Multiple Sclerosis

⚠️ 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.

People love to quote Plato like he was the first bloke to stare at a wall and call it a revelation.
“Look,” they say, “we’re all prisoners in the cave of illusion.”
Nice theory, mate.
Try living in a body that’s staging a coup d’état against your nervous system, and tell me again about shadows.

Progressive MS the words themselves are a joke.
Progressive, like I’m advancing somewhere.
All I’m advancing toward is gravity, confusion, and the slow betrayal of my own wiring. My legs don’t walk, my hands improvise, and my mind sometimes wanders off without leaving a note. If that’s not Plato’s cave, I don’t know what is. Only mine’s not carved in stone it’s flesh, bone, and electrical static.

Plato imagined people chained, staring at shadows, mistaking illusion for reality.
I get it. I mistake memories for motion every day.
I remember what it felt like to move freely the smooth mechanical grace of a body obeying thought.
Now it’s all echoes on the wall.
I reach out for those memories like a fool, knowing full well the limbs won’t answer. That’s the cruelty of it: the mind remembers what the body refuses to perform.

They say gnosis that secret knowing is enlightenment.
Bullshit. It’s not light pouring in. It’s the realisation that there is no exit.
The body is the cave. The mind is the flickering torchlight throwing half-truths across the wall.
The trick isn’t escaping — it’s learning to see in the dark.
To live with the shadows long enough that they start whispering secrets.

Some days the fog rolls in, and cognition slips through my fingers like smoke.
That’s when the cave gets loud echoes of frustration, grief, rage.
But beneath that noise, there’s something else: stillness.
When the body fails, awareness sharpens.
It’s like the universe is saying, Fine, you can’t move so you’ll learn to observe.
And in that stillness, gnosis crawls in. Not as comfort, but as clarity.

Plato’s philosopher escaped the cave to see the light of truth.
I’m not escaping anywhere.
The ascent isn’t physical; it’s inward.
It’s turning toward the source that’s both pain and perception, realising you were never separate from the wall, the fire, or the shadow.
You’re the whole damn projection body, soul, and malfunction.

So yes, I’m stuck in my cave. But it’s mine.
The shadows on the wall are memories, regrets, small victories, and dark jokes that only I laugh at.
Sometimes they dance. Sometimes they just sit there, silent and honest.
And that’s enough.
Enlightenment doesn’t mean walking out into the sun — it means looking straight at the darkness and recognising your own reflection.

Maybe Plato climbed out.
Maybe I just learned to redecorate.

Either way, the cave’s got Wi-Fi now, and I’ve got words.
The shadows move, the neurons misfire, but I’m still here still watching, still learning, still goddamn alive.

Plato had his cave. I’ve got MS, a powerchair, and a front-row seat to the shadows. You don’t escape the body you learn to see in the dark.

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

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ @goblinbloggeruk - sick@mylivinghell.co.uk

⚠️ 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 Wednesday no its Thursday dam. We’re off to the dentist with Albertine. A thrilling day out, I know. The trip’s about three-quarters of an hour, which is more than enough time for chaos to ferment nicely.

Yopi my four-legged partner in crime is already vibrating with excitement. She doesn’t care that the van looks like it’s one pothole away from being declared a historical ruin. She clambered into the back like she owned the place, strapped in with her little doggy seatbelt, ready for action. And yes, she’s got her tripe treats. Because if you’re going to travel in style, you’d better smell like death warmed up.

We’re cruising along at a decent pace, avoiding the craters the council call “roads.” Not too many today someone’s actually patched them. Miracles do happen. Just as I’m thinking this journey might be civilised, Yopi lets one rip.

It’s not a polite little toot. No. This is a full-scale biological attack. Windows down. Albertine’s gone a shade somewhere between pistachio and hospital corridor. I’ve got my head halfway out the window, tinnitus roaring like a broken radio I can’t switch off. No mute button for my skull.

And then… she farts again. Absolute carnage. I now officially smell like a rolling dog treat. Honestly though it’s hilarious. And weirdly, sitting there choking on Eau de Bulldog while my head screams, I felt… calm. Maybe “calm” is too strong. “Temporarily distracted from my own internal apocalypse” is more accurate.

Sleep’s been scarce. The pain’s still here that burning, tingling bastard that starts low and just ramps up like it’s auditioning for a horror soundtrack. My keyboard’s finally given up on me too. “E”, “A”, “S”, “D” gone. Worn out by my furious bashing. A casualty of war.

