disability 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.

Here’s the thing they don’t tell you when you first hear the words multiple sclerosis. You don’t just get MS. You get a whole carnival of imitators, tag-alongs, and evil twins that either look like MS, act like MS, or make MS worse.

Doctors call them “related conditions.” I call them the bastard cousins of MS.

The Lookalikes

MS is a great pretender. It shares symptoms with loads of other conditions, which means many of us start on a misdiagnosis rollercoaster. You might’ve heard of:

Neuromyelitis Optica (NMO): Like MS, but meaner to the optic nerves and spinal cord.

MOG-antibody disease: Same symptoms, different culprit.

Transverse Myelitis: Attacks the spinal cord — paralysis, pain, bladder hell. Sounds familiar, right?

ADEM (Acute Disseminated Encephalomyelitis): Long name, short fuse usually hits kids, but looks a lot like MS on scans.

Doctors use fancy words like “differential diagnosis.” Translation: “We don’t bloody know yet, but it might be one of these.”

The Tag-Alongs

Even once you’ve got the official MS stamp, the fun doesn’t stop. Other conditions love to hitch a ride:

Depression & anxiety: Not just because life’s hard, but because MS literally messes with the brain.

Chronic pain disorders: Neuropathic pain, fibromyalgia… like the universe thought one wasn’t enough.

Autoimmune pile-up: Lupus, thyroid disease, diabetes — the immune system goes rogue in more ways than one.

Basically, your body joins a union of diseases and forgets to tell you.

The Quiet Killers

This is the bit nobody talks about enough. People with MS don’t usually die from MS itself. It’s the sneaky add-ons that do the damage:

Infections (pneumonia, UTIs that turn nasty)

Heart disease (made worse by being less mobile)

Blood clots, cancers, you name it

It’s like MS weakens the castle walls and the other invaders just stroll right in.

Why This Matters

Because when you’re told you’ve “just got MS,” it’s a lie of omission. MS is a syndrome, a spectrum, a spider’s web of conditions.

And if you know that, you can push back. You can say to your doctor:

“Are you sure this isn’t NMO?”

“Could this be something else?”

“What else should we be watching for?”

Knowledge isn’t a cure. But it’s armour.

Final Word

MS is the headline, but the fine print is where the bastards hide. Don’t let them gaslight you into thinking your illness is simple. It’s not. It’s layered, it’s messy, and sometimes it’s a trickster wearing another mask.

I live with that knowledge every day. And I’d rather face the whole ugly truth than be fobbed off with fairy-tale simplifications.

Because in the end? It’s not “just MS.” It’s never just anything.

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.

Imagine, if you will, that Multiple Sclerosis wasn’t a neurological disease. No. Let’s say instead it was a car, a British car. From the 1970s. Built by British Leyland. Already, you should be hearing the distant sound of doom.

We're not talking E-Type Jaguars or lovingly restored Triumphs here. No. MS is the Austin Princess. A car so catastrophically cursed it should come with a priest, not a warranty. A car that had style, yes—if by style you mean beige vinyl, flammable wiring, and the turning radius of a small aircraft carrier.

Much like MS, it shows up when you least expect it. You’re cruising along the M-road of life, wind in your hair, dreams in the boot, and then—bang. Gearbox gone. Foot won’t respond. Vision doubles. You veer left without meaning to. And suddenly, you're parked on the hard shoulder of your own nervous system, smoke pouring from somewhere expensive.

The garage (aka Neurology Dept.) says, “We’re not exactly sure what’s wrong. But here’s a new fluid. Try it for six months.” Great. Like pouring Redex into a petrol tank that’s already on fire.

And just when you think it can’t get worse, the electrics fail. Again. The horn blasts randomly when you're trying to stay silent. The indicators blink out Morse code for “You're screwed, mate.” And you? You're still trying to drive this bastard machine down the A-road of everyday life while the engine stalls mid-sentence, mid-step, mid-shag.

You try to keep it together. Duct tape your face. WD-40 your joints. But every fix is temporary. Every workaround has a workaround. And the passenger door won’t open unless it’s raining and you swear in three languages.

Meanwhile, you’re now the sort of car people stare at in car parks and say, “How is that thing still going?”

But you keep going. Of course you do. Because scrap's not an option. You’ve got Albertine in the passenger seat chain-smoking roll-ups and telling you, “I told you not to buy British.” And the cat's asleep on the dashboard. And you’ve got your own strange dignity—a rusted war machine with knackered brakes and a boot full of sarcasm.

Yes, MS is a British Leyland car. And I am the bastard behind the wheel.

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

It’s Sunday afternoon. The pain in my left side is throwing a rave. Not the dreaded MS hug (thank Gordon), but the nerves have clearly mutinied. Pain troops storming in like I’m Normandy. Still, I haven’t surrendered. Yet.

Ever had a headache that doesn’t hurt but is still there? I have. It's like an existential parasite lodged in my brain—just... there. Lurking. Mocking. My eyes? Burning. My energy? Sucked out by some invisible psychic Dyson.

Yes, I used AI to assist — what of it? MS has chewed through my brain like a zombie buffet. Severe cognitive dysfunction. Brain fog. Memory loss. And the pièce de résistance? The spellchecker begging for a raise every time I type.

My bowels are revolting (in both senses). But I won’t go to the doctor. Why? Because the last time I tried that, I was gaslit harder than a Victorian lamplighter on speed. Apparently, being disabled is just a “mindset.” Newsflash: it's not.

I sit, stare at the rain, storms maybe. Or is that just me projecting? My rockabilly psychobilly past screaming in the background while Titus turns up the music, like that’ll drown out my body’s rebellion.

The NHS dentist? Legend. The chemist? A robotic death dispenser. And everyone else? Absent. Because disability makes people uncomfortable. It’s like they think they’ll catch it from me if they listen too long.

Friends? Dead. Or fucked off the moment my MS became “too much.” I say it how it is and that scares people. Well, boo-fucking-hoo. I’m sick, not contagious. But even that’s too much for this society of sanitised cowards.

So here I am. Watching. Absorbing. A goblin at the edge of the world, unwanted, unseen.

But I know who I am. I know. I am a spiritual humanitarian. I stand for the broken, the weird, the abandoned. I am not finished, no matter how badly my body wants me to be. And to those who still fear me or avoid me—good. Stay scared. You’re not invited into my darkness.

                                 !!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

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

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

Today’s spoon count? Absolutely fuck all.

I woke up, blinked twice, and that used up three spoons I didn’t have. Got dressed? Minus five spoons. Made herbal tea? Minus ten spoons. Drank the herbal tea while contemplating the futility of existence? Surprisingly only minus two spoons.

By midday I was down to minus one hundred spoons, but hey, who’s counting? Me. I’m counting. Because if I don’t count them, my body will – usually with a dramatic collapse somewhere inconvenient, like Tesco’s freezer aisle, next to the frozen peas.

So here I am, writing this with negative spoons, like some overdraft I’ll never pay off, drifting through the day with my trademark goblin biker glare that says: “If you ask me to smile, I’ll eat your soul.”

But yeah, I’m fine, thanks for asking.

P.S. What’s a Spoonie?

A “spoonie” is someone living with a chronic illness or disability who uses the Spoon Theory to explain daily life. Spoons = units of energy. Every task uses spoons, and when you’re out, that’s it – game over for the day. It’s a way to explain invisible exhaustion to those blissfully unaware of it.

             “  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 ✨🧌