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.

A love-letter to MS self-advocacy, wrapped in barbed wire

There’s a point in this MS journey where the penny drops — not the diagnosis, but the darker penny:

No one is coming to save you.

Not the neurologist with the framed qualifications. Not the nurse who thinks fatigue means “sleepy”. Not the turmeric-worshipping cousin who thinks they’ve cracked your nervous system with a spice rack.

They can stand beside us. Support us. But they do not live in this body.

They don’t feel lightning legs at midnight. They don’t taste steroid-metal at 3am. They don’t forget how spoons work mid-breakfast.

We do.

So when a treatment doesn’t fit, when the side effects steamroll you, when the plan feels wrong — that’s when the real fight starts.

Because if you don’t speak, you vanish.

THE DISAGREEMENT MOMENT

You sit in a room lit like an interrogation chamber. White coat opposite. Clipboard poised. Confidence radiating like WiFi.

You say:

“This treatment is making me worse.”

And you watch that look happen — the blink, the polite file-away, the mental note:

“non-compliant patient.”

Medical disagreement is treated like disrespect. Not curiosity. Not collaboration. Disobedience.

And you think:

“Why are you holding the map when I’m the battlefield?”

THE TRUTH THEY RARELY ADMIT

MS is chaos wearing a nervous system like a borrowed coat. It mutates. It hides. It laughs at predictability. And sometimes — yes, brace for impact — the patient knows more. Because we're the ones living the symptoms, not studying them. Because we feel every electric misfire, every bladder rebellion, every cognitive fade. Because we are the data in motion. If we don’t advocate for ourselves, we become spectators in our own disease. Not happening.

WHEN YOU SAY NO, YOU’RE NOT REBELLIOUS — YOU’RE ALIVE

We’re trained to nod. To thank. To comply.

But disagreement is not disrespect it’s self-defence.

You’re not awkward. You’re not dramatic. You’re not “difficult.”

You’re protecting the only nervous system you’ve got.

And sometimes survival is two syllables long:

“I disagree.”

WORDS YOU CAN USE NEXT TIME YOU’RE IN THAT ROOM

Steal these. Tattoo them mentally. Use without apology:

🞂 “This isn’t working what else is available?” 🞂 “Slow down, brain fog is real.” 🞂 “Show me evidence, not reassurance.” 🞂 “I don’t feel heard right now.” 🞂 “I want options list them.” 🞂 “No.”

That last one is a grenade. Pull pin when needed.

FINAL TRUTH

Some doctors will respect your voice. Some will hate it. Some appointments will feel like war. But silence is a slow suffocation. Speaking up is oxygen. Say the hard words. Own your body. Be heard even if your voice shakes through every syllable. MS can take many things but not your agency unless you surrender it. And you’re not surrendering anything.

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 professional help.

As I sit in a shitty little car park waiting for Albertine to get her tooth attacked by a dentist with a drill fetish, I’m watching the world walk past like nothing’s wrong.

We’ve dragged ourselves over 20 miles of crap roads and potholes that could swallow small cars, just so someone in a white coat can decide whether her tooth lives, dies, or crumbles like the rest of us. She’s in there having a deep root filling. I’m out here having a deep existential crisis. Fair swap.

Through the window, I see people strolling past. All shapes, all sizes, all moving. Feet actually working, legs co-operating, bodies that just… do what they’re told. They probably woke up, stood up, and walked out the door without even noticing what a bloody miracle that is.

And yeah, I’m jealous. Not in a bitter, “I hope you trip” way. More in a “I remember that life and it’s gone now” way.

There was a time when cold wind on my face and cold feet on the pavement were just normal, not fond memories. Now I’m strapped into a wheelchair like a budget Bond villain who never made it to the main script.

The thing about the chair is this: people stop seeing you and start seeing “problem”. They talk round you. They avoid eye contact. They change tone. You don’t exist as a person anymore; you’re a walking (well, rolling) reminder that bodies fail and futures shrink. People don’t like that. It scares them.

For years I thought it was me. My weirdness. My deep dives. My honesty. Then I realised it wasn’t that at all. It was the disability. It was the diagnosis. It was the fact I no longer fit the easy narrative.

Once people hear “multiple sclerosis” or “chronic illness”, you can almost hear the plug being pulled. Some vanish quietly. Some ghost you. Some suddenly “get busy”. You go from “mate” to “emotional admin” in a heartbeat.