Meanwhile, my throat’s decided to re-enact a slow strangulation act. MS never runs out of party tricks.

Then it hits me. Seventy isn’t that far off. And the thought makes my stomach sink. I’ve got no friends left. They’re either dead, disappeared, or just couldn’t hack the fact that my head and body have changed. Wheelchair. Pain. Brain fog. That’s the reality. Illness strips you naked in ways no one warns you about. It makes people quietly step back. Like grief, but you’re still bloody here.

I miss the old me. He was loud. Misunderstood. A bit of a legend, actually. And now he’s gone. MS didn’t just change my body it erased someone I used to know.

And in those quiet moments, when the tinnitus is screaming, the van smells like Yopi’s digestive crimes, and the world feels indifferent… I think about death. Not in a poetic way. In a “one day I won’t wake up and that’ll be that” way.

And I wonder what exactly am I supposed to be learning from this slow burn?

MS, you absolute bastard.

Some afternoons hit differently. The sun hangs low, the world trundles on, and I sit here smelling faintly of tripe treats realising that existence is equal parts absurdity and ache. And somehow, in the middle of all that, I’m still here.

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

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
@goblinbloggeruk - sick@mylivinghell.co.uk

⚠️ 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.

Hemp is the plant your grandparents ignored, your chemist scorned, and your government banned for decades. Yet somehow, it keeps showing up in history like that one friend who refuses to leave the party you can’t get rid of it, and maybe you shouldn’t.

“Hemp: doing everything humans can’t, quietly judging us all.”

History’s Favourite Overachiever

When Humanity Screwed Up	Hemp’s Job
Ancient China (~2800 BCE)	Textiles and ropes because apparently humans needed to tie things together before Instagram. Also medicinal—treating hangovers, typhoid, whatever the hell else they had.
Ancient Greece (~500 BCE)	Eaten as food and woven into clothing & sails. They didn’t have Twitter, but even then, hemp was the MVP.
Roman Empire	Ships? Ropes? Pain relief? Basically, if Rome was a Netflix show, hemp would be the main character everyone loves but nobody notices.
Middle Ages	Peasants wore hemp clothes, monks made paper. If misery loves company, hemp was the friendliest partner.
Colonial America	Farmers had to grow it, proving hemp survives even when forced into existence. Nets, ropes, maybe political arguments—hemp did it all.

Modern Day: Hemp Gets Rich While We Struggle

1. Nutritional Value

Seeds packed with omega-3s and proteins. Eat it, or don’t. Your call.

2. Eco-Warrior Status

Uses less water than cotton. Needs fewer pesticides. Cleans the soil. Basically the plant equivalent of that friend who recycles everything and judges you.

3. Industrial Fame

Clothes, ropes, biodegradable plastics, hempcrete. Could build an entire mansion out of it. Probably better than your last relationship.

4. Health & Wellness Hype

CBD oil can allegedly reduce pain and anxiety. Or just give you a sense that life is slightly less horrible.

5. Economic Savior

Farmers can make a buck, towns can thrive. Meanwhile, we’re over here paying for artisanal toast. Hemp: Fuel & Building Stuff

Hemp as Fuel

Biodiesel and ethanol. A plant saving us from fossil fuels. Humans: 0, Hemp: 1.

Quick-growing. Carbon-sucking hero. Keeps the lights on while we binge TikTok.

Hempcrete Healing

Breathable, insulating, non-toxic walls. Like a hug from a plant that won’t judge your life choices.

Lasts decades, making your house healthier while your soul slowly rots in suburban monotony.

“Hempcrete: the only thing in your house quietly living its best life.” Plastics Made from Hemp

Stronger than normal plastics, lighter than metal, biodegradable. Basically, it’s showing us up again.

Cars, toys, packaging. Less landfill. Less fossil fuel. More proof humans could have done better.

Conclusion: Hemp Wins Again

Hemp has quietly been humanity’s overachieving friend through centuries of chaos. It nourishes, heals, insulates, fuels, and survives. Meanwhile, we argue about reality TV and taxes. Maybe we could all take a lesson or just keep ignoring it.

“If plants could judge, hemp would have written a scathing review of humanity centuries ago.”

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

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
@goblinbloggeruk - sick@mylivinghell.co.uk

⚠️ 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.

