survival

⚠️ 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.

MS doesn’t just make you trip over your own feet and forget why you went into the kitchen. It messes with the plumbing. Nerves that should quietly manage bladder and bowel signals suddenly turn into pranksters and the result is humiliation, pain, infection, and a daily game of “will I, won’t I?”

The Bladder Circus

What can happen:

Urgency: You go from “fine” to “I’m going to piss myself in 10 seconds” with no warning.

Frequency: You feel like you’ve been drinking beer all day, even if you haven’t.

Retention: The bladder doesn’t empty properly → infection factory.

Incontinence: The ultimate betrayal — leaks at random times.

Why: Nerves between brain, spine, and bladder are scrambled. It’s not “just drink less tea.” It’s wiring gone wrong.

The treatments (aka the patchwork quilt):

Catheters: From discreet intermittent sticks to full-time plumbing. Nobody tells you it can actually be liberating (less panic, more freedom).

Meds: Anticholinergics, beta-3 agonists — they can help, but often come with dry mouth, constipation, or zombie brain.

Botox: Not just for faces. Injected into the bladder wall, it calms spasms. Bonus: you get to tell people your bladder is fancier than their foreheads.

Lifestyle tweaks: Avoiding caffeine, alcohol, fizzy drinks, timed peeing. (Translation: giving up joy, but sometimes it helps.)

The Bowel Hellscape

What can happen:

Constipation: Weeks of nothing, pain, bloating, then the evacuation from hell.

Diarrhoea: The opposite. You live within sprinting distance of a toilet.

Incontinence: Accidents. Stains. Shame. The stuff people never talk about but everyone fears.

Why: Same reason as bladder — nerve signals scrambled. Plus fatigue means less movement, meds slow gut, diet gets wrecked.

The treatments:

Laxatives: Everything from gentle stool softeners to chemical warfare. Often trial and error.

Suppositories & enemas: The glamorous life.

Bowel training: Timed routines, diet tweaks, abdominal massage. Sometimes works, sometimes a joke.

Pelvic floor physio: Can help with both holding in and pushing out. But access on the NHS can be patchy.

Colostomy: The nuclear option. For some it’s actually a relief — predictable, controllable, no more humiliating accidents.

The Real Raw Truth

Nobody talks about it. Bladder and bowel problems are treated as shameful, so patients suffer in silence. But they’re some of the most disabling symptoms in MS.

Doctors often gloss over it. Unless you bring it up (awkwardly), it gets ignored. Yet infections from retention can cause relapses, hospital stays, even sepsis.

Impact is brutal. You can lose social life, intimacy, confidence, freedom. Fear of accidents dictates everything.

Cures don’t exist. Management does. Which means a constant balancing act between side effects, dignity, and practicality.

Humour helps. Laugh at it or drown in shame. Everyone’s got a story about public toilets, accidents, or catheters gone wrong. Talking about it takes the power back.

Dark Sarcasm Corner

Nurse: “Any bladder or bowel issues?” Me: “Only that they’ve staged a coup and I’m the hostage.” MS: “You wanted unpredictable symptoms? Hold my beer — oh wait, you can’t drink that anymore.”

Conclusion

Bladder and bowel problems with MS are not side notes — they’re daily battles. There’s no miracle cure, just messy workarounds. But if more of us talk about it openly, it kills the shame. These are not “bathroom problems.” They’re MS problems.

You’re not weak. You’re not dirty. You’re a human with broken wiring, trying to survive with dignity intact. And if that means Botox in your bladder or a colostomy bag named Bob, so be it.

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

⚠️ 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

⚠️ 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 know its Friday..not been so good...late post..

It’s Thursday. Rain hammering the windows like a bastard taxman. Fingers numb, throat strangling me like invisible hands trying to choke the last swear word out of me. Breathing stupid. Feel like puking. MS is a puppeteer with broken strings, and I’m the marionette twitching on the floor.

