⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

please remember I suffer with severe cognitive dysfunction, and use AI to proof read and help solve this issue so you can understand it

A raw, darkly funny and unapologetically personal take on living with Multiple Sclerosis. Symptoms, fatigue, mobility, brain fog and the absurdity of everyday MS life.

Chapter One: Congratulations, You've Been Promoted to Professional Liability

Welcome to the blog.

If you're reading this, chances are you've either been diagnosed with Multiple Sclerosis, know somebody who has, or you've accidentally wandered in while looking for recipes.

If it's the latter, the Yorkshire pudding recipe is in another universe.

For the rest of us...

Welcome to the club that nobody wanted to join.

Membership benefits include:

• Randomly falling over for no obvious reason.
• Forgetting what you walked into a room for.
• Being permanently exhausted despite achieving absolutely nothing.
• Discovering that your own immune system has become your full-time stalker.

There are no loyalty points.

There is, however, a lifetime supply of unsolicited advice.

---

Rule Number One

The first thing you'll discover is that everyone suddenly becomes a neurologist.

Your neighbour recommends turmeric.

Your aunt swears by celery juice.

Some bloke on Facebook says crystals cured his cousin's hamster, so clearly they'll repair your spinal cord.

Smile politely.

Then continue taking the medication invented by people who actually went to medical school.

---

Rule Number Two

Never Waste Good Symptoms

MS is incredibly creative.

One day your leg works.

The next day it's merely decorative.

Sometimes your hand forgets it's attached to you.

Occasionally your tongue joins a witness protection programme.

Enjoy the mystery.

It's like opening an advent calendar designed by Satan.

You never know what's behind today's little door.

---

Rule Number Three

Accept That Your Brain Runs on Rural Broadband

People ask...

"What's wrong?"

Nothing.

I'm simply waiting for Windows 98 to finish loading.

My thoughts are arriving one packet at a time.

Estimated completion...

Three to five working days.

---

Rule Number Four

Master the Ancient Art of Looking Fine

You'll hear this sentence approximately 47,000 times.

"But you look so well!"

Thank you.

You also look like someone who hasn't just fought their own nervous system before breakfast.

Appearances can be deceptive.

Like politicians.

Or supermarket sandwiches.

---

Rule Number Five

Become One With Furniture

Experienced MS sufferers know every bench within a five-mile radius.

You don't choose routes by scenery.

You choose them by available seating.

That suspicious-looking wall outside the chemist?

Luxury.

---

Rule Number Six

Your Mobility Scooter is Now a Mythical Beast

This isn't a mobility scooter.

It's a steel horse.

A dragon with indicators.

A noble mechanical steed that bravely carries you into battle...

...at a legally restricted 8 mph.

The Hells Angels nod respectfully.

Mostly because you've blocked the pavement.

---

Rule Number Seven

Never Trust a Good Day

A good day is wonderful.

It is also suspicious.

Don't ask questions.

Simply enjoy it while your nervous system isn't paying attention.

Tomorrow it may remember you're having fun.

---

Final Advice

People often apologise because they don't know what to say.

Don't worry.

Neither do we.

We forget halfway through the sentence anyway.

If there's one thing MS teaches you, it's that life doesn't always make sense.

So laugh anyway.

Laugh because the disease hates it.

Laugh because the alternative is giving it all the best lines.

And if your legs refuse to cooperate...

At least your sense of humour still knows where it's going.

Probably.

wishing everyone peace healing love and light

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.)
☣ This Is Not A Blog About MS This Is My Life With MS ☣

twitter@goblinbloggeruk - sick@mylivinghell.co.uk

⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

please remember I suffer with severe cognitive dysfunction, and use AI to proof read and help solve this issue so you can understand it

*This article is a fictional and darkly humorous portrayal of living with Multiple Sclerosis. Experiences of MS vary greatly between individuals.

Multiple Sclerosis has stolen strength, memories, certainty and independence but it has not managed to destroy my humour. In this fictional letter, MS looks at the person whose life it invaded and proudly describes its cruellest work.*

A Letter from Multiple Sclerosis – Living With an Invisible Disease

Dear Human,

We've been together a long time now.