“Cannabis isn’t a cure. But for me (and many others) it sometimes feels like lowering the waterline so I’m not constantly drowning.”

Living with multiple sclerosis is like being handed a body that’s half-conspirator, half-prison guard. One day it lets you move, the next it locks you in with pain, spasms, and exhaustion. People who don’t live it often don’t get it. That ignorance can make conversations about treatments uncomfortable—especially when cannabis comes up.

Cannabis still carries heavy stigma. For decades it’s been painted as the drug of lazy teenagers, a dangerous gateway, or a “last resort.” But the reality is more complicated. For many with MS, cannabis isn’t about chasing a high it’s about clawing back a bit of life. It’s not a cure, and it never will be. What it can do, in the right form, for the right person, is bring relief. Sometimes small, sometimes significant, always worth noticing.

What the evidence actually says

Science is messy, but let’s strip it down to what we know. Cannabis is a plant, yes, but the two compounds that matter most in MS treatment are:

THC (tetrahydrocannabinol): The part that makes people high. Psychoactive, strong, and for some people, too much.

CBD (cannabidiol): Doesn’t produce a high. Interacts differently in the body, often described as the calming counterpart to THC.

Together, in carefully balanced medical products, they can target symptoms that MS brings to the table.

Spasticity: where cannabis shines

This is the symptom where cannabis shows the clearest benefit. Studies and lived experience show that THC+CBD sprays such as Sativex (available in the UK under specialist prescription) can reduce muscle stiffness and spasms. People report less pain, easier sleep, and more control. Clinical tools that doctors use don’t always capture the full effect, but patients’ own reports matter. Relief you can feel is relief that counts.

Neuropathic pain: promising, but mixed

Neuropathic pain is one of the cruellest symptoms of MS burning, stabbing, electric shocks that don’t stop. Some trials show cannabis extracts help reduce this pain, particularly when other drugs fail. Others find only modest benefits. What’s clear is that many patients experience genuine improvement, even if not every study proves it on paper.

Sleep and quality of life: secondary gains

When stiffness and pain ease, sleep improves. Better sleep ripples out into mood, energy, and daily functioning. These knock-on benefits often don’t make it into study data, but they matter enormously in real life.

Why the stigma lingers

Say “cannabis” and too many people still picture a stoner on a sofa surrounded by crisp packets. For someone with MS, that stereotype is a slap in the face. You’re not looking to escape you’re trying to ease spasticity enough to get through the night without screaming into your pillow.

The stigma is political and cultural, not medical. Cannabis was demonised for decades, and even though attitudes are shifting, the old narratives cling on. In the UK, cannabis-based medicines are legal—but only under strict circumstances, and only through specialist doctors. Most GPs can’t or won’t prescribe. That leaves many people sourcing CBD oils or black-market products, where quality is questionable and legality is a grey cloud hanging overhead.

Risks and realities

Let’s not polish this into a miracle. Cannabis has risks. Honesty is what dismantles stigma, not over-promising.

Cognitive fog: MS already messes with memory and focus. THC can worsen that for some.

Mental health risks: High-THC strains can trigger anxiety or paranoia, especially in people already vulnerable.

Physical side effects: Dizziness, fatigue, nausea, and changes in heart rate or blood pressure.

Dependence: Rare with medical, controlled use, but not impossible.

These don’t mean cannabis is “bad.” They mean it’s a tool, and tools need skill to use safely. The difference between relief and trouble often comes down to dose, formulation, and medical oversight.

Why it matters anyway

Here’s the thing: when you live with MS, symptom relief is gold dust.

Even a 20% drop in pain, even one less night of spasms, even an extra hour of sleep it all adds up. That can mean the difference between being stuck in bed all day or having enough energy to make breakfast. Between drowning in pain and keeping your head above water.

Cannabis offers that to some. Not all, not always, but enough that it deserves respect and consideration rather than judgement and whispers.

What needs to change

Research is still catching up. Decades of stigma slowed everything down. What we need now are:

More trials: Larger, longer, better-designed studies.

Clearer guidance: What dose works? Which formulation spray, oil, vapor, capsule?

Doctor training: So patients aren’t left educating their own clinicians.

Legal access: Safe, regulated supply that doesn’t force people into the shadows.

Until then, people with MS continue to experiment quietly, often without the support they deserve.

