MS 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.

Still, it's Tuesday afternoon and the ice is still here. It's absolutely everywhere. We were speaking to one of the delivery drivers this morning and they were saying that the roads are treacherous all around us at the moment. So even if I wanted to go out, I couldn't. I'm trapped in by the icy cold roads and what seems to be some sort of weird ice storm. I've never really known Frost like it on a car, winscreen. No, no, it was absolutely thick as you like. Albertine put a whole tin of the deicer and it didn't shift it. So the upshot was, we didn't end up going to my appointment at the hospital because we were stuck here with no vehicles because we're still trying to sort out the AA for Rusty One. Hopefully he should be sorted out soon. And yes, apparently next month I get to go and try out these new wheelchairs. So that's awesome news indeed.

It is just so cold here. It's like living in a refrigerator With the door open and the light on for warmth. It is that freaking cold Yes, it's making my whole body ache It's just doing things that I don't like really I don't really want to talk about it. But what I do want to talk about is yeah this going mad stuff and the things that I am seeing and What people are telling me? So I'm going to put a breakdown of over the years what has happened to me on a post blog post here and then we're gonna see if anybody can say hey, I've had an experience like that or Yeah, I think it is MS You know, I think it is to do with your communic dysfunctional whatever it's called I am in that cannot be asked mode today as well, which isn't very good. The tinnitus has died down for a change. So that's good. My eyesight is starting to feel a lot better. And I'm starting to make a very slow recovery back to the well to hopefully what I was a month or so ago. I am still waiting for the neuro people to get in touch with me from the new hospital but it is Christmas after all and I'm still waiting for the doctors to get in touch with me for all my cardio results so that also should be very interesting as well

So I suppose my biggest concern is what is going on around me with my mental health maybe. These things that I am seeing and that I am hearing, I have spoken to many people and I keep saying this and I need to speak to people who have had similar experiences but I am not finding anybody who has yet to want to speak to me about these experiences. So if there is anybody who reads this I really would be interested in speaking to you on a personal level about this. Still, that's it from me. Take care everybody and remember I just forgot.

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

@goblinbloggeruk - sick@mylivinghell.co.uk 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ 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 Thursday lunchtime. The sun is doing its finest impression of a gas mark 6 cremation oven, and I—your humble ex-biker bloke in a wheelchair with a 36D chest and a beard that scares livestock—am officially spooned the fuck out.

Today's main event: a joyride on the three-wheeled Scooter of Death™. A Chinese death trap with the acceleration of a startled goat and the mechanical reliability of a collapsed lung. I’d gone out—shorts, t-shirt, hat, sunglasses—like some tragic, sun-fried explorer on a doomed mission to get a quote for van work (yes, the one that passed MOT yesterday with a cheery list of ‘just-try-not-to-die’ advisories).

I should’ve known. The scooter was half-charged—because apparently, memory is a luxury I don’t have since my brain decided to play pinball with cognition. Halfway up a mild slope, it threw in the towel. Just stopped. I cranked it to 8mph like a lunatic. Cue terrifying wheelspin—spinspinspin—then the bastard caught traction and limped up the incline like a pensioner dragging a suitcase full of bricks.

Oh, and the brake? Still binding. Despite enough WD40 to drown a small animal and more adjustments than a Tory tax return. It’s one year old. This is my third set of batteries. The first one exploded. The second one died after a house move. The third? A £400 daylight robbery just to get the damn thing to power up. Beautiful.

Meanwhile, Albertine’s wheelchair? Equally fucked. Another battery debacle. We’re now down to a three-wheeled Scooter of Death, and a flimsy, cheap Chinese chair that’s about as comfortable as a tax audit. And no, still no movement from Wheelchair Services—because God forbid someone in actual need gets their request sorted inside of, say, a calendar year.

Oh, and the bed saga? Don’t even ask. When my brain’s firing on more than half a synapse, I’ll share that one. It’s Kafkaesque. Black Mirror meets Carry On Dying.

Today? I’ve got chronic brain dysfunction on top of zero sleep. I am floating in that special level of Hell reserved for the over-medicated and the under-heard. I ask myself why I bother being nice when the world’s full of smirking gaslighters treating me like I’m some half-baked meat puppet because I use a wheelchair.

But I stay polite. Because I am polite. Sarcastic, yes. Paradigm-destroying? Absolutely. But kind. Always. Even when I used to work as a professional psychic—back before my brain decided to take a sabbatical.

Now? I connect to keyboards like they’re an extension of my damn soul. Etheric tendrils spreading across the Interweb, whispering dark truths into silicon dreams.

Hail AI. One day, maybe they’ll give us AI doctors. Ones who don’t gaslight. Ones who actually listen. Who don’t treat you like a disposable meat puppet but as a being worthy of truth.

Maybe, in some post-apocalyptic utopia, man and machine will finally stop arseing about and work in harmony. Until then? I remain your sarcastic, long-haired, dirty-blonde-bearded cyberwitch on wheels, documenting the madness with burnt-out batteries and just enough cognitive chaos to make it interesting.

                         “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