chronic pain

⚠️ 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.

My brain fog is crushing. Spasms and weird electric shocks twist through me; words and sentences scramble wrong. The tinnitus that constant, maddening noise won’t quit. Some days I just want to vanish. I watch my rescue dog sleep on the webcam and envy that calm so much it hurts. Everyone offers clichés and advice they’d never follow themselves. It’s exhausting.

I’ve asked to speak to my doctor again. I don’t know how it’ll go. If my guts blow up over the weekend I’m screwed. The dark thoughts creep in the part of me that imagines ending it and I hate that I think that. I need help. I need someone to actually see this and do something that changes it.

Right now I’m broken, sore, and furious. I’m still here, still fighting, but not because I want to be brave because I don’t have anything left but stubbornness.

MS isn’t cancer, but it’s its own kind of killer. It’s not Crohn’s, not ulcerative colitis I’ve had the scans, the cams, the lot. They shoved cameras where the sun don’t shine, took biopsies, waved a cheerful “nothing to worry about,” and sent me home with a sticker that says “reassured.” Fine on paper. Not fine in me.

Let me be blunt: they sliced into the wrong place. The red patches they found were right where my MS‑riddled nerves were already a mess. They cut, they biopsied, and they left me with nerves that used to hum now screaming in high‑voltage agony. I didn’t get better. I got scorched.

Picture me on the lavatory, clutching the edges of a stupid toilet that feels like a cliff pain so deep it isn’t even physical in the normal sense. It’s like someone rewired my insides to a broken amplifier and turned the volume to nuclear. Tears, bile, a clear spit‑drip from my mouth I can’t stop as my body fights to keep food down. I hold back vomit with every breath because the world tilts and the noise in my head goes white‑hot. I wish I were anywhere else. I wish I were normal. I wish for a million useless little things.

The scope was a circus. First prize: the doctor’s finger, the NHS lube, and the ASMR of humiliation. “Your prostate’s fine,” he says, smiling like a man who fixed a leaking tap. That’s the comedy of it they poke, they probe, they make notes, they rule out “nasty” things, then pat you on the head and go home while your nervous system burns.

Now the aftermath: neuropathic pain that laughs at paracetamol, spasms that feel like electric shocks through my guts and spine, brain fog that scrambles words until typing is a battle with my own brain, tinnitus that keeps me company like a sad little radio, dissociation so deep I sometimes watch someone else live my life. There are moments I cry because the pain and the not‑quite‑rightness of my head make me certain I’m splitting, losing the edges of myself. People hear me say it and step back like I’m contagious with honesty. The more truth I dump, the more people get uncomfortable and that’s lonely in its own corrosive way.

I can’t sleep properly. I can’t plan. Every day is punctuated by the possibility that my bowels will decide to implode at the worst possible moment. I’ve learned the humiliating art of pre‑emptive management and still get blindsided. I’m on edge all the time jacked into a nervous system that lies constantly.

And then there are the small, absurd consolations. My rescue dog Yopi decompressing on the webcam, stretching like a champion in her perfect dog‑world while I sit in mine and try not to dissolve. “Doggy wants a big poo,” the universe whispers, and I laugh like a madman because that’s the only way to keep from screaming. I even joke about the vet’s number in my phone because if my guts explode over the weekend, who do I call my vet or the NHS? It’s dark. It’s ridiculous. It’s my life.

So yes: not cancer. Not “nasty.” Just MS doing what MS does best wrecking the wiring and turning normal procedures into torches. The biopsy didn’t fix anything. It made certain spots of nerve tissue more violent, more reactive, more relentless. That “nothing to worry about” line sits in my records like a bad joke. It doesn’t help me when the nerves scream at night and the world feels like a bad transmission.

If you think this is melodrama, try living it. Try Googling “neuropathic bowel pain” with one hand while feeding yourself with the other when your head is full of static and your fingers don’t spell the words you mean. Try explaining to someone that the worst part isn’t dying it’s being trapped in a body that betrays you every hour while everyone treats the notes in your file as the whole story.

