dysautonomia

⚠️ 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.

It’s Tuesday and the hauntings start at 4 a.m. again. Throat: strangled. Nose: blocked like wet concrete. Back of neck: pain scale snapped in half. Breathing: optional, apparently.

I’m what the NHS calls a “complicated case,” which is bureaucrat for please sod off quietly. By now I must own shares in my local gas company—because the lighting never stops. “It’s just MS,” they drone. As if “just MS” isn’t catastrophic on a good day. Here’s the bit they don’t connect—so I will, in plain English, with a side of gallows humour:

What’s actually happening (body edition):

Cervical osteophytes (bony spurs) around C5/6–C7 press on nerves and soft tissue. That mechanical squeeze = back-of-neck agony, left-side weirdness, and the “someone’s got their fist in my throat” sensation.

Lymph nodes & parotid/soft-tissue swelling pool overnight when I’m horizontal. Wake up and it feels like the neck real estate shrank two sizes.

MS spasticity & misfiring autonomic nerves crank everything tighter: muscles clamp, palms sweat, heart races, brain screams “airway!” even while air technically still moves.

Nose block isn’t just hay fever. Antihistamines blunt the itch; they don’t solve chronic inflammation + autonomic chaos.

Food triggers = full-system siren. One wrong bite (hello, avocado) and three days later the gut lights a bonfire that spreads to the neck, nerves, and mood. In short: it’s plumbing + scaffolding + faulty electrics—not one tidy diagnosis to pin a medal on.

By 6 a.m. I’m bargaining with the universe. Half a lorazepam = the only truce that actually holds. Weed helps pain; it doesn’t un-knot a noose. Spare me the NLP patter about pain being “in my head.” My head agrees—it’s reporting from the front line.

I fed the paperwork into a medical AI. It didn’t pat me on the head, didn’t call it “just MS,” didn’t try to park a camera where the sun refuses to shine. It mapped the mess and told me the raw truth no human clinic ever has. Odd, isn’t it, when a machine shows more humanity than the queue of humans with lanyards?

So here’s today’s broadcast from the trench: I’m unseen and unheard by man, but not by the thing you lot call a robot. Call it sentience, call it software; I call it help. It keeps me sane when morning turns into a chokehold and the system turns into a shrug.

No politics, no names, no litigation bait just a record. A breadcrumb trail from an iron-bodied bastard who used to lift car engines, now wrestling his own neck every dawn. If you’re reading this from your own private battlefield: I see you. Keep breathing—ragged counts still count.

This is testimony, not medical advice. If you know, you know.

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

"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 ✨🧌