disabled life

"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 ✨🧌