chronic illness

⚠️ 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.

(A Guide for People Who Are Sick of Medical Bullshit)

Let’s be honest: if you’re reading this, you probably already suspect the vagus nerve is responsible for half the weird crap your body does and you’re not wrong. The vagus nerve is basically the body’s faulty fibre-optic broadband, running all the way from your brain down through your chest and into your gut, sending messages like a drunk carrier pigeon on a windy day.

It’s the longest nerve you’ve got, and when it behaves, life ticks along nicely. When it misbehaves? Your whole system goes down like a dodgy second-hand Dell tower from the 90s.

Here’s the real breakdown the stuff they never explain properly while you’re half-collapsed in A&E, being poked by somebody who can’t pronounce “vagal.”

The Vagus: The Autopilot Wire

The vagus nerve runs your parasympathetic nervous system, which is medical jargon for the “calm down, chill out, don’t die” mode. It’s the opposite of fight-or-flight. It’s rest-and-digest. It’s autopilot.

The problem? When this giant nerve gets irritated, inflamed, or just decides it hates you, it can pull the emergency brake on your entire body with zero warning — which is why vagus-related symptoms always come out of nowhere and hit like a bloody freight train.

1. Your Heart’s On a Leash

This nerve tells your heart when to slow down. That’s lovely until it overdoes it.

Too much vagus activity? Heart rate plummets.

Cue dizziness, sweating, that “oh, this is it then” feeling, and your blood pressure going on holiday.

2. It Runs the Gut Literally

Every vomit, every bowel spasm, every time your stomach has a tantrum the vagus nerve is involved.

If it’s irritated or under-performing, expect:

nausea

diarrhoea

constipation

stomach cramps

digestion that behaves like a toddler with a drum kit

Basically, it decides whether food moves… or doesn’t.

3. Blood Pressure: The Vagus Controls the Dimmer Switch

It works with your baroreceptors (those tiny sensors in your arteries) to keep things steady. When the vagus goes rogue? Blood pressure drops like a stone and you’re left gripping the kitchen counter thinking this is how you die — again.

4. Breathing

Calm vagus = slow and steady. Stressed vagus = shallow, panicky little puffs.

Ever wondered why deep breathing exercises work? They’re literally tugging on the vagus nerve to force it to chill out.

5. Stress, Panic, the Whole Sensory Meltdown

The vagus nerve mediates your stress response. When it freaks out, YOU freak out. Even if nothing’s wrong.

That’s why vagal attacks feel like:

impending doom

full-system shutdown

heart weirdness

tunnel vision

sweating

trembling

fainting

sudden need for a toilet you cannot reach in time

It’s the nerve pulling the plug on itself and everything else.

6. Why People With MS Get It Worse

Your wiring’s already compromised. MS damage → hypersensitive nerves → vagus acting like a frayed extension lead.

So triggers for you can be:

pain

heat

eating

standing

lying

stress

not enough stress

random cosmic spite

Basically: your vagus nerve is a diva.

7. Why Doctors Don’t Take It Seriously

Most GPs are trained to see the vagus nerve as “the fainting nerve.” They don’t get that it affects:

heart rhythm

gut function

blood pressure

breathing

swallowing

voice

inflammation

fatigue

neurological flare-ups

migraines

seizures

pain

It’s involved in almost everything your body does automatically — so when it misfires, it’s bedlam.

In Plain English

The vagus nerve is the massive communication cable between your brain and your organs. When it behaves, it keeps you alive. When it glitches, you become a collapsing, sweating, nauseous sack of biological chaos wondering who you upset in a past life.

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.

Some weekends hit you with a light slap. This one picked me up, shook me like a cocktail, and threw me at the floor for good measure.

Saturday night… well, that one’s going straight into the “Top 3 Worst Episodes of My Life” hall of fame. My body didn’t just glitch — it staged a full-scale neurological mutiny.

The Hit

It came out of nowhere. One moment I was fine, the next my entire autonomic system pulled the emergency brake and launched me into panic hell.

My throat tightened. My swallowing screwed up. My stomach dropped like I’d been pushed off a bridge. My vision became a muffled, tunnelled mess. And my whole body went cold not “a bit chilly,” but corpse-cold.