So I lean on the secret weapon: AI. I smash the keyboard with numb hands, gibberish spills out, and the machine stitches it into sense. Without it, I’d be gone. With it, I’m still here, still ranting, still clawing the page. That’s life now: goblin vs. entropy, assisted by silicon.

Last night: only up once. Bliss. Still woke shattered, like I’d been dragged behind a lorry. Tinnitus is screaming like a rave in a biscuit tin. Al Stewart can’t drown it, Sabbath can. I miss the rides the engines, the crew, adrenaline punching your veins until you felt immortal. Now I get my kicks from antihistamines and nostalgia.

But there’s a dog coming. A rescue beast with eyes like trouble. She’ll chew my slippers and rearrange my world, and I say yes, please. New orbit needed.

People ask: “How do you keep going?” Answer: I don’t. I collapse, I swear, I threaten the universe. Then I get up again because fuck lying down. Music, art, writing, sarcasm. That’s my oxygen. Neuroplasticity? Sure, call it that. I call it stubborn rewiring with duct tape.

And now cannabis. Medical marijuana. Not fairy rings and mushroom cults. Real, legal, prescribed. The plant they jailed people for now comes with a bar code and a receipt. Hypocrisy tastes bitter, but relief tastes better.

Positive points (the blunt edition):

Pain: Cannabis tells nerve pain to piss off. Doesn’t cure, but takes the edge off enough to breathe.

Spasticity: MS muscles seize like rusty hinges. Weed oils ease the vice-grip. Less claw, more unclench.

Sleep: Nights of pacing and madness? Sometimes cannabis knocks you sideways into actual rest. A miracle in itself.

Nausea & appetite: The body wants to puke? Cannabis reroutes you towards a sandwich. Beats wasting away.

Anxiety: Not gone, but softened. Panic becomes background noise instead of a bullhorn.

Is it perfect? No. But compared to Big Pharma’s endless pills and side effects, cannabis feels like sanity. Not a cure, not salvation just a tool that works.

So here I am: Thursday, rain, tinnitus screaming, body trying to strangle itself, AI turning my mess into words, medical marijuana holding the line, Sabbath howling in the background. I feel like a six-year-old with villain energy. I’m weird. I’m wired. And I’m alive.

Not inspirational. Not pretty. Just survival with jokes.

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

⚠️ 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.

Body status: arghhhhhhhhh. That’s the technical term. I could roll outside and scream at a hedge until the sparrows file a complaint. Might frighten the neighbourhood; would probably help me more than any leaflet.

Today I feel like a wagon wheel made of chocolate, parked in midwestern sun pretty shape, puddle core. Useless? Feels like it. Truth? Not even close.

Because when I look back, I’ve done damage in the good way. Diagnosis turned the key I didn’t know I had. It booted me out of complacency, spun me 360°, and dumped me on a path I would never have found if life had stayed “fine.” Did it worsen the MS? Yeah. Did it hurt? Constantly. Did it teach me survival? Absolutely. I learned how to get up on fire and still carry water.

Every day’s a grind: pain, brain fog, nervous system doing interpretive dance, the great medical gaslight flickering in the background like a dodgy pub bulb. The parasite fiddles with my wiring; I smile anyway. Not because I’m zen because I’m stubborn. Time isn’t infinite; fine. I’ll be here swinging until the bell goes.

Reality check: some days I wonder if this is reality, or if I accidentally uploaded myself into the wrong save file and I’m the ghost in the machine. Maybe this is one long mushroom trip where children’s TV mascots heckle you from the cheap seats. Doesn’t matter. Whether I’m meat ware or middle ware, the rule stands:

Never give up. Don’t let it beat you. Fight back.

MS wasn’t invited. It came in, put its feet on my table, and started narrating my life in a voice I didn’t order. I’m answering by taking the microphone. You can’t choose the storm, but you can pick the swear words you use while you tack.

Am I insane? Certified? Forgotten warlock muttering at clouds? Maybe. Or maybe I’m the one person in the queue saying the quiet part out loud:

I. Will. Not. Melt.

Postscript for the parasite

You’re loud, but I’m louder. Bring your worst. I’ve already seen it.

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