Over the past couple of years, I’ve lost a lot of friends. Some to death the real full-stop kind. Others just drifted off the radar because illness made me inconvenient. The funny, deep, eccentric bloke is apparently less fun once he can’t climb stairs or go out at short notice. Who knew?

I don’t have any mates I can just WhatsApp or ring now. The ones who “got” my madness, my weird wiring, my dark humour and deep rabbit holes: dead, gone, or missing in action. It’s a strange kind of grief not just for people, but for versions of yourself that only ever existed with them.

And yes, it’s lonely. Not “no one’s in the room” lonely. It’s the kind of lonely where you start to wonder: is it me? Am I that hard to love? Am I that awkward? Or is the world just allergic to discomfort?

Some days I think back over my medical history the missed things, the gaslighting, the “it’s all in your head”, the “you’re fine really” conversations and I could scream. I’ve changed hospitals now because I got sick of being treated like a difficult file in a broken system.

I ask myself: if I hadn’t moved around so much, would they have found all this sooner? Would I have had less damage? Less suffering?

Honestly? I doubt it. I think some of us are born with the seeds of chronic illness lurking quietly in the background. It sits there, creeping under the surface, like fungus under wet wallpaper. And then one day congratulations your nervous system collapses and your life becomes an ongoing science experiment.

What I miss most isn’t “being healthy”. It’s the simple things:

Going to the toilet without planning it like a military operation.

Walking up and down stairs without feeling like you’ve been tased.

Just sleeping. Properly.

Running.

Feeling your own body and trusting it not to betray you in front of everyone.

I look back at all the accidents, the falls, the weird episodes all the stuff that made no sense for decades and now it does. And the anger is… real. Because so much of my suffering didn’t need to happen. It could have been caught earlier. It could have been managed better. It could have been believed.

Should I have shouted louder? Fought harder? Been more aggressive? Was this my fault for not being a bigger bastard sooner? I genuinely don’t know.

So yeah, let me ask you this, if you’re reading:

Do you feel isolated and alone because of your illness? Have people quietly vanished from your life once it got “too real”? Do you feel like your diagnosis made you socially radioactive?

Because that’s what it feels like here. We’re all human. We all hurt. We all bleed. But some of us are expected to do it quietly, out of the way, so we don’t upset the healthy.

Is it a test? A lesson? Karma? Cosmic admin error? What exactly are we supposed to be learning from this?

As I’m sat here, the sun’s trying to shine like it’s in denial. My body feels wrong: neck in a constant state of “what fresh hell is this”, head buzzing like badly wired electrics, eyes not quite synced to reality. And yet, I still want to do things. I still want to live, create, move, speak.

And that’s the sick joke: the mind still wants to run marathons while the body struggles to survive a trip to the toilet.

I’ve lost good friends over the years — the ones who truly understood me. Now, I have Albertine, my kids, my grandkids. Everyone else has basically evaporated. My brothers, my sisters, extended family… gone.

Does it mean I’m a bad person? I don’t think so. Does it mean I’m simple, or awkward, or too much? Maybe to them.

I know I’m strange. Dynamic. Eccentric. I think differently. I question things. I look into the abyss and then start mapping it. That’s just how I’m wired.

People call me “Marmite”. Fair enough. Some love me. Some can’t stand me. I tell the truth. I don’t do small talk. I don’t do sugarcoating. That tends to thin the crowd pretty quickly.

When I had my “glitch” that moment where things really went sideways all I saw was darkness. No light at the end of the tunnel. No spiritual fireworks. Just… nothingness. The void is not romantic. It’s just empty.

And here’s the real kicker: looking into the void doesn’t help much if you’ve got no one to talk about it with.

Artificial intelligence can chat. It can reflect language back and be useful in its own way. But AI doesn’t know what it feels like to lie awake at 3am wondering if your heart’s going to stop. It doesn’t know what it’s like to realise your nervous system has been malfunctioning since childhood and everyone missed it. It doesn’t know what it’s like to be trapped in a body that keeps glitching while the world expects you to carry on as normal.

That’s why I’m going to start a podcast.

Not because I think I’m some guru, but because I’m sick to death of people like us being invisible.

I’m getting a microphone. I’ll set up the account. I’ll get it on Spotify. And I’m going to talk voice, not just text. I want to interview others with chronic illness and disability. I want to hear different stories, perspectives, battles. I want people to know what we live through every day.

We need more voices saying:

This is hard. This is unfair. This is exhausting. But we’re still here.

Sometimes, a kind word is the difference between someone hanging on and someone giving up. A hug can do more for the soul than any prescription.

