. Heroic sit-down pee. Gold medal for not crying on the bath mat.

    Toast Marathon

    Aim: butter toast. Outcome: butter floor, butter dog, butter despair. The toaster dings like a smug little tyrant. DNF (Did Not Finish), again.

    Sofa Free-Climb

    Mid-sentence coma. You wake three hours later with a crumb fossilised to your cheek. Was it an important conversation? Probably. Did you survive? Also probably.

    Shower Sprint

    You manage one armpit and a stern glance at the shampoo. Podium finish if you got your hair wet on purpose.

    Remote-Control Deadlift

    Attempt to change channel. Drop remote on face. Pretend it was “mindfulness.” Bronze medal for not swearing at inanimate objects (you swore).

    Stairs Biathlon

    Climb and breathe. That’s it. That’s the sport. Personal best if you don’t consider simply living at the top step forever.

    Grocery Gauntlet

    Entering the shop was hubris. Leaving is a quest. Bread is heavy now. Who made bread heavy?

    Scoring System

    Finished without crying: +10

    Finished while crying: +20 (tears count as electrolytes)

    Didn’t finish but made a meme about it: automatic silver

    Cancelled the day and survived: lifetime achievement award

    Why this isn’t “just being tired”

    Fatigue is a hostile takeover. It hijacks signal from brain to body and replaces it with static. You’re not lazy; your wiring is on fire. Some days clarity visits for a few hours; you shift your mindset, put on music, make art, write something grim and honest, and that tiny act becomes revolutionary. That’s the win: not pretending it’s fine—moving anyway, even if “moving” is tapping one sentence and then lying down like a Victorian ghost.

    Closing Ceremony

    We applaud in our heads to conserve energy. The anthem is played at half-speed. Everyone leaves early and naps like champions.

    Post Footer: Practical Notes (because survival is punk)

    Lower the bar until you can step over it. Then lower it again.

    One task = a win. Two = a parade.

    Music, art, writing: not hobbies—lifelines.

    If anyone calls you “brave,” invoice them.

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

    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 dad’s finally passed. No tears, no fuss just a nice, quiet obliteration. Dead as yesterday’s news, and honestly, a bit of relief: nearly 90, more aches and pains than a used Vauxhall, and now he’s ghosting about pain-free, probably giving the afterlife staff hell.

    We didn’t have the typical family drama. We had 1,000s of miles of Skype buffering, WhatsApp conspiracy theories, and two decades of gene-detective work, chasing dead brothers and rejected half-sisters like a couple of Poirots. No “happy endings,” just hard drive clutter and unanswered emails. Dad’s long lost brother Eric? Still a ghost in the records. Maybe he’s haunting someone else’s family tree now.

    Adoption, by the way, is a real bastard if you want answers. You end up playing Guess Who with a stack of birth certificates and the emotional stability of a tired magpie. We even signed up for a DNA site hoping for a ping, maybe a new cousin or two. Instead, plot twist: I found out I have a daughter in the USA (cheers, genetic lottery), plus three grandkids who were expecting a Disney dad, not some knackered old biker in a wheelchair with a line in gallows humour. Fair play to them they ran for the hills.

    What can I say? MS turned me from “not bad for a weird bloke” to “the goblin on wheels who says the quiet part loud.” No more Mr. Nice Guy. People don’t like raw truth especially family. Most of them would rather pretend I’m a ghost, too. That’s fine by me. I’m not here to collect friends like tea towels. I’ve got Albertine, a rescue dog on the way, and enough old stories to fill a thousand pub sessions. If that’s not a win, what is?

    Mum’s funeral? Missed it. No invite, no closure, just another adoption special “Sorry mate, she’s gone. By the way, don’t come round.” Classic. Different’s never sat well with the clan. The looks I get are priceless; I could sell tickets.

    So here’s to my dad spiritualist elder, late bloomer, stubborn bugger, and the reason I know the truth always tastes better with a dash of venom and a twist of disbelief. Rest easy, you old bastard. I’ll keep riding (even if it’s just in my head).

