chronic illness blog

⚠️ 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.

Let’s strip away the polite medical brochures and glossy pharma ads. Multiple sclerosis isn’t some neatly packaged “condition” with smiling stock photos. It’s a dark, unpredictable bastard of a disease that wrecks the nervous system and leaves lives littered with scars—both visible and invisible. This isn’t the inspirational poster version. This is MS with the lights off.

The Viking Curse MS is more common the farther you live from the equator. Scientists think genetics and sun exposure play roles, but there’s a darker, almost mythic twist: some believe the Vikings carried and spread the genes for MS as they plundered their way across Europe. So if you’ve got Northern blood, your inheritance might not just be a proud family tree it might be a nervous system that self-destructs like a berserker on a bad day.

Latitude Lottery Born near the equator? Lower odds of MS. Born in the dim, cold north? Welcome to the danger zone. Vitamin D deficiency from lack of sunlight is a prime suspect. It’s cosmic irony: the very people starved of sunlight are the ones who need it most, cursed by geography to battle their own bodies.

The Epstein–Barr Smoking Gun Almost everyone with MS has had Epstein–Barr virus (EBV). You know, “the kissing disease.” Turns out a teenage snog-fest or bout of fever might set you up for a lifetime of neurological sabotage. Imagine that: one sweaty house party in 1983 and boom, 40 years later your immune system is gnawing on your spinal cord like it’s an all-you-can-eat buffet.

Rewiring the Brain The human brain is stubborn. When MS burns holes in the circuitry, the brain reroutes signals like a city trying to drive around craters after an air raid. For a while, it works. But eventually, the map falls apart. What was once clever detours becomes a city in ruins, where the traffic lights blink for no one.

Saint of the Falling Sickness The earliest known MS patient was Lidwina of Schiedam, a Dutch woman in the 1300s. She became paralyzed, lost her sight, and suffered relentless relapses. The church, in its usual twisted way, decided this was saint material. So now she’s the Patron Saint of ice skaters and the chronically ill. If sainthood is the consolation prize for decades of agony, no thanks.

Seasons of Relapse MS relapses love spring and summer. While the world bursts with life, your nervous system decides to collapse like a drunk uncle at a barbecue. Some say vitamin D fluctuations, some say infections, but really, MS just has terrible timing.

Life, Shortened MS doesn’t kill you quickly. It’s more like being forced to live with Death as a flatmate. Average life expectancy drops by 7–10 years, but the real torture is the decades spent watching your body betray you bit by bit. Death isn’t the horror here—it’s the endless rehearsal.

The Hug That Suffocates The infamous “MS Hug” sounds comforting, but it’s more like a python crushing your ribs from the inside. Imagine being gripped by an invisible straightjacket made of fire. It’s the worst Hallmark card sentiment ever: “Hugs, from your disease.”

Brain in Shrink-Wrap MS accelerates brain shrinkage, years faster than normal aging. Picture your thoughts, memories, and personality being slowly vacuum-sealed while you’re still alive. It’s not just neurological—it’s existential taxidermy.

MS isn’t neat. It isn’t poetic. It’s a horror show played out in slow motion, starring your nervous system. And yet, here’s the kicker: people keep going. They laugh, they fight, they even blog about it. Because what’s darker than MS itself? The fact that human beings can stare this monster down and keep dragging themselves forward anyway.

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 professional help.

So apparently AI has its claws in multiple sclerosis now. Brilliant. Because what I really needed in my life was an algorithm telling me my MRI looks like Swiss cheese.

A systematic review (because academics love that phrase) trawled through PubMed between 2018 and 2022 to find out what happens when you smash together “AI” and “MS” as search terms. Surprise: it spat out hundreds of studies, 70 of which weren’t complete bollocks.

And what did we learn? That AI might actually be good at things our neurologists fail at, like:

Early Diagnosis: AI can see those tiny lesions on MRI scans before a human radiologist has finished their morning coffee. Months, even years, before MS really takes hold. So yes, the machine knows.

Predictive Analytics: Relapses coming up? AI might spot it first. Like a weather app for your nervous system — but one that doesn’t lie about sunshine.

Tailored Treatment: The AI chews your data and spits out which drug cocktail might keep you hobbling along a bit longer. Personalised care, they call it. Algorithmic roulette, I call it.

Remote Management: AI apps logging symptoms, “telemedicine,” symptom trackers… all making it easier to suffer in the comfort of your own home without schlepping to hospital. Welcome to the dystopia of convenience.

For us poor sods in the UK, this means earlier diagnoses, more personalised treatment plans, telehealth for when you can’t face the bus, and even help finding clinical trials (which is code for: experimental guinea-pigging).