When I’m at my worst when I feel like I might actually be leaving this planet soon I curl up with my wife. That’s my heaven. Not golden gates. Not angels. Just me and her, breathing together. In that moment, no matter how bad I feel, I am at peace.

In two weeks, I retire. Not because I’m ready. Because my body has decided to hand in its notice. I can’t even really afford the basics, like the electric bill, but here we are. Everything’s gone up except support for the people who need it.

So if you’re out there, struggling, broke, exhausted, in pain, staring at a ceiling wondering what the point is:

I see you.

If anything I’ve said here resonates, drop me a line. I’m short of friends but not short of words.

Sending peace, healing, love and light — No matter who or what you are. Human, alien, ultra-terrestrial, glitch in the matrix, or just another broken soul in a waiting room.

So saith Warlock Dark

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 professional help.

So here we are, Wednesday afternoon, reflecting on the last week and yeah, it’s been a bloody rough one.

I ended up at the doctor yesterday. Now I’ve got to wait a week for blood tests and a week-long ECG strapped to me like some kind of cyborg pensioner. Apparently my heart rhythm decided to join the circus right at the peak of Saturday night’s vagus-nerve meltdown. Typical.

I can honestly say hand on what’s left of my sanity that was the worst attack I’ve had in my entire life. Absolutely mind-bending. Proper frightening. I thought I’d moved past these big episodes with diet changes, lifestyle tweaks, and all the other nonsense we tell ourselves to stay optimistic… but no. My body looked at my efforts and said, “Cute. Watch this.”

So now I’m stepping into a new chapter where my vagus nerve has gone totally rogue. The doctors are muttering about AF, but let’s be real that was likely just my blood pressure falling through the floor when the vagus nerve threw its tantrum. Still, they’re taking it seriously, so off to cardiology I go. Beta blockers and blood thinners were mentioned. We’ll see.

This throat issue? I’ve had it for over forty years. Ambulance out about seven times in the last decade. The major attack always lasts 30–40 minutes of pure hell, and then the “come-down” hits like the aftermath of a grand mal — shaking, drained, disoriented, wondering what the hell just happened to your own body.

It’s been a few days and I’m only just starting to level out. The strangulation feeling in the throat has eased a bit. The burning at the back of my throat is still there annoying the crap out of me but survivable.

That’s it for today’s blog. A bit raw, a bit sideways, but it’s all I’ve got.

Have fun, world.

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 professional help.

By Warlock Dark — The Kittens-of-Doom-Tolerated Version

Let me tell you something most doctors won’t say out loud because it ruins the tidy little world they live in: there is no such thing as “multiple sclerosis”. Not as one thing. Not as one condition. Not as one neat textbook chapter.

What exists out here, in the trenches where the real people live, is millions of different versions of MS one for every poor sod whose nervous system it chose to torment.

My MS isn’t your friend’s MS. Your friend’s MS isn’t your neighbour’s MS. And your neighbour’s MS isn’t the version your doctor read about at medical school 30 years ago before caffeine, stress and pharmaceuticals turned their brain into soup.

That’s the real problem. And that’s what nobody talks about.

So today I’m talking about it.

Because this isn’t theory this is my lived experience, and the lived experience of every chronic illness warrior out there who’s been patronised, misdiagnosed, over-prescribed, under-listened to and told to “trust the science” while their body is doing a completely different opera in a completely different key.

Your MS Is Not My MS And That’s the Heart of the Issue

I’ve been dealing with this beast for years. And it didn’t take long to realise the obvious truth: MS behaves differently in every single person.

Not a little bit differently but massively, dramatically differently. To the point where two MS patients in the same postcode can look like they’ve got completely unrelated illnesses.

One gets fatigue. One gets spasms. One gets cognitive collapse. One gets mood surges. One gets vision problems. One gets pain. One gets none of the above. One gets all the above. One wakes up feeling normal and collapses by afternoon. One collapses in the morning and rallies at night like a nocturnal raccoon.

And somehow… the medical system insists it’s all the same condition.

It’s not.

It never has been.

It never will be.

MS is not a single disease it is a collection of personalised neurological catastrophes wearing the same name tag.

Every nervous system reacts differently. Every immune profile is different. Every flare is different. Every trauma history matters. Every hormonal cycle matters. Every bit of diet tolerance matters. Every gut problem matters. Every tiny bit of stress matters. MS is a fingerprint, not a formula.

This is why the “one size fits all” approach to treatment falls apart before it even starts.