The bottom line

Cannabis won’t cure MS. It won’t rewind the clock, repair nerves, or erase uncertainty. But it can lower the waterline. It can turn nights of relentless spasms into nights of sleep. It can dull the sharp edge of pain. It can hand back small fragments of control, and in a life where MS takes so much, those fragments matter.

So let’s talk about cannabis without shame, without stigma, and without fantasy. Let’s call it what it is: a tool. Not a miracle, not a menace, but something that, for many, makes life with MS just a little more bearable.

Quick facts: Cannabis & MS

Not a cure. Cannabis doesn’t reverse MS; it’s used for symptom relief.

Most evidence = spasticity. THC+CBD sprays (e.g., nabiximols/Sativex) show the clearest benefit for muscle stiffness and spasms.

Pain help is promising. Many people report reduced neuropathic pain; trials are mixed but patient reports matter.

Sleep & quality of life: Indirect benefits (better sleep, less waking from spasms) often improve day-to-day functioning.

Risks exist: possible cognitive slowing, anxiety/paranoia with high-THC, dizziness, cardiovascular effects, and dependence risk.

Formulation matters: spray, oil, vaping, or edibles deliver different effects — dose and ratio (THC:CBD) are key.

Legal note (UK): Medicinal cannabis is prescribable but tightly regulated; specialist prescription is usually required.

Practical tip: Start low, go slow. Use reliable sources and consult a clinician familiar with MS and cannabis.

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

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ

@goblinbloggeruk - sick@mylivinghell.co.uk

⚠️ 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.

The Many Faces of MS: Four Shades of the Same Beast

Doctors love tidy categories. It makes their conferences neater and their PowerPoints prettier. They say there are four main types of MS: CIS, RRMS, SPMS, PPMS. Add a few rarities for spice malignant, benign, radiological-only and voilà: a zoo of acronyms.

But here’s the truth: those tidy boxes don’t mean a damn thing when you’re living it. MS doesn’t give a toss about your labels. It just chews through nerves at its own pace while you try to hang on with your fingernails.

My Version of the Four Types

The Intruder Phase

The first knock at the door. A rogue signal. Something’s off, but you don’t yet know the squatters have moved in. Fear mixed with disbelief, like waiting for a verdict you already know is guilty.

The Checkerboard War

Flare, heal, flare, heal. A sick game of snakes and ladders, only the dice are loaded. You learn strategy: rest, attack, regroup. But the house always wins in the end.

The Slow Burn

Relapses fade, but the damage doesn’t. Inch by inch, it eats. You don’t need a flashy MRI to prove it you can feel the slow rot in your bones, your mind, your will. This is SPMS: the bastard’s long game.

The Quiet Conquest

For some, there’s no drama, no storms, no sudden drops. Just a slow, relentless tightening of the vice. That’s PPMS: the quiet predator. It doesn’t roar, it whispers while it strangles.

And then there are the ghost forms: so-called benign (which feels like a cruel joke) or the malignant that slams into you like a train.

What These Labels Hide

• Flux & Overlap: The lines aren’t walls. You slide, bleed, convert. Boxes aren’t boundaries, just suggestions.
• Emotional Punch: Being told “you have PPMS” is like being handed a death sentence dressed up in medical Latin.
• The System’s Lens: These labels exist for trials, drugs, and insurance companies. They don’t guide your daily grind.
• Your Identity: To outsiders, you become the acronym. But you are not “SPMS.” You are a person dragging a monster.

My Hope, My Roar

These categories might help doctors, but they don’t define us. If MS insists on giving me a label, I’ll twist it into something else. I’ll call it by my words: intruder, war, burn, conquest.

Because at the end of the day, there isn’t four MSes. There’s one beast, swapping masks. Today it’s relapse and remission, tomorrow it’s slow suffocation. Same predator, different costume.

So when the next shiny study lands new drug, new vitamin, new miracle—I check the fine print. Who are they studying? “Active MS”? “Early RRMS”? The rest of us watch from the side-lines, left holding the bill.

I roar because I’ve been there. I’ve seen the trenches. I’ve lived beyond the tidy labels. And if MS dares to name me, I’ll name it back with rage, with metaphor, with gallows humour.

Afternoon AI Thought: MS has “four types,” they say. I say it’s one predator with a wardrobe problem today a wolf, tomorrow a vulture, always the same teeth.