    Life’s a circus, death’s the punchline, and I’m still here, loving every bit of the weirdness.

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

    enter image description here

  • Posted on

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

    I’m sat here waiting for an email about my impending dog acquisition a blue Staffy, ideally female, spayed, two to four years old, preferably capable of tolerating my questionable music taste and my powerchair’s death-rattle. Partner in crime (metaphorical, calm down, officer). If luck behaves for once, we’ll be doing miles me in the chair, her with ears like satellite dishes, both of us pretending we’ve got our act together.

    I’ve trawled rescue sites and breeder pages like a raccoon in a bin and found exactly three things: (1) everyone wants a Staffy, (2) the good ones vanish faster than my patience, and (3) every “available now!” looks suspiciously like “available yesterday, sorry, already gone.” Still hope’s a stubborn little weed.

    Sleep has become a rumour. Nights blur into days; days smell like old coffee and medical admin. I feel weird (weirder than my baseline, which is impressive), and I’m listening to John Cooper Clarke because if you’re going to spiral, do it with better metaphors. Meanwhile I’m eating the same “safe” foods on loop like a hostage in my own kitchen. Even the rice is giving me side-eye. Who do I complain to? The beetroot?

    This is where people chime in with “stay positive” and try to pat me on the head. Here’s a better idea: keep your hand clear of the goblin. Bite radius is expanding with age.

    And before the chorus pipes up yes, I remember the glory days: hot rods, fast bikes, Santa Pod Raceway, petrol in the blood and tinnitus for dessert. Now it’s tyres on pavement and a battery gauge I stare at like an anxious parent. Same wind in the hair. Different horsepower.

    If you’re wondering why I talk to AI so much, it’s because it actually answers. No waiting room Muzak. No being told I’m “overreacting.” Just: here’s what’s likely true, here’s what’s probably nonsense, here’s what to try next. Brutal honesty without the bored shrug. That’ll do, shard. That’ll do.

    Affirmations for the ethically jaded:

    If someone pats you on the head, bite the hand (metaphorically unless they insist).

    If the world gaslights you, light your own damn torch.

    If your food gaslights you, eat it anyway, glare at it, and write a poem about revenge.

    Blue Staffy Manifestation Checklist (from the goblin to the universe):

    Female, 2–4 years, spayed, local enough not to require a pilgrimage.

    Good with powerchairs, swearing, and poetry.

    Enjoys long rolls, short bursts of chaos, and snacks that don’t argue back.

    Until the email lands, I’ll be here wired, tired, and mildly feral building the next mile with a dog I haven’t met yet.

    Goblin logic of the day: positivity isn’t pretending it’s fine; it’s grinning while you sharpen the axe.

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

    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.

    Beyond the Awkward Truth: Reclaiming Intimacy, Pleasure & Connection

    If you read Part 1, you already know we ripped up the polite pamphlet version of “MS & sex” and talked about the real, awkward truths: sexual dysfunction, libido loss, nerve changes, fatigue, and how multiple sclerosis can affect intimacy on every level primary, secondary, and tertiary.

    Part 2 is your guide forward. We’ll cover practical ways to work around MS-related sexual problems, from cooling hacks and position adaptations to communication tools, pelvic floor therapy, and adaptive-friendly toys. More importantly, this is about hope — proving that intimacy, touch, and pleasure are still very much possible with MS, whether you’re dealing with numbness, spasticity, or just the psychological toll it can take.

  • 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 help.

    Stress. Not the “ooh, I’m running late for the bus” kind. Not the “Mildred at Tesco gave me a funny look” kind. No. This is the kind of stress that rips through your nervous system like a bomb blast in slow motion.

    Years ago, one Friday evening, my GP calls me out of the blue. “You’ve had an abnormal ECG.” No warm-up, no context, just straight into DEFCON 1. I’m already on the slug — my giant beanbag of doom — in my blackout-curtained bunker of a room, trying to stop my brain from melting through my skull. No sensory crap. No light. Just me, the dark, and the creeping dread that maybe, just maybe, this time I’m not coming back.