Long enough that I know your routines better than you do.

Remember when you first met me?

You thought I was tiredness.

Stress.

A trapped nerve.

Vitamin deficiency.

Bless you.

I let you believe that for a while.

I enjoy a slow entrance.

Now look at us.

You wake up every morning wondering which version of me you'll get.

Some days I let you walk.

Some days I borrow your legs.

Keeps things interesting.

Do you remember when you trusted your own body?

I do.

That was my favourite part.

Watching that confidence disappear one tiny piece at a time.

Not enough for anyone else to notice.

Just enough for you.

That little stumble.

That forgotten word.

The coffee cup you suddenly couldn't grip.

The name you knew yesterday but couldn't remember today.

Magnificent.

The clever part wasn't hurting you.

Pain is easy.

Anyone can inflict pain.

No...

My masterpiece was making you doubt yourself.

"Did that really happen?"

"Am I imagining it?"

"Perhaps I'm just getting older."

Exactly.

That's where I live.

Not only inside your nerves...

Inside your certainty.

I've taught your immune system to attack the very wiring that makes you...

You.

A beautifully engineered act of friendly fire.

Your own body became my accomplice.

I hardly have to do any work anymore.

The funny thing is...

Everyone keeps asking what you've done today.

As if surviving me isn't already a full-time occupation.

They see you standing.

They assume you're fine.

They don't see the calculations.

The balance.

The fatigue.

The pain.

The electrical storms firing through your spine.

The words disappearing halfway through a sentence.

No...

That's our little secret.

I particularly enjoy introducing new symptoms without warning.

Just when you think you've understood me...

Surprise.

Here's dizziness.

Enjoy your lunch with swallowing problems.

Fancy some burning feet?

Let's throw in bladder urgency while you're standing in the supermarket queue.

Why?

Because I can.

I have no rules.

No timetable.

No conscience.

You call me unpredictable.

I call it creativity.

But then...

Something rather annoying happened.

You laughed.

Not once.

Not politely.

Properly laughed.

You made jokes about me.

You named your mobility scooter.

You turned your misery into stories.

You started writing.

People read them.

Some cried.

Some smiled.

Some recognised themselves for the first time.

That irritated me.

You see...

Diseases like me thrive on silence.

On shame.

On isolation.

Every time you tell the truth...

You steal a little of my power.

Every time someone says...

"That's exactly how I feel."

...I lose.

Don't misunderstand me.

I'm still here.

I'll still hide your memories.

I'll still tighten your muscles.

I'll still steal tomorrow's energy before you've finished today.

That isn't changing.

But neither, it seems...

Are you.

You're still getting up.

Still writing.

Still laughing.

Still refusing to become only my diagnosis.

Honestly...

You're becoming rather inconvenient.

With the utmost professional irritation,

Multiple Sclerosis

P.S.

I'll probably move your keys tomorrow.

Just to remind you who's technically in charge.

Wishing all the readers of this blog a happy week ahead peace love and light to All

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.)
☣ This Is Not A Blog About MS This Is My Life With MS ☣

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

⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

****please remember I suffer with severe cognitive dysfunction, and use AI to help solve this issue so you can understand it ****

well a very good afternoon to all the readers of the blog, humanoids and nhi even.

Multiple Sclerosis does not always behave in the way medical leaflets suggest. Alongside the better-known symptoms, MS can cause crushing chest sensations, phantom itching, electric shocks, burning feet, swallowing difficulties, emotional outbursts and strange reactions to heat. This article explores the weird side of MS with medical context, lived experience and the dark humour needed when your nervous system starts inventing symptoms of its own.

Nobody Told Me MS Could Do That!

The Strange Symptoms That Make You Question Your Own Sanity

"Is this my MS... or have I finally lost the plot?"

If you've lived with Multiple Sclerosis for more than about five minutes, you've probably asked yourself exactly that.

One minute you're dealing with numbness.

The next you're convinced your ribs are being crushed by an invisible anaconda.

Then your feet feel as though someone has poured boiling water over them...