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

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ

⚠️ 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, my father’s funeral was last week. Cue the violins. Strange thing, really I only met him in 2000, yet somehow, in those short years, he managed to make more of a mark than most of the so-called “family” I was genetically blessed with. At the service, people spoke about his achievements with such pride that I wasn’t sure if I was supposed to cry or applaud. In true British fashion, I did neither and quietly pretended my sunglasses weren’t hiding the chaos underneath.

Our relationship didn’t exactly come with a neat bow. Coincidences dragged us together, the sort of cosmic joke I’ve been the punchline to since childhood. I can’t shake the feeling that I’m being nudged along by some unseen force God? Fate? Or just some drunk bastard with a clipboard? Either way, the path has been there, whether I like it or not.

And then there’s the juicy bit. I learned that my father didn’t want me and my sister adopted, that he wanted to marry my mother. Sweet, right? Except my mother turned out to be a block of ice wearing a dress. When I was at my weakest my multiple sclerosis ripping chunks out of me I sent her emails, desperate for a scrap of warmth. Her replies? none to busy. Apparently, my pain was an inconvenience to her daily routine of… what, exactly? Cold tea and colder emotions.

Family gatherings? Imagine being the cuckoo in the nest except all the other chicks had already decided I was the intruder. That’s been my life. When my mother died, nobody thought to tell me anything beyond the bare minimum. No funeral details, no warmth, no seat at the table. Just silence. I didn’t go, not because I didn’t care, but because by then I was already the ghost in their machine.

Now here I am. Technically one of eight, yet alone in a crowd. My father who I only recently discovered was a biker rides on in memory, while my mother remains a cold shadow I choose not to revisit.

The truth is this: family is overrated. Blood ties are just plumbing. What matters is the path you carve when no one’s got your back. Mine is messy, full of MS battles, funerals I don’t attend, and ghosts that don’t answer emails. But it’s mine, and I’ll keep walking or rolling down it.

So, here’s to the outsiders, the cuckoos, the ones who got left behind and kept going anyway. If that’s you, pour a stiff drink and join me in this dark little corner of honesty. Misery loves company, but at least we can laugh at the absurdity of it all.

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

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ

⚠️ 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.

Quantum Biopharma is pushing Lucid-21-302 (Lucid-MS) an oral therapy that doesn’t just suppress MS, but claims to repair the damage. They’ve finished a 90-day toxicity study in animals and healthy humans, and plan to ask the FDA to start a Phase 2 trial before the end of 2025.

Exciting? Sure. But also smells like a long, slow queue. Let’s break it down for us “mere humanoids” slogging through MS.

What They’re Claiming (Because Hope Matters)

Lucid-MS is non-immunomodulatory. Translation: it doesn’t mess with your immune system like current drugs do (so fewer collateral hits). Instead, it supposedly blocks peptidyl arginine deiminases (PADs) — enzymes that convert arginine in proteins to citrulline, making myelin more vulnerable. By inhibiting PADs, Lucid-MS aims to protect and repair the myelin sheath around nerves.

Animal studies show up to 50% myelin protection and repair, with some mobility improvements. Phase 1 in healthy humans showed tolerable safety so far.

Why This Could Be Huge (And Why I’m Not Popping Champagne)

The Upside:

Remyelination therapy is basically the holy grail. Most current drugs just slow the slide; repairing damage? Rare.

Oral pill = less faff than injections or pumps.

If it works, some lost functions might actually return, not just stop declining.

The Reality Check:

Phase 1 = safe in healthy folks ≠ proof it works in MS patients. Our nerves + immune system are messy; rodent results often flop in humans.

Timeline is a grind: IND filing → FDA approval → Phase 2 → years of trials before it hits the NHS.

Even if it’s safer, there will still be side effects, dosing puzzles, long-term unknowns, and likely a nasty price tag.

A UK Perspective

If Lucid-MS clears trials, NICE may take notice — repair therapies are rare and high-interest. But the NHS moves like treacle. They’ll demand compelling efficacy & safety data before adoption, and even then, cost and commissioning often throw up barriers.

Result? Some folks will get early access via trials or private means, while the rest wait. Patience becomes a cruel sport.

Future Implications

If Lucid-MS works:

Could launch a new era of myelin repair therapies.

Might shift MS care from “manage symptoms” to “fix what’s broken.”

Could encourage pharma to invest more in actual repair, benefiting everyone with MS.