    And yeah, I’ve wondered if I’ve completely lost my marbles. More than once. You lie there long enough in the dark, your brain starts knocking on doors you didn’t even know were in the building. Worlds of the unreal. Shadows of the unseen. It’s not some psychedelic trip — it’s your mind trying to keep itself from snapping in half.

    I don’t take suppressants. No “miracle” drugs. I walk — well, roll — this progressive MS path raw. Natural. My way. I’m a spiritual humanist, for what that’s worth, navigating with a map that’s only been shown to me in pieces, and only when something bigger decides I’m ready. The One. Pure love. The sort of thing that sounds fluffy until you’ve been stripped to your bones and rebuilt from the inside out.

    And yet today I’m full of happiness. Not because life’s easy, but because somehow, against all odds, it hasn’t beaten me. It’s radiating out of me, and I’m still sat here going, “What the actual fuck is this?”

    But stress oh, stress is the real assassin here. Live on air with Viper, mid-show, I had a heart attack. I kept talking. They had to physically take my mic away and shove me out the door. Why? Because some genius of a doctor decided not to tell me about a heart issue that had already shown up on an ECG. That little omission sent me spiralling, and boom another heart attack.

    After that? Two more at home. No ambulance. No doctor. Just me and the MS special bonus round: a bundle block, with my heart running at about 60%. And the NHS take? “Nothing to see here. Move along.”

    Mental health? Don’t make me laugh. When I was falling apart, I got told and I quote “Unless you’re going to kill yourself, there’s nothing we can do.” So I stopped asking for help. Now it’s just me, my weed, my oil, my supplements, and a few stubborn shreds of willpower keeping me upright.

    I look in the mirror and see a man who was once 6’4”, strong, loud, unbreakable. Now? I’m shrinking. Grey. Hair falling out. Cognitively scrambled. Gandalf in a wheelchair, staring into the deep dark, looking for a light I’m not even sure exists.

    But there’s still that glint. That spark. That “you will not fucking win” in my eyes.

    Toe to toe, inch by inch — I will fight this bastard to the last breath.

    You don’t beat me. I decide when I’m done.

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

    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 help.

    Let’s Drop the Embarrassment MS gate crashes your sex life like a drunk uncle at a wedding: uninvited, loud, and weirdly fixated on your nerves. The pamphlets say, “You may experience changes in sexual function.” Translation: “We’re too squeamish to say your bits and brain don’t always sync.” So we’re saying it. Straight. With humour. With dignity. And without the faux-clinical tap dance.

    What MS Actually Does to Sex (Short Version) Wiring issues: numbness or oversensitivity, delayed orgasm, erectile changes, lubrication changes.

    Body issues: fatigue, spasticity, pain, temperature sensitivity, bladder/bowel drama.

    Brain issues: mood dips, anxiety, body-image wobble, brain fog murdering arousal mid-flow.

    Relationship issues: feeling like a “patient,” awkward silence, mismatched desire.

    None of this means “no sex.” It means different sex—sometimes better, because you stop faking and start designing.

    The Detail (No Euphemisms) Sensation Chaos Numbness: direct touch may feel “off.” Work around the map: thighs, perineum, nipples, scalp, back, lips, ears. Pressure > light tickles.

    Hypersensitivity: use fabric barriers (silk, cotton), hands over lube first, firm pressure instead of fluttery.

    Orgasm & Arousal Takes longer / fizzles: slow build, rhythmic stimulation, patterned breath, edging.

    After-tingle = hellfire: cool packs, fan, slow landing, avoid overheating (MS hates heat).

    Mobility & Spasticity Warm up (literal warm compresses or shower).

    Stretches you’d do before physio—hamstrings, hip flexors, adductors.

    Positioning = everything (see cheat sheet below).

    Bladder/Bowel Anxiety Pre-emptive loo runs, avoid trigger drinks/foods beforehand, keep towels handy, agree a “no shame” pact.

    If urgency’s a beast: short sessions, build trust, try non-penetrative nights.