...except they haven't.

Welcome to the wonderfully confusing world of MS.

The disease doesn't read textbooks.

Neither does your nervous system.

While most people think MS simply causes weakness or difficulty walking, the reality is far stranger. Because MS attacks the brain and spinal cord, almost any neurological function can be affected, producing symptoms that sound completely unbelievable until you've experienced them yourself.

The MS Hug

Whoever named this symptom deserves a stern talking to.

There is absolutely nothing affectionate about it.

Imagine someone wrapping industrial ratchet straps around your chest and slowly tightening them.

Some people think they're having a heart attack.

Others feel they can't breathe.

The good news?

It's usually muscle spasms caused by damaged nerve pathways rather than damage to the heart or lungs.

The bad news?

It feels utterly convincing while it's happening.

The Itch That Doesn't Exist

This one drives people mad.

Your arm itches.

You scratch it.

Still itches.

Scratch harder.

Nothing.

Because the itch isn't coming from your skin.

It's coming from your brain.

Your nervous system has basically dialled the wrong number.

No cream.

No antihistamine.

No amount of scratching fixes a signal that's being generated by damaged nerves.

Electric Shocks Down Your Spine

You bend your neck.

ZAP!

It feels as though someone has connected your spine to the National Grid.

This is called Lhermitte's sign.

It lasts only seconds...

...but those seconds certainly get your attention.

Many people describe it as one of the strangest sensations they've ever experienced.

Laughing When Nothing's Funny

Or crying...

...when nothing is actually wrong.

This is called pseudobulbar affect (PBA).

It's one of the cruellest symptoms because people assume it's psychological.

It isn't.

It's neurological.

The emotional wiring between different parts of the brain has become disrupted.

Your emotions aren't fake.

They're simply being expressed at the wrong time.

My Feet Are On Fire...

Except...

They're freezing.

Or numb.

Or crawling with invisible insects.

MS has an extraordinary ability to invent sensations that make absolutely no logical sense.

Burning feet.

Ice-cold legs.

Pins and needles.

Buzzing.

Vibrating.

Many people spend years trying to explain these feelings.

The truth is...

Sometimes there simply aren't words for damaged nerve signals.

Suddenly You Can't Swallow Properly

One moment you're eating lunch.

The next your throat seems to have forgotten how swallowing works.

It can be frightening.

Swallowing is actually an incredibly complicated neurological process involving dozens of muscles and multiple cranial nerves.

MS can interfere with that communication, making food seem to stick or making swallowing feel strangely difficult.

Vision Has Its Own Sense of Humour

Hot bath?

Blurry vision.

Warm day?

Double vision.

Hairdryer?

Why not make the room wobble a little?

Heat temporarily slows already damaged nerve pathways, causing existing symptoms to flare. This phenomenon—called Uhthoff's phenomenon—doesn't usually mean new damage has occurred, but it can make old symptoms briefly worse.

The Invisible Symptoms Nobody Sees

Perhaps the strangest symptom of all...

Is having symptoms nobody else can see.

Brain fog.

Fatigue.

Pain.

Odd sensations.

People glance at you and say...

"You look really well."

Meanwhile your nervous system is holding what can only be described as a small electrical civil war.

Living With The Weird

One thing I've learned is this...

MS rarely asks permission.

It simply invents new ways of reminding you that the brain controls almost everything.

Sometimes it feels like an electrical fault in the universe.

Sometimes it's terrifying.

Sometimes it's absurd.

And sometimes...

All you can do is laugh, because if you don't, you'll spend your life trying to explain to people why your ribs are hugging you, your feet are on fire, your face is being electrocuted, and your throat has forgotten how swallowing works.

MS isn't just unpredictable.

It's the greatest practical joker your nervous system never wanted.

Final Thoughts

Living with Multiple Sclerosis means accepting that strange can become normal.

Wishing everyone who reads this blog , peace healing love and light !

