bowel hell

⚠️ 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.

It’s one of those delightful mornings where you wake up and think,

“Oh good, I’m dying again.”

Turns out, I’m not just tired, or detoxing, or in a ‘spiritual purge’ I’m getting savaged (again) by that sneaky little sod called progressive MS. Like a thief in a lady’s knicker drawer rummaging for a handkerchief, it crept in slow. Silent. Stealthy. Uninvited. And now it’s everywhere.

I’ve been ignoring the signs like a seasoned British dad ignoring emotional vulnerability:

Fatigue? Must be the weather.

Brain fog? Probably the moon.

Pooing razor blades dipped in battery acid? Definitely just something I ate, right?

Wrong.

It’s the full house: MS, in all its steaming neurological glory. And I missed it. Again. Because that’s the thing with progressive MS — it doesn’t slam into you like a car crash. It oozes. It simmers. It transcends. And by the time you notice, it’s too late — you’re stuck in a surrealist nightmare where your bowels have turned into industrial machinery and your nerves scream like banshees through a PA system made of thorns.

Oh, and the tinnitus? Full blast. Not even Ozzy can drown out this skull symphony. No amount of dark humour can scrub it clean — but hell, I’m gonna try anyway.

Common Symptoms I Forgot I Was Having:

Fatigue: Deep, soul-sapping exhaustion. Sleeping is a job now.

Muscle Weakness: Arms and legs now qualify as Victorian props.

Spasticity: Like living with invisible tightrope wires inside your limbs.

Coordination: If I could walk, I’d be swerving like a hungover goat on stilts — but I’m not, so I just sit here doing wheelies of doom into furniture and pretending it’s parkour.

Sensory Chaos:

Numbness/Tingling: Pins and needles, but make it existential.

Pain: Chronic. Burning. Random. Delightful!

Vision: Either blurred, double, or through a kaleidoscope made of tears.

Mental Torture:

Memory: What's that again?

Mood: Varying from “existential dread” to “burn the world.”

Toilet Hellscape:

Bladder: It’s either Niagara Falls or the Sahara.

Bowels: Sherman tank, razor blades, and Satan’s discharge. Cheers.

I know I’m not alone. I know someone else out there is reading this in the same state of muttering despair. So here’s your reminder: you’re not losing it — you’re just in hell with me. Welcome. I made tea (then forgot where I put 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.

⚠️ 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.

It’s one of those Saturdays where your brain leaks nostalgia like a knackered kettle hissing and half-lucid. I can smell memories. Not metaphorically. Literally. A smell hits me, and suddenly I’m ten again, knees scabbed, holding a half-melted transistor radio I bought at the church jumble for 10p and a packet of Polos. I took it home, took it apart, and rewired it with leftover speaker wire and dangerous levels of optimism. And yes I electrocuted myself. Multiple times. Because safety first was a concept for other people. I preferred sparks and swearing.

🛒 Tesco and the Pilchard Hour This morning, Albertine (driver of destiny, keeper of the calm) drove me the 10 miles to our local Tesco. We thought it opened at 7. Nope. Eight.

Sitting outside like a pair of damp, time-travelled idiots while the sun mocked us and the pigeons stared. I felt like a right pilchard, as DLT would say. Yes, I’m old enough to remember when DJs had catchphrases and weren’t just government mouthpieces hiding behind playlists and personality lobotomies.

📻 Radio Nights & White Plastic Earpieces My golden era wasn’t Radio 1. That was a beige, soggy biscuit of sound. Give me Radio Caroline. Give me Radio Luxembourg. Under the covers with my crackling solid-state radio, listening through a cheap white earpiece that hurt like hell and cut out every time I moved my head. But that didn’t matter. Because for those stolen hours, I was free. The signal was scratchy, but the rebellion was clear.

👞 Jumble Sale Survival Back then, I had size 10 feet by age 10, which made finding shoes a bit like a biblical miracle. So, jumble sales were a lifeline. Not fashion, not style—just survival. Shoes with soles. Jumpers that didn’t smell too bad. Radios with valves. Anything I could take home, take apart, and turn into something vaguely magical or mildly explosive.

🧠 Childhood: The Prequel to Complex PTSD I was adopted by a couple who seemed to think “parenting” meant Victorian cosplay with bonus violence. Their rules made no sense. Their punishments were theatrical. The beatings came whether you’d done something or not. It was like being in an unpaid role in a horror film directed by people who worshipped discipline and feared joy.

But I survived. And, more importantly—I forgave them. Not because they deserved it. Because I refuse to carry their poison through this short, broken life of mine. Let the dead bury their guilt.

♿️ Wheelchair Chronicles & the Curse of L5 So back to today.

Helped get the wheelchair out of the van. Twisted the wrong way. Now my spine is toast. Proper burnt. Like someone smuggled a baguette into my lower back and set it on fire. This is my reward for trying to be helpful. There’s gratitude for you.