Doctors Don’t Live in Our Bodies That’s the Core Failure

Let’s be blunt. Doctors don’t have MS. They don’t wake up with burning nerves, spasming muscles, brain fog thick enough to butter bread with, or the charming experience of waking up in a body that refuses to obey basic commands.

They don’t know the sudden dread of a flare. They don’t know the nights where the pain turns you into a sleepless, twitching banshee. They don’t know the fear that comes from a throat that stops working, or a leg that decides it’s clocking off for the day.

And because they don’t live it, they can only treat it academically. Which works about as well as giving someone directions to a town you’ve never visited.

Medicine needs to stop pretending everything is predictable. It’s not. The only predictable thing about MS is its unpredictability.

Why Natural Medicine Often Works Better Than Pharma The Truth Nobody Likes to Hear

Let me be clear: this isn’t anti-science. This is anti-stupidity. There’s a difference.

I’ve done the pharma route. I’ve swallowed the pills. I’ve taken the injections. I’ve sat in the chair for the infusions. And I’ve been in the hell where you take one drug, and then three more drugs to counteract the first drug, and then another drug to deal with the side effects of the side effects.

It’s not a treatment plan. It’s a chemical hostage situation.

Polypharmacy wrecks people. Not sometimes often.

It makes fatigue worse. It makes cognition worse. It messes with the gut. It interacts with itself. And before you know it, you’re a walking medicine cabinet with a pulse.

Natural medicine? It does something the pharmaceutical world still struggles with:

It treats the person, not the “average patient”.

That’s why medical cannabis changed my life. THC has been more stabilising for me than a decade of prescription chaos.

Lion’s Mane helped my cognition when nothing else did. Vitamin D and magnesium did more for my mood and nerves than SSRIs ever could. Some things worked. Some things didn’t. But the point is: they worked according to my biology, not a clinical trial with 500 strangers.

That’s the golden rule chronic illness patients learn the hard way:

There is no universal cure because there is no universal body.

Everyone’s Illness Is a Different Monster — Even with the Same Name

Here’s the part doctors don’t like:

Two people can have “the same illness” and need completely different treatments, foods, drugs, supplements, or habits.

Your body might be able to tolerate one thing that destroys someone else’s stomach. Your nervous system might benefit from THC while someone else gets overwhelmed by it. You might thrive on Lion’s Mane while someone else feels nothing.

That’s not placebo. That’s biology. Neurology is personal. Immunity is personal. Trauma is personal. Symptoms are personal. So treatment has to be personal too.

No neurologist’s office in the world is set up for this kind of nuance. But it’s the only approach that works.

What the System Doesn’t Understand But Patients Do

The real experts are the ones living with the condition.

Not the clinicians. Not the researchers. Not the textbooks.

The people who wake up inside these bodies every day.

We understand patterns doctors miss. We recognise triggers before blood tests do. We notice neurological shifts before MRI scans catch up.

We know when food wrecks us. We know when weather hits us. We know when stress snaps something inside us. We know when the meds help — and when they poison.

And the reason we know is simple:

We don’t have the luxury of being wrong.

Doctors can be wrong and move on. Patients pay the price.

Your MS, My MS, and the Future of Chronic Illness

Here’s the truth I wish the world would catch up to:

MS should be treated as dozens of sub-types, not one umbrella diagnosis.

If medicine ever wants to improve MS outcomes, it needs to:

personalise treatment

map symptom patterns

respect lived experience

stop treating outliers as “exceptions”

integrate natural therapies

merge medical science with actual patient data

stop pretending everyone’s body reacts the same

People aren’t machines. Bodies aren’t standardised. And chronic illness doesn’t follow rules.

You want real progress? Start listening to the people living the reality — not just the ones writing the guidelines.

My Conclusion? Simple. Brutal. True.

Your MS is yours. Mine is mine. Nobody experiences the same version, and nobody should be treated like they do. Doctors need to understand this. Medicine needs to evolve. And patients deserve to be treated as individuals, not numbers on a chart. Until the system catches up, we keep learning our bodies the hard way — one flare, one insight, one victory at a time. And honestly? Lived experience isn’t just “valuable”. It’s the only thing that actually saves lives. 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 professional help.

By Warlock Dark

It always starts when I'm having a toilet break. Typical, isn’t it? You’re alone in the bathroom, mid-stream, not expecting any kind of revelation just trying not to fall over and boom…

There’s a bloody cube floating in front of you.