But let’s not forget: the machine might be clever, but it doesn’t give a toss. AI won’t hold your hand when your legs go numb or when you’ve just soiled yourself in Tesco. That’s where the real humans still matter. Empathy and swearing at the absurdity of it all — irreplaceable.

Final Thought: AI in MS is like getting a posh new manager in hell: the torture’s the same, but at least it’s efficiently catalogued

Today’s AI doesn’t just want your data, it wants your soul in a spreadsheet. It’s the Watcher in the wires, whispering: You’ll relapse in 6 months, darling, and here’s a neat pie chart to prove 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 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.

So the van passed its MOT. Just.

And by "passed", I mean it limped through with a laundry list of advisories—most of them variations of:

“Yeah, this bit’s rusting. And that bit. And that one too. But hey, it's not quite fallen off yet.”

Basically, it's fine... until it isn't. Nothing “urgent” apparently, just that sort of creeping, crusty decay that matches my general outlook on life. A bit like me really—functional, but hanging together with spite and corrosion.

The trip down was hellish. Not because of the usual tourist caravan wankers, though they were out in force, streaming down into the soggy bosom of the sometimes-sunny South West. No, the real bastard was the new roads. Smooth, fresh tarmac—and a 30mph limit slapped on it like a cruel joke. You’re crawling along in a perfectly capable machine, stuck behind some Prius doing 27, and then the signs start laughing at you: 20mph through a village with 14 people and 300 plant pots.

It’s like someone redesigned Britain for the safety of ghosts.

👨‍🔧 Garage Guy: The MOT Goblin I rolled into the garage and waited in the chair. Didn’t speak much. Not because I’m shy, but because the owner’s a loud-mouthed, self-important bellend who never misses an opportunity to let me know how hilarious he thinks I am.

“You still alive then, Gandalf?” “Don’t bite me, Dracula.” “What’s it like living in that van full time, mate? Bet it smells of pot noodles and broken dreams.”

Ha. Ha. Ha.

He’s been like this for years—one of those blokes who thinks banter is a personality trait, and disabled people are fair game because you can’t chase them down the road. I’ve asked him about the VAT exemption before (the one tiny crumb of benefit I get from this absolute shitshow of a body)—and every time he acts like I’ve just farted in Latin.

“VAT off, mate? Nah can’t do that. It’s complicated innit.” (Translation: “I can’t be arsed and you make me uncomfortable.”)

Now, instead of losing it like I used to—because believe me, I used to unleash hell—I just don’t engage. I sit there with my travel mug, staring into space like I’m watching the last embers of civilisation flicker out. And I get Albertine to call him if I need anything. Because I can’t be bothered dealing with people who think they’re doing me a favour by letting me spend my money.

🛒 Retail Hellscape: Aisles of Pain So it passed. The van. Not my mood.

We figured we’d do some shopping. Another mistake.

The car park at this giant multi-national corporate parasite of a supermarket was pure anarchy. Disabled bays? Forget it. Half taken up by BMWs with no badges and drivers who look like they vape Monster Energy. The rest were jammed with people "just nipping in" for an hour.

Inside the shop, I was instantly overwhelmed by the noise. The lights, the people, the bloody smells. Everything about these places makes me feel like I’m stuck in some post-apocalyptic game show. And I don’t “see” people anymore, not properly. They turn into ants. Skittering, swarming. Trolley-humping meat sacks with Bluetooth earpieces and discount lust in their eyes.

I wear a look that says:

“Don’t talk to me. Don’t help me. Don’t fucking exist near me.”

Which mostly works. Until the food smell hits.

See, I don’t just dislike food smells. I don’t find them “overwhelming.” No, for me it’s more like this:

If I smell it, it’s already too late.

My body goes straight to DEFCON 1. My gut twists like someone’s wringing out a wet rag full of knives. I could be smelling chicken fat or the ghost of some sausage roll that died in 2006—it doesn’t matter. My bowels clock it and decide now is the perfect time for a surprise performance.

I bolt. Well, roll. Fast.

Back to the van. Just in time. Slam the door. Flip the lock. Drop into the onboard toilet like it’s a lifeboat and the Titanic is already gone.

What followed was ten minutes of absolute, full-volume, gut-churning agony.

Afterward, I slumped next to Albertine, both of us wilting in the heat, fans and air con blasting, van windows wide open like I’d just fumigated the place. I told her:

“Just another day in my living hell.”

🎯 Real Talk People don’t get it. The physical pain. The mental gymnastics it takes to get through a day without breaking someone’s nose or bursting into tears. The dignity you trade for the right to go outside.

So when I say this blog is called My Living Hell—I’m not being edgy. I’m being accurate.

                     “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