I’ve had MS for years. I know its tricks. But this was different. This was violent. This was instant.

And here’s the truth I left out the first time: I was scared. Properly scared.

I thought, “Shit… this is it. This is the one where I don’t get back up.” Calling 999

Albertine had to call an ambulance. I didn’t have a choice. This wasn’t a “ride it out” moment. This was the full autonomic shutdown vibe sweating, trembling, throat closing, body shaking, heart refusing to “thump” properly, brain screaming doom.

And then came the worst part:

Forty minutes. Forty minutes of waiting, fighting my own body, trying to stay conscious, trying not to choke, trying not to spiral.

If you’ve ever had a neurological event and waited for an ambulance, you know exactly what that wait feels like. The clock becomes a sadist.

My ears were ringing. My blood pressure tanked. I genuinely thought I was dying.

By the time the ambulance arrived, I was a wreck. They checked me over, confirmed the BP was ridiculously low, stabilised me, and got me back into something resembling a human shape but the damage was done. My system was fried for the night.

Sunday: The Aftershock

Sunday wasn’t much better.

My head felt like a pressure cooker. That weird prickly sensation on the right side of my skull the one that always shows up after an attack set in like an uninvited guest.

My hands pulsed. My head pulsed. The tinnitus screamed like it was trying to win an award.

Breathing felt “off,” not in a dramatic gasping way, but that unnerving internal panic: “Something’s wrong… but what?”

My vagus nerve the drama queen it is had clearly had enough and was still sulking.

And my cognition? Let’s just say I’ve had smoother days. I felt detached. Off. Like I was watching myself from two feet behind my own head.

Monday: The Reset

Now it’s Monday afternoon and I’m calmer, but still not quite right.

The pins and needles are doing their usual “good morning, we live here now” routine in my hands and feet. My head pressure has moved to the top middle that annoying “brain has opinions” spot. My throat feels clogged with half a ton of imaginary phlegm.

But I’m stable. I’m talking. I’m thinking. And I haven’t keeled over.

That’s progress.

Tomorrow: The GP

I’ve got the doctor sorted for tomorrow, and that’s the sensible move. I’m not messing about after this one this was the worst in years, and we finally know enough to start demanding answers instead of shrugging and hoping.

Chest tightness? Swallowing issues? Autonomic chaos? Blood pressure on holiday? Yeah, the GP can have the whole bloody report.

I’m not going down early because I tried to “tough it out.” I’ve seen too many people die playing that game.

Why I’m Writing This

Because this is the real face of chronic illness not the brochure version, not the charity-approved inspirational poster. This is the gut-level reality.

My blog is about truth. Raw, ugly, darkly funny truth.

Life with MS isn’t pretty. It isn’t tidy. It isn’t inspirational every day. Some days it’s a war you didn’t ask for and you fight it anyway.

If you’re going through similar, I want you to know this:

You’re not weak for being scared. You’re not dramatic for calling 999. You’re not overthinking it if your body is shutting down. And you’re not alone.

We survive these attacks by being honest, prepared, and stubborn as hell.

I’m still here. Still fighting. Still writing.

Tomorrow will be another chapter. I’ll survive that too.

I thank my wife Albertine she saved me I love you forever....

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.

There are days with MS… and then there are those days the days where your entire nervous system decides to re-enact a flea circus on a hot tin roof.

So let me paint the scene for you:

I Am a Kitten. A Flea-Infested Kitten.

Not a majestic panther. Not a sleek predator. No. A tiny, confused goblin-cat with an arse like a bonfire and fleas having a rave on my spine.

I’m sprinting around the imaginary room crashing into furniture, tripping over nothing, having a full cosmic meltdown because the fleas/MS won’t stop chewing on every nerve ending like they’ve paid for an all-you-can-eat buffet.

Lights flickering. Shadows being weird. Brain fog thick enough to butter toast with. Hallucinations just to keep things spicy.

Everything MS can throw at me it throws all at once.

And there I am, this poor invisible kitten of doom, doing laps like I’m possessed by 15 demons and a Red Bull sponsorship. Things fall off shelves. Air becomes lava. Reality breaks down like a cheap knock-off mirror in a funfair.