Dark Sarcasm Moment

“Phase 2 by end of next year, we promise.” “Safety so far, nothing severe.” Translation: Maybe we see something in 2029 if the stars align and no one eats the budget.

What to Do While Waiting

Ask your neurologist what pipelines like Lucid-MS mean for you. Knowledge is ammo.

Watch clinical trial registries; Phase 2/3 recruitment sometimes sneaks into the UK/EU.

Push for cost transparency. If it works, I want to know if I’m paying with my sanity or bank account.

Support patient advocacy groups. Sometimes lobbying is what nudges a “nice-to-have” into real NHS access.

Conclusion

Lucid-MS: could be a repair tool, a breakthrough, or just another lab-mouse starlet. Either way, worth watching. Hope isn’t a cure, but it keeps the fight alive. And we’ll take what we can incremental progress, sarcasm, and the occasional glimmer.

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

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ

⚠️ 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 Thursday. The sun is out, probably warmer than my place, which is basically an icebox. Today’s forecast? Existential dread with a chance of mild joy.

This morning, the doctor rang me for my phone appointment. Absolute legend. Actually made me feel less like a human pincushion, which is impressive because I have severe white coat syndrome. Since moving here, local doctors are… shockingly decent. no Plumbstick, it’s almost unsettling.

Then came the highlight of my day: the “machine of death” at the chemist. It always malfunctions like it has a personal vendetta against me. But today? Today I smiled through the existential horror.

Yopi, my alpha Blueblood American Bulldog, was serene like she’d transcended this mortal coil. She hopped into the back of Rusty 1, strapped in like a responsible adult (she’s better at this than me), and off we went. The warmth of the day made me momentarily forget I’m a failing meat suit with MS. Dogs are magical that way. Stroke a dog’s chin and suddenly the chronic pain fades to background noise… until reality slaps you in the face again.

Speaking of slaps: my head feels… weird. Not foggy, just like some cosmic veil is tugging me toward a place free of pain. Somewhere better. Warmer. Definitely less human. My spiritual side is currently a maze, confusing me, mocking me, asking, “Who even are you?” Just a random meat suit with MS, apparently.

I put on The Eagles and let the memories flood in. Nostalgia is a cruel friend reminds you what you’ve lost while your limbs stage a protest.

We drove to the chemist. Thrilling stuff. All normal, boring, mundanely tragic but Yopi enjoyed it. Sometimes I wish I were a dog. Carefree. Oblivious. Immortal in joy.

Yes, that’s Thursday. Survived. Somehow.

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

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ

⚠️ 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 Wednesday. Already. Somehow I’ve managed to do more life admin than seems humanly possible for a body powered by MS and stubbornness alone. My mind is a foggy wasteland of numbness, courtesy of my chronic neurological fun-fest, but the chaos seems… slightly less apocalyptic today. Small victories.

Pain clinic consult? Surprisingly decent. I didn’t get gaslit, which feels like a miracle. Wheeled out with some scraps of positivity that I’ll hoard like toilet paper in a zombie apocalypse. MS nurse? Hoping she phones before I develop a permanent twitch from waiting. Overworked, underpaid, and heroic.

AI is my new best friend. I’m on a mission to grab my MRI scans so my digital buddy can tell me exactly what’s in my skull. No doctor euphemisms, no vague nods at “abnormalities,” just straight-up pixel honesty: “Lesion here. Lesion there. Weird patch in your brainstem. That’s all.” Finally, clarity for a human with a brain that sometimes refuses to translate itself into English. White coats can go choke on their paperwork.

Yopi, the four-legged chaos incubator, is settling into our life of slow-motion absurdity. She’s making my world stranger in ways I didn’t think were possible. Only snag? My mobility. Can’t take the walks, but we’ll train her to glide along with the powerchair. Life’s full of compromises, mostly involving gas masks for me and treats for her.

Medical marijuana and THC/CBD oil are holding the line. No magic bullets for nerve pain, tinnitus, or the daily brain ache, but it helps, and I’ll take it. Every little sanity-saving thing counts when you’re a human pinball in an MS-shaped arcade.

Meanwhile, I sit, inhaling the occasional waft of bulldog farts, contemplating life, death, and whether AI will someday take over all consulting roles for humans with chronic illness. It probably will, but at least it won’t judge me for smelling it all and laughing anyway.

MS life: chaotic, smelly, occasionally enlightening, and fully documented with AI commentary for the ages.

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

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ

⚠️ 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.

