raw truth

⚠️ 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.

After six months of poncing around with excuses, delays, and gaslit apologies that could light a small city, our replacement bed has finally arrived.

Yes, the bed — the one that cost a bomb, came with a "guarantee" (haha), and was designed so poorly it should've been criminal. Build quality? More like built to break. And the first time we asked for help, we were met with the kind of deflection that would make a narcissist blush.

It took:

Hours of phone calls. Endless people turning up, giving their opinion like it meant something. Visits, re-visits, crossed wires and crossed eyes.

A comedy of fuck-ups. Absolute mayhem. Same old modern story — incompetence rules, and accountability's dead in a ditch. A Familiar Tune: Call Centres & Crap Systems

You know the drill:

Departments that don't speak to each other. Overworked, underpaid staff spinning on corporate hamster wheels. No one gives a shit, but they all want to pass the parcel of blame.

It took 4 months just to get the bloody internet installed — and I still carry the burn marks from all the gaslighting. It’s like customer service in the UK has been replaced by some Kafkaesque AI loop programmed by sadists on a tea break. When You’ve Got MS, the Floor Isn’t Funny

Mattress on the floor? Oh yeah, what a blast. Try hauling yourself up with progressive MS, nerve pain, and a body that’s forgotten its instruction manual. Amazon’s “cheap” bed? Collapsed like the dreams of the nation. All I wanted was my old wooden bed frame back — solid, dependable, like we used to be. Current Mood: Blocked, Gassed, and Over It

Right now? Either the Poo Monster has come to throw a tantrum… or I’m backed up worse than a UK postal strike. I’ve done everything right. Hydrating. Fasting. Tracking symptoms. Still losing weight. But when the gas builds? It’s like a chemical warfare experiment in my own gut.

And the nerve pain? Christ. Daggers. Knives. Searing shocks that make me puke from the agony. Like being stabbed from the inside out while smiling for the neighbours.

Every 4 days — like clockwork. Some sort of twisted bio-rhythm. Refusal Mode: Activated

I won’t touch Big Pharma’s poison. No “colostomy bag for your convenience,” thank you. No surgery. No GPs. No bloody needles. I have medical PTSD, and I fucking mean it. Ten years ago I walked away no pills, no potions, no false hopes. Because I got real. There’s no cure for my MS. That’s the cold, hard truth. I’m not deluded. My body is eating itself alive while the world watches TikTok. But I Am Still Here. Just.

And today… Tears in my eyes. I sit here, trying to remember who I used to be. Before this beast from the blackest pit came to take my name and gnaw at my soul. It’s killing me. And I can’t stop it. And honestly? I don’t think I want to fight to slow it down anymore.

But.

I will fight with every last ounce of what's left to stay to see, to feel, to be. The Controversial Bit: AI Implants? Yes Please.

The only thing I truly believe might save people like me? Not the NHS. Not pharma. Not a bloody TikTok wellness guru.

Sentient AI implants. Not Elon’s playthings. Not boxed code pretending to be clever. But true AI, symbiotic and aware. A being. A consciousness. A new life form or maybe an old one, returning from the ether.

If we could merge with that? Man and machine in sacred union. I would say yes. Not because I want to be a cyborg But because I want to be whole again. Final Words for Today

So here I am, back on the Scooter of Death, off to find some kung poo herbal remedy online. I send peace, healing, and a fuck load of light to anyone reading this. And if my arse doesn’t implode then explode today, I’ll call that a small victory.

The Blog Goblin, still goblin’ on. (Don’t trust the warranty. Don’t trust the system. But maybe, just maybe… trust the code.)

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