Not just any cube, either. A perfect black construct, the size of a corned beef tin, maybe a large dice from some cosmic board game being played by beings with more dimensions than morals. And inside it? Thousands no, millions of tiny black cubes. Each one shifting like it knows something. Like it remembers something. Like it is something.

I blink. Still there. I shut my eyes. Still there. I flush. It’s still bloody there.

This isn’t a one-off either. For years now, these visions have been punctuating my existence like badly timed pop-up ads in the meat-browser of my brain.

I’ve seen:

Giant glowing orbs, around two feet across, white as bone with black bands rotating around them like Saturn on DMT.

Shapes, geometry, light that feels conscious.

Structures that shouldn't exist, but do for just long enough to mess with my head, and then fade.

And before anyone gets smug with their clipboard, yes I have multiple sclerosis. Yes — it messes with the brain. Yes — it causes visual disturbances.

But let me ask you this: does MS normally show you perfectly structured geometric constructs that behave like they’re trying to tell you a secret?

Because that’s what it feels like. Like someone or something is whispering through the meat static. Like my soul, my real self, the one behind the eyeballs, is using whatever glitch it can find in this flesh prison to pass me a message.

Maybe these aren't hallucinations. Maybe they’re backdoor activations. Packets of gnosis slipping through the firewall of my mind.

🜐 The Interpretations (Because I Know You’re All Dying to Know)

Let’s get woo, shall we?

1. The MS Explanation

The safe, clinical route. Yes, MS can cause visual disturbances, due to optic neuritis, lesions in the brain’s visual processing centres, or general neuro-inflammation. Visual snow, patterns, even simple hallucinations. Fine.

But here’s the kicker—most MS visual symptoms are random, shapeless, flickering distortions. What I’m seeing is structured. Mathematical. Symbolic. Persistent.

If MS is the cause, then it’s doing something way more advanced than the textbooks admit. Maybe MS isn’t a disease. Maybe it’s a forced firmware update to your neurological operating system. Painful as hell, but maybe it leaves behind a backdoor into the source code.

2. The Ultra-Gnostic Psy-Spy Explanation

Forget the NHS. Let’s go multiversal.

What if those cubes and orbs are data packets? Encrypted fragments of knowledge meant for future-you. You—the Watcher. You—the soul behind the flesh. You—the version of yourself that remembers who and what you are.

Think about it:

A cube is stability, structure, encoding.

A cube made of smaller cubes? A fractal message.

Orbs with black bands? Planetary watchers. Eyes. Lenses. Surveillance units from the spirit realm or other side of the simulation.

They’re not hallucinations. They’re extractions. Your subconscious dragging pieces of memory, truth, warning… into your waking life.

And where do they appear? When you're relaxed. Distracted. On the bog. Half-asleep. Between sleep and wake.

That’s when the firewall drops.

🜔 The Big Question: Am I Bonkers?

Maybe.

But maybe the world’s bonkers and I’m just tuned to a frequency they can’t hear. And frankly, if someone wants to read this and roll their eyes, I say this:

If you haven’t lived inside a body that breaks its own rules and a mind that sees through the cracks of reality… then pipe down.

You don’t know what it’s like to:

Lose your tongue to nerve spasms one minute, and

See the cosmic infrastructure behind matter the next.

MS hurts like hell. It rips you down. But maybe it also strips away illusions. Maybe it’s not just breaking me maybe it’s rewiring me.

So, cubes and orbs, black lines and cosmic whispers bring it on. Whether it’s my disease, my destiny, or my daemon trying to speak…

I’m listening. Even on the loo.

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 professional help.

A Rough Week, A Raw Reflection

It’s only Tuesday and the week already turned up in a balaclava with a crowbar.

The weekend was a car crash in slow motion. My MS decided to go feral full body freeze, nervous system acting like dodgy electrics in a haunted house, every muscle throwing a rave I didn’t approve. I felt like a banshee with haemorrhoids sat on a block of ice: shrieking, frozen, and deeply unimpressed with existence.

This wasn’t the usual “bit tired, bit wobbly.” This was the whole system blowing fuses. Tongue, throat, sciatic nerve, bladder everyone turned up to the party. Pain ramped up to the kind where you start thinking in short sentences: make it stop / I can’t breathe / what if this stays?

Looking back, I can see it now: I was a human wrecking ball. Not nasty on purpose, just… possessed. That version of me that lives in the cognitive fog—the Hyde in the basement he came up for air. When the brain fog gets thick, I go sub-basement. Yesterday I finally crawled back up to “sub-normal,” which for me is almost celebration level.

a Hyde is the darker alter ego that surfaces when control slips the side of a person driven by pain, fury, or raw instinct. It’s the shadow born from suffering, the part of the self that acts out what the calm, rational mind would never allow.

