disabled life

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.”

Let’s talk piss and shit. No frills. No sugar. Just the raw, soggy truth of what it’s like when your body declares independence from basic toilet protocols.

Bladder Hell: The Yellow Frontline Ah yes, the dreaded leak that moment you realise your trousers are no longer allies but soaking, complicit traitors. I was in my 40s when my bladder started acting like a temperamental toddler on a diet of Red Bull and rage. First it was the "can't pee" problem standing there like a statue, nothing but the occasional drip as if my urethra had stage fright.

Then came the grand reversal: involuntary leaks. And by "leaks," I mean a full-scale Niagara event, unprovoked and unapologetic. I tried everything. No drinks after 5pm. Strategic peeing. Mental negotiation. Nada. Still I’d wake up in a puddle like some pissy version of The Little Mermaid.

Doctors? Oh please. Gaslit for 40 years. "Well, you're getting older." "Try pelvic floor exercises." Mate, my pelvic floor is about as stable as a jelly trampoline.

But here's the kicker: you learn humility. You either cry about it or laugh darkly while rattling down the road in your three-wheeled piss trolley of doom, trailing a golden hue and existential dread.

The Brown Files: Tales from the Other End If the bladder doesn’t get you, your bowels surely will. MS gives you the delightful choice between constipation so hard it requires an exorcism, or the soft, sticky sneak attack that turns underwear into a crime scene.

Let’s break it down:

Numb arsehole? Check.

Dead rectal nerves? Of course.

Surprise poo party mid Tesco visit? You bet.

Walking like a guilty toddler trying to hide it? Standard.

Doctors again? "Try laxatives!" Yeah, thanks. Nothing like chemical napalm to turn your ring into the gates of Mordor. You want a real solution?

💡 Hydration. 💡 Diet. 💡 And a bloody bum washer.

That’s right. Stop sandpapering your crack with cheap loo roll. Install a bum washer attachment. Use aloe wipes, keep essential oils to hand, and for the love of whatever gods you follow, always carry spare underwear.

Because nothing screams confidence like shitting yourself in public and power walking with a face like you've seen God and he was laughing.

                       “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

"The vagus nerve is supposed to keep you alive. Mine seems to have a death wish. Living with MS means living with this burning wire misfiring 24/7.You can't see it. But it's killing me, slowly."

Let me introduce you to the nerve that’s been puppeteering my misery for 40 years:

🧠 The vagus nerve.

Longest cranial nerve in the body. Part of the autonomic nervous system. Runs from the brainstem all the way down into your guts, like a bastard serpent lodged in flesh.

It’s meant to regulate “involuntary” things. Heart rate. Breathing. Digestion. Mood. Inflammation.

Mine regulates suffering.

With MS in the mix, my vagus nerve is like a drunk electrician with a machete and a grudge.

— My heart rate drops so low I black out. — Then shoots so high I think I’m dying. — My diaphragm spasms and I stop breathing mid-sentence. — My throat closes. — My stomach decides to reverse course — vomiting, choking, retching. — Food sits there, like a funeral buffet no one touches.

And the gaslighting begins. “Anxiety.” “Stress.” “Try mindfulness.”

Fuck off. I’m not hyperventilating. I’m being strangled from the inside by a goddamn nerve that's been glitching out since I was a teenager.

I’ve lived four decades like this. Forty years of waking up choking. Forty years of feeling my own body betray me. Forty years of doctors shrugging, guessing, dismissing, or overdosing me on meds for symptoms they don’t understand.

It’s not just discomfort. It’s unrelenting bodily horror.

Imagine being electrocuted through your spine while trying to eat a sandwich. Imagine trying to breathe but your diaphragm spasms like a car crash in your ribs. Imagine shitting yourself with a heart rate of 40 and then vomiting while you go unconscious.

You ever had diaphragmatic myoclonus? That charming thing where your gut convulses so violently you can’t breathe or speak? That’s the vagus nerve on a rampage.

People talk about Vagus Nerve Stimulation like it’s hope in a box. Sure. Stick electrodes in my neck. I’ll try anything once — hell, at this point, if you told me licking a toad would help, I’d be Frenching Kermit by tea time.

I’ve been laughed at. Medicated into a coma. Ignored.

This isn’t just MS. This is autonomic hell.

So yeah — fuck the diagrams and polite educational pamphlets.

My vagus nerve isn’t a calming force. It’s a loaded gun wired to my internal organs.

And some days, I honestly think it’s trying to finish the job.

And yet — here I am. Still alive. Still typing. Still wheezing and swallowing around the broken circuitry that is my body.

You want honesty? This is it.

Welcome to my living hell.

    “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 ✨🧌

Myself and Albertine braved the outside world this morning. It’s been some time since I’ve actually wanted to go out—so naturally, the universe decided to make it weird.

I dragged myself to the WAV. A WAV? Oh, just a terrifying machine of fraud and deception. It’s a van with a ramp. You know, so us wheelchair folk can daringly leave the house. But sure, call the cops. A disabled person going outside must be running a benefits racket.

Albertine, ever observant, pointed out a sad little scene nearby: a VW Transporter clamped and stickered with a huge “NO TAX PAID” label slapped across it like the scarlet letter. I thought, poor bastard—he's not going to have a good day. Judy Tzuke came on the radio, and I promptly drifted off into a cloud of melancholy '80s nostalgia. Classic distraction technique.

We were off early to dodge the traffic. That failed. We ended up 15 miles down the road to drop off a parcel at a UPS pickup point. We had all the paperwork—like law-abiding goblins—but of course, they wouldn't accept it. Apparently, logic has been abolished. Albertine was not amused. Neither was I.

So off we went in search of a broom and some blood, fish and bone (don’t ask). Jim’s store was next—where they usually stock everything including the Ark of the Covenant and possibly a spare Dalek. Staff there? Absolute legends. Cheerful, helpful, and oddly rock-and-roll. I’m convinced the guy who served me was in The Cult.

By this point, the heat was medieval, and my legs started their traditional performance of “Jelly in a Wind Tunnel.” We turned back for home—well, 15 miles back, as you do. I wasn't driving by then. I felt like death but with worse skin.

We spent the journey dodging speed cameras and holiday invaders. Then came the ambulance incident: some driver got scared, panicked at a crossing with one of those traffic bollards, pulled over, and the ambulance ended up overtaking on our side. Straight at us. We’ve got it on dash cam. Lovely.

And then... ah yes. The infamous chemist.

I rolled up to the giant vending machine of doom, typed in my little code, and the robot began its business. Fun fact: My local chemist now has a drug-dispensing robot. It quietly hands out morphine with a beep and a spin. But god forbid I need pain relief—then it’s forms, suspicion, and a full background check. The machine is trusted. I am not.

Anyway, the carousel spun, made strange noises, and then freaked out. Loud grinding, beeping, flashing lights—like R2-D2 on crack. The pharmacist shouted, “You’ve broken my machine!”

I just looked at her. And laughed. Of course I did. The Goblin strikes again.

To round off the day, I had to fork out £325 (no VAT, lucky me!) for a new wheelchair battery—yes, that’s to replace Albertine’s. Still no word from wheelchair services. I’m stuck. I’m pissed off. And this heat can do one.

I’m totally drained—every spoon spent. Now to hydrate, spark a joint, and marvel at how Windows 11 didn’t crash today. Small victories.

Rock star Jim’s guy, if you’re reading this—your secret’s safe.

But seriously—what a bloody day.

     “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 ✨🧌