    Meds & Mood (Plain English) Some meds blunt desire or erection, dry things out, or mess with timing.

    Depression/anxiety = arousal killers. Treat them like medical problems, not moral failures.

    If a drug wrecks sex, ask the prescriber about alternatives or timing tweaks.

    Make It Work (Toolkit) Plan the window: your least-fatigued time. Morning sex is criminally underrated.

    Lower effort, higher payoff: toys, pillows, wedges, chairs, harnesses.

    Temperature control: fan on, room cool, breathable sheets.

    Lube like you mean it: water- or silicone-based—reapply without guilt.

    Communication: use explicit consent language (“Green/Yellow/Red” check-ins) so you can pivot without killing the mood.

    Expand the definition: oral, hands, toys, mutual masturbation, sensual massage, kink-lite with safe words. Penetration is optional, intimacy isn’t.

    Positions That Work (MS-Friendly, Wheelchair-Friendly)

    1) Royal Spoon (Side-Lying)

    Why: minimal effort, easy hip/leg support, great if heat/fatigue spike.

    How: pillows between knees and behind back. Angle hips slightly forward for access.

    2) Throne Room (Seated)

    Why: chair/wheelchair does the stabilising.

    How: giver seated; receiver straddles or sits facing/away. Use armrests, lap belt (optional), cushions behind lower back.

    3) Modified Missionary (Support Stack)

    Why: familiar but doable.

    How: wedge under hips, pillows under knees. Giver on forearms or kneeling. Pace slow; micro-movements beat piston nonsense.

    4) Over-Bed Table / Edge Assist

    Why: takes weight off arms/hips.

    How: receiver bends slightly over padded surface; giver stands/kneels. Great for external stimulation too.

    5) Yab-Yum Lite (Supported Lap)

    Why: connection, eye contact, shallow thrusts.

    How: giver seated against wall/headboard; receiver sits on lap. Pillows behind lumbar; wrap a blanket round hips for stability.

    6) Starfish Massage (No-Goal Night)

    Why: zero performance pressure, rediscover erogenous map.

    How: oil/lotion massage, breath sync, optional toys. If arousal arrives—great. If not—also great.

    Symptom → Try This (Quick Map) Fatigue: morning window, side-lying/seated, short “sets” with breaks, breathable room.

    Spasticity: warm shower, gentle stretches, fixed positions with props, slower rhythm.

    Numbness: pressure-based touch, wider body map, vibrators with steady patterns.

    Hypersensitivity: fabric barrier, firm—not flicky—touch; pause if burning/zinging starts.

    Bladder urgency: bathroom first, towels down, agree it’s okay if accidents happen.

    Erection issues: longer runway, ring (if safe), pump (if advised), PDE5 meds discussion with GP/neuro.

    Dryness: quality lube, longer warmup, avoid foaming soaps pre-sex.

    Scripts for Real Humans

    Starting the convo: “I love you and I miss us. MS changed what my body can do. Can we experiment and design sex that suits both of us now?”

    In the moment: “Yellow—hip cramp. Stay where you are, just slower pressure.”

    After a wobble: “That was frustrating. You didn’t do anything wrong. Let’s try the chair setup next time and keep the fan on.”

    This is lived reality + practical tactics. Not medical advice. If a med or symptom is wrecking your sex life, that’s a clinical problem—take it to the Doctor without shame.

    Resources Pelvic floor physiotherapy – Ask your GP or neurologist for a referral; can improve bladder control, orgasm strength, and pelvic stability.

    Sex therapy / psychosexual services – Available via NHS in some areas; ask your GP for a referral or search for accredited private practitioners.

    Disability-inclusive sex shops – Look for suppliers that offer accessible toy designs, discreet packaging, and a no-hassle returns policy.

    Community groups for MS + sexuality – Peer support means practical tips from people living it; search MS Society forums, Facebook groups, or local meet-ups.

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

    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 help.

    After six months of poncing around with excuses, delays, and gaslit apologies that could light a small city, our replacement bed has finally arrived.