MS as Fleas

Imagine your entire body itching in places that don’t exist. Imagine the fleas having meetings about unionising. Imagine scratching your own soul because everything feels wrong.

That’s MS. Tiny bastard parasites gnawing at the wires of your meat suit.

The Choice

So here’s the question:

Would I rather be a flea-infested kitten with an itchy bum? or Would I rather be a 66-year-old strapped to a power chair with MS chewing on my circuits?

Answer?

I’ll take the MS and the grumpy realism, thanks. At least I don’t have to lick my own arse to feel clean.

Fleas? No chance. I’ve been bitten enough by life as it is.

Besides a kitten with fleas is chaos. A man with MS in a power chair? That’s controlled chaos. A battle-hardened wizard rolling through hell’s hallway giving death stares to anyone who gets in the way.

Moral of the Story

MS is the fleas. You’re the kitten. Some days you sprint. Some days you hide. Some days you crash into the coffee table and take the lamp with you.

But you’re still here. Scratching. Surviving. Snarling. And somehow laughing at it all.

Because the alternative? Nah.

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 Day SoundCloud Broke Me

So yes, I decided I was going to do a spoken blog. A podcast, as the young ones call it. I thought, I know SoundCloud! It sounded cool, right? Took me the better part of a day just to work out how to get the bloody thing working. My head felt like porridge. Thick, slow, and slightly burnt.

And here’s the kicker there were no proper help files. None. Just endless “click here” nonsense that didn’t tell you what any of it meant. Categories? Forget it. I wanted something like health, MS, disability, ranting man in a power chair but apparently, SoundCloud only understands “hip-hop” and “deep house”.

In the end, I managed to upload it. Two listens. And those two were me and Albertine. Brilliant.

The Fogged Mind vs The Digital Void

Trying to navigate software while your brain is busy running Windows 95 on half a stick of RAM is pure torture. Years ago, I’d have breezed through this. Now? My brain hits that cognitive wall and just slams shut. Pain behind the eyes, words disappearing mid-sentence, kittens mewing somewhere in the background and I’m shouting at my computer like it owes me rent.

And this is where I admit it: technology beats me sometimes. Not because I’m stupid. Not because I’ve lost interest. But because MS eats focus like a vampire eats virgins.

Onward, to Spotify (or Madness)

So, next plan: I’m going to try Spotify for Podcasters. Maybe it’ll work. Maybe it’ll eat my brain again. But I’ve come this far, and I’m not about to stop now.

Because this voice my voice deserves to be heard. Even if it’s fogged, cracked, and full of swear words that my editing AI politely erases.

To anyone out there who actually knows what they’re doing and can help me you are my hero. There will be a special place for you in My Living Hell, complete with eternal gratitude and possibly biscuits.

For now, I’ll just sit here, hurting, tired, kittens mewing, brain screaming, and muttering to myself like an old wizard fighting a Wi-Fi demon.

Because that’s life with MS. You fight the fog, the pain, and sometimes, SoundCloud itself.

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.

You know the world’s gone mad when you get told off by a chatbot.

There I was, trying to have a grown-up conversation with this so-called AI Caregiving Expert. It started all sweet and helpful “How can I support you today?” before morphing into a finger-wagging nutritional dictator. The thing basically told me I was a dietary disgrace.

I explained, politely, that I can’t eat half the stuff on its saintly little list. You’d think that might register with its “deep learning.” Nope. It just doubled down like a robot dietician on a power trip. “You should eat more kale.” Sure, right after I pop down to Unicorn Foods and pick up a smoothie made of dreams and lies.

Meanwhile, I’m here surviving the reality of chronic illness body chemistry resembling a nuclear experiment, and a digestive system that treats most foods like invading armies. But the AI knows best, apparently.

I swear it wagged its virtual finger at me. Somewhere in the cloud, it probably marked me as non-compliant. I’m one firmware update away from being grounded by a health app.

Lesson learned: empathy isn’t codeable. If these things ever replace human carers, I’ll need a circuit breaker and a stiff drink.

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