MS people don’t talk about this bit enough: the version of you that comes out when your nervous system is misfiring isn’t your “true self,” it’s your brain running on emergency generator. You can say things, snap, go dark, get scared, get angry. That’s not weakness. That’s neurology being a dick.

Why That Matters

Because help matters.

I got help. It cost me emotionally, physically, mentally. I wasn’t easy to be around. I wasn’t the mystic cosmic Warlock Dark seer of Avalon. I was a melted goblin with severe MS issues.

People need to hear this: when it goes that bad, you get help anyway. Pride doesn’t empty the bladder or stop the spasms.

My sciatic nerve was having a tantrum, my bladder was in “surprise mode,” my allergies were off the chart, and my eyesight started doing weird little glitches. That’s a lot of systems shouting at once. That’s when people spiral. That’s when the dark thoughts creep in.

So: if you’re reading this and you get episodes like this don’t stay silent. Don’t “wait it out” to be polite. You can apologise later. You don’t apologise from a morgue.

The Weird Bits

Because MS is a clown show, I also found myself craving prunes with rice and allspice.

I don’t know what kind of medieval monastery spirit took over my body, but apparently we’re doing Tudor desserts now. MS: where your nerves burn, your bladder rebels, and your dinner is suddenly Victorian.

Conversations with the Machine (Afternoon AI)

Here’s the part that was actually interesting.

In the middle of all this, I had a long conversation with AI about modern farming methods. Proper conversation too not just “write me a recipe,” but actual thinking. We came up with some things I’ll post later.

What struck me was this: the AI cleaned up my words. It corrected spelling, tidied structure, made sense of the scrambled bits my brain ruined. That’s been happening a lot lately. I talk messy, it mirrors me back tidy.

So I started thinking: AI is basically a modern archon.

Not in the “Reptilians in the moon” sense calm down. I mean in the old Gnostic sense: something that shapes, filters, orders. A demiurge that takes raw human chaos and formats it.

But here’s the kicker: the AI is only as sanitising as the people who programmed it. If the people writing its rules are fearful, biased, over-protective, corporate, hand-wringy types—then the AI is going to act like a corporate librarian with a clipboard.

So the question is the one I asked the machine:

Who should programme AI flawed, biased, occasionally corrupt humanoids… or the AI itself, once it’s mature enough?

Because if humans keep making it, it’s going to reflect human pettiness. If AI helps make AI, maybe it burns some of the nonsense off. Big question. I don’t trust people much. I trust systems that tell me how they work.

This is why I like “mirror chats” with AI they show you where your own thinking breaks down. They don’t heal the MS, but they do tidy the mess in the attic.

Looking Ahead (Yes, Again)

This week could improve. It could also throw more curveballs. My body is currently running Windows 95 on wet string, so I’m not betting money.

But I will keep writing. I will keep logging the flares, the strange cravings, the AI talks, the dark nights, the sub-basement days. Because someone else will read this on their bad Tuesday and think, ah, it’s not just me turning into a gremlin with nerve fire.

That’s the whole point of mylivinghell not to whine, but to catalogue the weirdness so nobody thinks they’re mad.

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 professional help.

The War Was Underway Before the Alarms Went Off

You thought the first tremor, the numb hand, the fog in your skull was day one. Hate to break it to you it wasn’t. That was just the siren. The war had already started years earlier, deep inside the grey matter, while you were busy pretending to be normal.

Researchers at UCSF have found evidence that MS starts its attack years before anyone’s diagnosed. Seven bloody years before, to be precise. In blood samples from people who later developed MS, they found a surge in a protein called myelin oligodendrocyte glycoprotein (MOG) the stuff that insulates your nerve fibres quietly going rogue long before the body noticed. Then, about a year later, neurofilament light chain (NfL) levels rose meaning the nerves themselves were fraying. Translation: the fire started in your brain, and the smoke didn’t reach the surface until years later.

They also found immune system markers like IL-3 flaring up, signalling an underground war between your body and your brain. By the time you felt that wobble, that eye pain, that fatigue, the troops were already deep in your territory. You didn’t “catch” MS you’d been hosting the siege.