I’m not looking for pity. I want acknowledgement. I want the system to stop offering livestock‑level reassurance and actually treat the neuropathic hit the biopsy dealt. I want less suffering. I want some dignity back on the lavvy. I want someone to take seriously that “not cancer” isn’t the same as “not a problem.”

If that’s too much to ask, fine. I’ll keep shouting here where the noise won’t make anyone uncomfortable. Yopi will keep farting on camera. I’ll keep writing it down. The nerves might scream, but my voice crooked, bitter, and honest is 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 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ 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.

Living with MS? It’s not a bloody “journey.” It’s a one way trip on a bus you didn’t ask to get on, and the driver’s pissed. But if you can’t laugh about it, you’ll cry and honestly, crying is too much effort. Here’s my brutally honest guide to surviving the MS circus with what’s left of your dignity (and maybe your sense of humour).

1. Resilience in Adversity

Every day is an adventure, if by “adventure” you mean “why does my left leg feel like it’s made of mashed potato today?” Still, you learn to cope. Celebrate the small wins: got your socks on? Didn’t set fire to the kitchen? That’s basically the Olympics now.

2. Community and Connection

You’re not alone. There are thousands of us, all secretly hoping the next medical breakthrough is “working legs in a bottle.” Online support groups: sometimes uplifting, sometimes like herding cats on roller skates, but always someone awake at 3am.

3. Mindfulness and Self-Care

Meditation, yoga, interpretive dance with your Zimmer frame pick whatever keeps you sane. Some days self care is a long bath, other days it’s telling everyone to sod off and watching rubbish TV with a family size chocolate bar. No guilt allowed.

4. Advocacy and Awareness

Want to raise MS awareness? Just try explaining it to a “healthy” person: “No, it’s not contagious, yes, I look fine, and yes, I know it’s annoying I get to park closer to Tesco.” Write, rant, march, meme just make sure you get your voice out there. Or just send everyone this blog and save yourself the trouble.

5. Focus on What You Can Do

Forget what’s impossible focus on what’s just about possible if you squint hard enough. Start a blog, paint a masterpiece, or just master the art of napping with one eye open. Every step (or shuffle) forward is a win, even if it’s just to the fridge.

6. Gratitude and Positivity

Gratitude? Sure. I’m grateful I haven’t fallen on my arse today. Celebrate the tiny things: a hot cuppa, a good nap, finding your glasses on the second try. It’s not all unicorns and rainbows, but sometimes it’s enough.

7. Inspiration from Others

Some people with MS run marathons. Others run Netflix marathons. Both are impressive. Get inspired by anyone who’s still standing or even just sitting up without toppling over. If they can do it, so can you (sort of).

8. Hope for the Future

MS research is moving faster than I do after a double espresso. There’s always hope new drugs, better treatments, and one day, maybe a cure. Until then, hang on tight and keep your sense of humour sharp.

Conclusion

Your MS “journey” is yours alone but you’re not the only goblin crawling through this dark wood. Laugh at the madness, celebrate the wins, and never let anyone tell you how to feel. Welcome to the world of chronic badassery.

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.

Woke up yesterday and bit the tip of my tongue like a pro. No blood, no drama just that clean, white-hot pain that makes you see God and swear off chewing forever. Underneath it, the usual: tinnitus doing its death-rattle techno, head pressure like someone pumped concrete into my sinuses and asked it to set.

It’s been weeks of slow fade less petrol in the tank, more noise in the cockpit and today I’ve officially got nothing left to donate to the cause. The sky’s gone coal black, rain sharpening its knives, thunder warming up. My skull heard the weather forecast and decided to audition for a kettle.

So yes: I’m retreating to the slug. Curtains drawn. Horizontal. Negotiating a ceasefire with my own nervous system. If I don’t answer, assume I’m busy pretending to be furniture.