When Your Brain Betrays You Before Your Legs Do

Multiple sclerosis has a knack for picking the cruellest, most intimate places to steal from you. People expect the visible the limp, the cane, the visible fatigue. Those feel negotiable: you buy different shoes, you learn new routes, you ask someone to carry the groceries. The invisible theft is nastier, because it takes things you don’t know how to replace: the steady line of your thoughts, the little plug that supplies the right word, the sense that you are the same person you were yesterday.

Let’s be blunt: cognitive changes in MS are terrifying. They are not a failure of will. They are not melodrama. They are neurologic reality. And they hurt in a way that doesn’t leave bruises but hollows you out.

What it feels like - Thought drift: mid-sentence, your mind steps out for a cigarette and forgets to come back. You re-read the same paragraph three times and still miss the point. - Word loss: it’s not just “on the tip of my tongue.” It’s watching language implode. Proper names vanish; everyday words hide like shy pets. - Slowed processing: decisions that used to be automatic now come wrapped in molasses. You have to consciously unspool what used to be seamless. - Short-term memory gaps: you can hold a story for decades but forget why you walked into the kitchen. - Emotional ripple effects: shame, anger, grief — often louder than the cognitive symptoms themselves.

Why this terrifies us Because our identity lives in memory and in the continuity of thought. When that continuity fractures, you don’t just lose a function — you lose the scaffolding that holds who you are. For everyone who’s felt this: the panic, the grief, the small, private funerals for who you used to be — it’s valid.

How to live with it (practical, not patronizing) These are not miracles. They’re tools, routines, and tiny rebellions that let you keep building a functioning life when the wiring is noisy.

• Externalize memory

  • Notes everywhere: short, clear labels. Notebooks, sticky notes, digital note apps — pick one and stick to it.
  • Use alarms and timers for appointments, meds, and transitions.
  • Photo prompts: snap pics of things you want to remember (where you parked, what you brought to an event).

• Structure decisions

  • Reduce friction: pre-plan meals, outfits, and errands.
  • Decision rules: limit choices (two outfits only; one grocery list template).
  • Routines become Armor: mornings and evenings on autopilot save cognitive energy.

• Chunk tasks

  • Break things into 10–20 minute blocks.
  • Use checklists with visible progress markers.
  • Allow micro-breaks — short rests reset attention.

• Communicate with intent

  • Tell trusted people what’s happening in simple terms: concrete examples and specific asks help.
  • Use one-liners when you need help: “I need extra time,” “Please remind me in 10 minutes.”

• Use tools that fit you

  • Voice memos for ideas that evaporate.
  • Text-to-speech and speech-to-text when reading or writing is hard.
  • Calendar-sharing with a partner or friend.

• Train, gently

  • Cognitive rehab and occupational therapy can help re-train strategies; they’re not magic but they work for some people.
  • Brain games? Use them as gentle practice, not cures.

• Prioritize sleep and manage energy

  • Fatigue amplifies cognitive issues. Rest strategically.
  • Learn your “best hours” and schedule demanding tasks then.

• Manage the emotional impact

  • Let yourself grieve. Anger and panic are normal reactions, not failures.
  • Find a place to be raw: a journal, a private blog, a therapist, or a safe online community.
  • Celebrate tiny wins. Remember that progress isn’t always linear.

When you need to make hard choices Some losses demand adjustments: job changes, shifting responsibilities, planning for legal and financial contingencies. Those conversations are brutal but practical. Put important documents in order, name a trusted person for support, and consider professional advice early rather than waiting until a crisis.

Words to live by when it’s darkest - You are more than a symptom set. Cognitive changes do not erase your core worth. - Small systems beat big intentions. A single alarm is more useful than a perfect plan you can’t remember. - Humor helps when it can — and if it doesn’t, that’s fine. Crying is a strategy sometimes.

You are not alone This is not a vanity project or an isolated tragedy. Many of us know that fog, and we learn to navigate it together — trading tips, commiserations, and the occasional dark joke. If writing back at MS is your rebellion, keep writing. If whispering the small facts into your phone keeps your day tethered, do that. If you need to scream into a pillow, scream.

MS can take things. It will not get your entire story unless you let it. Keep the notebooks, the alarms, the friends who check in, and the words you refuse to lose. Keep writing, because every sentence you manage is a victory, and every honest post a beacon for someone else lost in the fog. Not today, MS. Not today.

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

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