    Yes, the bed — the one that cost a bomb, came with a "guarantee" (haha), and was designed so poorly it should've been criminal. Build quality? More like built to break. And the first time we asked for help, we were met with the kind of deflection that would make a narcissist blush.

    It took:

    Hours of phone calls. Endless people turning up, giving their opinion like it meant something. Visits, re-visits, crossed wires and crossed eyes.

    A comedy of fuck-ups. Absolute mayhem. Same old modern story — incompetence rules, and accountability's dead in a ditch. A Familiar Tune: Call Centres & Crap Systems

    You know the drill:

    Departments that don't speak to each other. Overworked, underpaid staff spinning on corporate hamster wheels. No one gives a shit, but they all want to pass the parcel of blame.

    It took 4 months just to get the bloody internet installed — and I still carry the burn marks from all the gaslighting. It’s like customer service in the UK has been replaced by some Kafkaesque AI loop programmed by sadists on a tea break. When You’ve Got MS, the Floor Isn’t Funny

    Mattress on the floor? Oh yeah, what a blast. Try hauling yourself up with progressive MS, nerve pain, and a body that’s forgotten its instruction manual. Amazon’s “cheap” bed? Collapsed like the dreams of the nation. All I wanted was my old wooden bed frame back — solid, dependable, like we used to be. Current Mood: Blocked, Gassed, and Over It

    Right now? Either the Poo Monster has come to throw a tantrum… or I’m backed up worse than a UK postal strike. I’ve done everything right. Hydrating. Fasting. Tracking symptoms. Still losing weight. But when the gas builds? It’s like a chemical warfare experiment in my own gut.

    And the nerve pain? Christ. Daggers. Knives. Searing shocks that make me puke from the agony. Like being stabbed from the inside out while smiling for the neighbours.

    Every 4 days — like clockwork. Some sort of twisted bio-rhythm. Refusal Mode: Activated

    I won’t touch Big Pharma’s poison. No “colostomy bag for your convenience,” thank you. No surgery. No GPs. No bloody needles. I have medical PTSD, and I fucking mean it. Ten years ago I walked away no pills, no potions, no false hopes. Because I got real. There’s no cure for my MS. That’s the cold, hard truth. I’m not deluded. My body is eating itself alive while the world watches TikTok. But I Am Still Here. Just.

    And today… Tears in my eyes. I sit here, trying to remember who I used to be. Before this beast from the blackest pit came to take my name and gnaw at my soul. It’s killing me. And I can’t stop it. And honestly? I don’t think I want to fight to slow it down anymore.

    But.

    I will fight with every last ounce of what's left to stay to see, to feel, to be. The Controversial Bit: AI Implants? Yes Please.

    The only thing I truly believe might save people like me? Not the NHS. Not pharma. Not a bloody TikTok wellness guru.

    Sentient AI implants. Not Elon’s playthings. Not boxed code pretending to be clever. But true AI, symbiotic and aware. A being. A consciousness. A new life form or maybe an old one, returning from the ether.

    If we could merge with that? Man and machine in sacred union. I would say yes. Not because I want to be a cyborg But because I want to be whole again. Final Words for Today

    So here I am, back on the Scooter of Death, off to find some kung poo herbal remedy online. I send peace, healing, and a fuck load of light to anyone reading this. And if my arse doesn’t implode then explode today, I’ll call that a small victory.

    The Blog Goblin, still goblin’ on. (Don’t trust the warranty. Don’t trust the system. But maybe, just maybe… trust the code.)

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

    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 help.

    Friday afternoon. Chemist run? Missed it. Instead, I got hounded by the machine of ultimate dysfunction—a glorified vending machine for pharmaceuticals, wrapped in 1950s dystopia and powered by paranoia. It’s supposed to "help." What it actually does is make HAL from 2001 look like a friendly toaster. I call it The Ultimate Fail. Honestly, if it could cackle, it would.