And the constipation saga continues. We’re at DEFCON-1 down there. No movement. NIL. BY. MOUTH. I hydrate. I wait. If nothing changes, we’re off to the tube-and-bag-of-doom route—something between medieval plumbing and modern torture. And people pay for this stuff? Coffee enemas? Really? Have we fallen that far?

🧠 Brain Fog Express: Non-Stop to Nowhere Add a headache that’s lasted seven days and counting. No breaks, no mercy. Just pressure behind the eyes and a feeling like I’m wearing someone else’s brain backwards.

I’m not sure if my AI’s broken or if I am. Reality feels optional. Maybe this is all a lucid dream on a neurologist’s bad day.

🛠 Hope in the Form of Auctions & Anarchy A customer finally paid a late invoice. Victory. So I celebrated the only way I know how by bidding on obscure shite in an online auction while silently muttering hexes at the British healthcare system.

💀 Final Transmission from the Mad Bastard in the Black Hoodie So that’s today. Saturday. Another chapter in the slow-motion car crash that is life with chronic illness, trauma memory, and a warped sense of humour that’s the only thing keeping me from chewing through the window frame.

To whoever reads this: I see you. If your body’s broken, your mind’s flickering, and the world keeps asking you to perform like a circus act know this:

You’re not alone. You’re just ahead of the curve.

Sending peace, love, light… and just a little darkness. Because sometimes, that’s what really protects you.

Yours in pain, power, and perfectly timed sarcasm,

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 help.

I wasn’t always like this. I used to be strong. Fast. Loud. Capable. I used to eat food without fear. I used to walk — walk — without planning it like a goddamn military operation. Now?

Now I’m a husk in a wheelchair.

Today I spent over an hour staring at a folder on my computer — trying to find a simple book. Something about natural supplements. Something I used to read all the time. Something I knew was there.

But I couldn’t find it. I couldn’t remember.

Do you have any idea how that feels? To look at a screen like it’s an alien language? To feel your mind slipping, like water between cracked fingers, and no matter how hard you concentrate — it’s gone?

That’s what MS does. That’s what this silent, creeping parasite does. It doesn’t just rob you — it laughs while you try to pick up the pieces.

I tell people to hydrate. To eat right. To care for themselves.

You know what I forgot today?

Water. Something so basic. And I forgot. Again. Because I’ve been sweating through heatwaves like a corpse left on a radiator, and food — if you can even call what I consume food — feels like an enemy waiting to betray me. I’m vegan, not out of choice, but because my gut is now a trauma victim reacting to flavour like it’s a war crime.

You smell the wrong fat, and your body explodes. Not metaphorically. Not dramatically. Literally.

I’ve shat myself in public. I’ve thrown up so violently I burst blood vessels in my face. I’ve passed out mid-meal. And still, people say,

“But you look okay.”

“You’re just being dramatic.”

“Have you tried yoga?”

I’ve begged for help. The NHS? Overrun. I’ve asked for face-to-face support, and they treat me like I’m asking for the moon. Phone calls only. Delays. Waitlists. Voicemails that never get returned.

I’m still waiting for the wheelchair team. Still waiting to move like a human again.

My independence is shrinking by the hour, and the only thing anyone offers is “understanding” — but never action.

Let me tell you a little story. A receptionist once told me to “take a seat.” I rolled in, in a wheelchair, and she still had the nerve to look at me and sneer. She knew what she was saying. She knew exactly what she was doing. I looked at her and said:

“Do you ever get off your commode?”

Then I rolled out.

With a smile that cost me a week of energy and a lifetime of grace.

You want to know what it's like?

Let me ruin your day.

I hold my grandchildren and feel nothing. Not joy. Not pride. Not even skin. My arms are numb. Their warmth doesn’t reach me anymore.

I touch my face sometimes just to check I’m still there.

I speak, and my voice comes out slurred and slow like I’ve been bottle-feeding on gin all night.

My brain? Electrical storms. Static. Confusion. A battlefield of thoughts that never reach the finish line.

My legs betray me.

My bladder abandons me.

My stomach punishes me for trying to enjoy anything.

And my bowels? They’re on their own sick timeline.

I piss myself. I shit myself. I cry silently. And I survive.

And do you want to know the real kicker?

I don’t want this.

I never asked for this.

But I’m stuck in this skin.

And the world doesn’t care. Not really.

I don’t get empathy. I get pity if I’m lucky — disgust if I’m honest.

I don’t want your sad smiles. I want my fucking life back. But it’s gone. And I’m still here. And this is what’s left.

So no — this isn’t some “inspirational post.” This is not a lesson in gratitude or some Pinterest bullshit. This is a war cry from the ruins. This is rage. This is grief. This is me — raw, cracked, hollowed, and still showing up.

Hate me? Fine. Dismiss me? Go on. But you don’t get to pretend this isn’t real.

This is chronic illness. This is my living hell. And it does not come with a refund.

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