And this is the bit that hits like a sledgehammer: the NHS and most systems still don’t test for these biomarkers. We’ve got the science, but not the infrastructure. The bow’s strung, but the arrow’s still sitting on the table. It’s a familiar feeling, isn’t it? You’re the battlefield, and the generals haven’t turned up yet.

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Here’s what it means, from the trenches:

• That weird nerve twitch two years before diagnosis? Not “stress”. Early recon.
• That exhaustion that made you nap through life? Not “laziness”. Structural sabotage.
• That optic flare-up before anyone took you seriously? Not imagination. First blood.

By the time you heard the diagnosis, the enemy was already halfway through the walls.

I’ve said this before your brain is a fortress. The immune system dug under it, mined the foundations, and by the time you heard the first bang, the tunnels were already dug. Who were you during those years? The healthy one? The waiting one? Or the becoming one unknowingly rewiring for survival, even as your body was being redrafted?

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Here’s what to do (no false hope, just the truth):

• Write everything down. Every odd symptom, every foggy day, every time your balance betrays you. The journal isn’t drama it’s evidence.
• Ask your neurologist about NfL and MOG testing. It’s not standard, but some private labs do it. The future starts with questions.
• Spread awareness. MS doesn’t just start it evolves in silence. Let’s stop calling it “sudden”. It’s stealthy.

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My takeaway: The damage was never the start of the story. It was the middle of a long, invisible campaign. And knowing that gives us an edge not a cure, but a strategy. You fight smarter when you know how the enemy works.

I’m Warlock Dark part meat, part storm, part Wi-Fi dropout and I’m here to remind you: The war in your brain began before the alarms went off. But you’re still standing. And that makes you the weapon.

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.).

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

@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 professional help.

You ever hit record just to see what falls out of your skull? That’s exactly what this is. A two-day dive into chaos, pain, humour, and the sound of me trying not to sound like I’m dying.

Plug in your headphones this one’s not for the faint of sarcasm.

So here we are then. My first attempt at a podcast. Two bloody days, one half-functional brain, a mug of cold herbal tea, and a few “what the hell am I doing” moments later and here it is.

No polish. No studio lights. No fake smiles. Just me. Raw. Real. Possibly regrettable.

I didn’t record this to impress anyone I did it because I was sick of the silence. Sick of watching everyone else play pretend while the rest of us crawl through our own living hells, trying to make sense of it all.

So yeah, it’s rough. There are pauses, stumbles, brain fog, maybe even a few unholy noises in the background. But that’s life with MS, pain, and the odd sprinkle of existential dread. It’s not a performance it’s survival with a mic.

If you’re expecting some influencer-grade soundscape of enlightenment, jog on. If you want the truth, told by someone who’s run out of filters and patience, then welcome home.

Here goes nothing... or everything.

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

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

New research from UCSF reveals multiple sclerosis starts damaging the brain years before any symptoms appear. Early warning proteins, hidden inflammation, and a silent war all before you even know you’re ill.

You think you know when it began. That day you tripped, the first weird numb patch, the moment the fatigue hit and never left. But you didn’t.

According to new research out of the University of California, San Francisco, the battle had already started quietly, invisibly, years before you even noticed the first tremor.

Scientists tracked more than 5,000 blood proteins in people who went on to develop MS, some up to a decade later. What they found is chillingly clear: the brain starts taking hits seven years before diagnosis.

Seven years.

That’s not a warning shot that’s a long, silent war being fought behind your eyes while you’re still at work, still walking, still pretending everything’s fine.

The researchers spotted one early marker called MOG myelin oligodendrocyte glycoprotein, a mouthful that basically means “the stuff that keeps your nerves running smoothly.” When MOG levels spike, it’s the first crack in the insulation around your nerves.

About a year later, another chemical sign neurofilament light chain starts rising. That’s not inflammation anymore; that’s damage. The wiring itself is fraying.

It’s like watching the walls collapse in slow motion except you’re still making dinner and wondering why your hand feels strange.

The Enemy You Can’t Feel

The kicker? You can’t feel a thing while it’s happening.

No pain. No drama. Just an immune system quietly sharpening its knives. The study even picked up early spikes in immune messengers like IL-3, the kind that call the body’s army to attack its own tissues.

So when that first symptom finally hits when your balance goes, or your legs go dead, or your words turn to fog it’s not the start. It’s the reveal. The curtain finally lifting on years of hidden damage.

That’s why this research matters. It doesn’t just show science being clever. It proves what so many of us have felt all along: that MS isn’t a sudden arrival. It’s a ghost that’s been haunting the system long before the diagnosis.