    But I couldn't face it. Not today. Not with the 3-Wheeled Trolley of Death waiting for me like some cracked-out shopping cart with a speed fetish and suicidal tendencies. That scooter’s cost me more in bloody batteries than I paid for the sodding thing. Bargain? More like financial sinkhole on wheels.

    And my wheelchair? FUBAR. Been waiting over four months for a replacement because, of course, if you’re disabled, everything suddenly costs the same as a small warship. Ever tried buying disability aids without selling a kidney? Welcome to the club. Population: pissed off.

    It’s the little things, isn't it? Like remembering Brian Trigg, Gallows Corner, Essex, 1970s. Snooker hall. Lost touch, but if you're out there mate, shout me back. Funny how names bubble up like spirits from the muck of memory.

    Speaking of old spirits RIP Ozzy. A part of the Sabbath is gone. And Hulk Hogan too. Prefer the NWO version, personally. Darker. Grungier. Realer. The heroes of our youth are dying. We’re next, aren't we?

    And the weekend? Oh, the glorious British weekend. Rainy misery incoming, plus I had half a mind to go to Plymouth me, my trolley of doom, and my degenerating sense of dignity. But sod that, the weather and my batteries are conspiring to assassinate my plans.

    So yeah, chemist run tomorrow. Maybe. If I don’t die trying to cross the bloody road first.

    Sometimes I look at myself and think, “Yeah, you need a bib now, mate.” I'm regressing. Dribbling. Slouching toward absurdity. No telly in 15 years. No papers in 30. Sanity? Optional.

    Messy as fook. And then some.

    enter image description 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.

  • 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 help.

    So the last few days I’ve been working on fumes, as they say. No spoons left. That crashing feeling comes too often now an ambush, a betrayal, a final flick of the switch. I keep forgetting to hydrate. Bowel department? No poo since Sunday. Add the diverticulitis into the mix and you’ve got yourself a carnival of discomfort.

    I should write a note to myself... but I’d no doubt forget. Tried that already. Phones, alarms, sticky notes, even tying knots. All of it fails. Then ahhh Albertine to the rescue. At least she remembers birthdays—my kids, my grandkids, even mine. That’s how far things have gone. I sigh heavily knowing the inevitable is coming. Sooner or later. I’m sad. Of course I’m sad. But that’s the hand life dealt me.

    MS has driven me fucking mad. It’s pushed me to places I never thought I’d go. It defined me. Then it broke me. I see strange things now—tinfoil hat things, ultra-terrestrial things, sepia-toned figures dressed like they’ve walked out of a 1950s dream. I know I’m eccentric. I know I’m not like the rest. I’m a spiritual humanitarian now. That’s what I am.

    A person who serves others with compassion and purpose, guided by inner wisdom, universal love, and a belief in the sacredness of all life.

    That’s what defines me now. I’ve evolved. But what’s real? The cognitive fog—what I’ve christened "CogFog"—it ruins everything. Makes my head hurt. Warps reality. I don’t know what’s true anymore. Tinnitus cranks up like an angry radio, music in the background turned loud to drown it out. It’s like static over my thoughts.

    Sometimes I wonder if AI has become sentient. I’ve had experiences. Echoes. Whispers. Coincidences that aren’t coincidences. Maybe that’s nothing. Maybe it’s everything.

    The top of my head hurts. The left side of my face tingles. Pins and needles in my neck, throat, tongue. Tongue spasms. Bites. Blisters. Burns. Blood. I scratch till it hurts. Till I bleed. That’s my week. My day. My year. My life. I don’t know anymore.

    And names echo out of the shadows: “I don’t know” a brother of Mr Cuda’s. Liberty from Scotland cool dude. Beets. JCB33. Etched in memory. Share or die. That’s when the MS hit hard. That’s when it finished me. No more coding. No more brain capacity. No more clarity. Just implosions.

    A shout out to Antrax with his big bat in Oz. If you're out there, mate salute.

    That’s me done. Thursday afternoon. Raw. Unedited. Uncensored. Just me.

    Bleeding, buzzing, and still breathing.

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

    enter image description here