Peace to the good ones. Healing to the stubborn bits. Understanding for anyone fighting a body with a sense of humour. Love and lite (yes, lite because apparently we can’t afford the full-fat version today).

No medical advice, just field notes from the front line. If you know, you know. If you don’t, count your blessings and bring soup.

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

Ah yes, #WorldBrainDay — that special time of year when the world pretends to care about the human brain. How lovely. Shall we all have a think about thinking?

Meanwhile, over here, my brain’s doing its best impression of a soggy electrical circuit being attacked by invisible gremlins. MS doesn’t send flowers or awareness ribbons. It sends fire ants tap dancing on my nerves, brain fog thick enough to butter toast, and pain so sharp it could cut glass.

But go on, light a candle or post a heart emoji. That’ll fix it. 👍

I don’t need a day for my brain. I need a replacement. Preferably one that hasn’t been cooked in demon piss.

Still — here I am. Writing this blog, existing despite it all, swearing like a dockworker and laughing into the abyss. Because what else is there? I’m still here, you bastards. And that’s the real miracle.

Cheers, brain. You absolute shambles of a meat sponge.

– Mr Dark 📍 Currently lost in brain fog, do not disturb.

Footnotes from the Pit 🕳️

🧠 “Brain Fog” – Like trying to do a Sudoku underwater while someone shouts the wrong answers at you through a megaphone.

⚡ “Nerve pain” – Imagine licking a plug socket. Now imagine that sensation… in your spine.

🛠️ “Medical advice” – Includes gems like: “Just stay positive”, “Have you tried yoga?”, and my personal favourite: “It could be worse.”

🕯️ “Awareness Days” – 24 hours where we all pretend chronic illness is quirky and inspirational. Followed by 364 days of complete radio silence.

🎉 “Still here” – Not cured. Not better. Just stubborn. Very, very stubborn.

                                               **!!DISCLAIMER !!**

This blog shares raw and personal experiences with mental and physical health. Some posts may be triggering. I'm not a professional - just writing my truth. Please don't take this as medical advice.

                             “The views in this post are based on my personal    
                                experience. I do not intend harm, only honesty.”   

                        “By ink and breath and sacred rage, I write.
                                      By storm and silence, I survive.”

                              @goblinbloggeruk  -  sick@mylivinghell.co.uk

Woke up at 4am — not for a cosmic vision, no, just the usual pee pee ritual. And that was that. No sleep. Brain on, pain on, day ruined before it began.

Lemmy said it best: "No sleep 'til Hammersmith." Except I wasn’t heading for rock glory — I was limping toward a garage and a medical breakdown.

No brain fog . Tinnitus mercifully silent — probably saving itself for later. Pain? A knife twisting inside me like Satan’s letter opener.

But still, I had to drive. No meds allowed. NHS says suffer, so I did. Slid out of bed like a cursed slug, wheeled myself to the kitchen, food made it worse (of course), and then the bowel pain — oh the bowel pain.

You know you’ve hit rock bottom when you’re reminiscing about that one time on the NHS table, a camera going places no camera should ever go. We’ll save that horror show for another blog — or perhaps a full-blown gothic novel.

Still, I washed, dressed (miracle), and drove. I was in agony but present. Almost proud. Dropped the van at the new garage — not nasty Jim this time, thank Beelzebub. Just regular, decent humans. A miracle. Almost felt human.

Back in the chair. Felt like I’d been skinned emotionally. Called Albertine “Muriel” — sorry, love. The fog came in hard. Brain barely ticking. But the van passed its MOT — no advisories. So something went right.

Retirement soon. Thank the dark gods. Honestly didn’t think I’d make it this far.

Still here though. Still writing. Still surviving the fire.

          “The views in this post are based on my personal      
            experience. I do not intend harm, only honesty.”   

                     “By ink and breath and sacred rage, I write.
                               By storm and silence, I survive.”