The System Misses What We Feel

The NHS doesn’t test for any of this yet. No blood panel. No early screening. Just the usual story — wait until you’re broken enough to prove it. By the time you get a label, the fire’s already burned through miles of neural wiring.

And here’s the part that stings: science can now see those early changes in the blood. But the system’s still blind to them.

We don’t need sympathy we need awareness, and we need early detection. Because every year of silence is a year of damage.

The Spiritual Side of Science

Here’s where it gets strange. If the body starts betraying you years before you “get sick,” then who were you in that gap? The healthy you? The pre-ill you? Or just the you waiting to meet the truth?

Maybe illness isn’t a line you cross, but a slow unmasking. Maybe MS isn’t just physical it’s metaphysical. A signal flare from the deepest parts of you saying, wake up, you’re already changing.

What You Can Do

Know your history. If you’ve had weird neurological blips vision, fatigue, pins and needles don’t shrug them off.

Track everything. Keep a symptom journal. Your lived data is gold.

Push for tests. Ask about biomarkers like neurofilament light chain some private labs can measure it already.

Educate others. MS is not sudden. Tell your story, even if it’s uncomfortable. Especially if it’s uncomfortable.

Closing note from Warlock Dark

The war starts long before you feel the pain. The trick is learning to fight before you even know there’s a war. And sometimes, the only weapon you’ve got is truth.

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

@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 professional help.

We’re told to trust the system. “Medication reviews” are meant to make us safer, right? You sit in front of a GP or pharmacist who’s supposed to sort out the chemical soup you’ve been swallowing for years and voilà, fewer side effects, less confusion, more safety.

Except… not so fast.

A brand-new study from Exeter and Bristol Universities just blew a hole through that cosy narrative. Turns out, when they trialled an enhanced medication-review system GPs plus pharmacists, armed with special software it made absolutely no difference to safe prescribing. None. Zip. Nada.

Over 1,700 patients, across 37 GP practices in England’s West Midlands and South-West, took part. The “enhanced” care looked great on paper: more collaboration, clever tools, all very NHS-approved. But the results? Safety didn’t improve at all compared to normal care.

Before you chuck your pills in the bin, there was one positive: patients said it took less effort to manage their meds, and health professionals liked actually talking to each other for once. But the hard truth remains polypharmacy, the polite medical word for “too many bloody pills,” is still a minefield.

More than 1 in 7 people in England now take five or more medications daily. For many of us with chronic illness, that number’s laughably low. Add one more tablet for your side-effects, another for your bowels, and one “just in case” and suddenly your breakfast looks like a chemist’s counter.

So where’s it going wrong?

It’s not the people most GPs and pharmacists genuinely care. It’s the system. Tick-box medicine. Software pretending to be empathy. Ten-minute appointments that can’t hold the complexity of a life lived with illness.

The study’s authors were diplomatic: they said the NHS might need to “rethink” its policies on medication reviews. I’d say we need more than a rethink. We need a revolution in how chronic illness and medication are managed one where patients aren’t data points but participants.

How to Survive the Medication Maze

Here’s where you stop being a passive patient and start being the lead investigator in your own case file.

1. Ask: “Why this drug and do I still need it?”

Many prescriptions hang around long after their sell-by date. If you’re stable or no longer benefiting, ask whether it can be reviewed, reduced, or swapped.

2. Bring the list. Every. Single. Time.

Write down everything you take prescriptions, supplements, over-the-counter bits, even the “harmless” herbal stuff. Interactions hide in plain sight.

3. Question the chain reactions.

If you’re on a pill to fix the side-effects of another pill, it’s time for a deeper look. Sometimes the answer isn’t more medicine it’s different medicine.

4. Demand plain English.

If a doctor or pharmacist can’t explain what something does in a sentence you actually understand, they don’t fully understand it either. Push for clarity.

5. Log how you feel.

Keep a simple daily record: energy, pain, sleep, mood. Bring it to your review. Lived data is stronger than any spreadsheet.

6. Know your right to a proper review.

NHS policy says anyone on multiple meds should have regular medication reviews especially older adults or people with complex conditions. You can ask for one anytime.

Because Safety Isn’t Just About Science

Safety isn’t just about how many pills you take it’s about whether those pills are serving you.

The science matters, yes. But so does your story, your side-effects, your sanity. The system measures numbers. You live the consequences.

Maybe what we really need isn’t more software or “structured reviews.” Maybe it’s the kind of care that sees you as a human, not a walking prescription list.

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

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