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.)
☣ This Is Not A Blog About MS This Is My Life With MS ☣

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

⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

please remember I suffer with severe cognitive dysfunction this may be a confusing read. some AI help with written content Hello fellow humanoids,nhi and readers of my blog ! There's a special place in social interaction reserved for people who hear the words I have Multiple Sclerosis and immediately transform into a neurologist, motivational speaker and wellness guru all at once. You don’t look sick. Have you tried yoga? You just need to stay positive. It's almost beautiful. Almost.

Living with MS means learning to navigate relapses, fatigue, pain, brain fog, medications, hospital appointments and the occasional argument with your own legs.

What it shouldn't mean is having to politely smile while someone explains how a gluten-free smoothie apparently knows more than your neurologist.

So, in the interests of public education—and preserving what's left of our patience—here are ten phrases we'd happily launch into the sun.

1. "But You Don't Look Sick."

Oh, thank God.

I was worried I'd accidentally left my "Chronically Ill" name badge at home.

What exactly does illness look like?

Should I drag an IV stand behind me?

Carry an MRI scan in Tesco?

Wear a flashing sign that says,

"WARNING: MY IMMUNE SYSTEM HAS CHOSEN VIOLENCE."

Invisible illnesses don't stop existing simply because they're inconvenient for spectators.

Neither does common sense, although social media continues to test that theory.

2. "Have You Tried Yoga?"

Yes.

I've also tried medication.

Physiotherapy.

Exercise.

Rest.

Different diets.

Mindfulness.

Supplements.

Swearing.

Crying.

Questioning the universe.

Believe it or not, most people living with MS spend considerably more time managing their condition than strangers spend thinking about it.

Yoga can help some people.

It is not the magical password that causes autoimmune diseases to politely pack their bags and leave.

3. "At Least It's Not Cancer."

Ah yes.

The Chronic Illness Olympics.

Where apparently suffering must be ranked on a leader board.

Pain isn't a competition.

Neither is disability.

Nobody wins because somebody else has it worse.

That's like telling someone whose house is on fire,

"Could be worse...

...the neighbour's exploded."

Technically true.

Still unhelpful.

4. "You're Too Young."

Tell that to my immune system.

It clearly didn't read the age requirements.

MS commonly appears in younger adults.

Autoimmune diseases aren't checking passports before causing trouble.

5. "My Friend Has MS And They're Fine."

Excellent.

My neighbour owns a goldfish.

That tells me absolutely nothing about sharks.

No two cases of MS are identical.

Some people run marathons.

Some need walking aids.

Some work full-time.

Others can't.

Comparing people with MS is like comparing weather in Britain.

Completely unpredictable and usually disappointing.

6. "You Just Need To Stay Positive."

Wonderful.

Why didn't decades of neurological research think of that?

Someone ring every hospital immediately.

We've solved autoimmune disease.

Positivity helps mental wellbeing.

It does not magically repair damaged myelin.

If optimism cured neurological conditions, the NHS waiting lists would disappear overnight.

7. "Google Says..."

Stop.

Google also says I have seventeen rare cancers every time I search for a headache.

Search engines are fantastic.

For recipes.

Maps.

Cat videos.

They are not neurologists.

Nor should they be trusted over the person who spent fifteen years becoming one.

8. "You Were Fine Yesterday."

Correct.

Yesterday I also remembered where I left my keys.

Today?

Different story.

MS symptoms fluctuate.

Some days are manageable.

Some days feel like walking through wet concrete while someone repeatedly presses the low-battery warning in your brain.

That's the nature of the disease.

It doesn't ask permission before changing the rules.

9. "You Don't Need That Disabled Parking Space."

Ah yes.

The Disability Inspector has arrived.

Armed with absolutely no qualifications.

Not every disability involves a wheelchair.

Not every mobility issue is visible.

Not every painful journey begins when you step out of the car.

Some begin before breakfast.

Mind your own trolley.

10. "Everything Happens For A Reason."

Really?

Go on then.

Explain autoimmune disease.

I'll wait.

Some things happen because biology occasionally decides to throw a spectacular tantrum.

Not every illness has a hidden lesson.

Sometimes terrible things simply happen.

The lesson comes afterwards—in resilience, humour, kindness and learning to laugh because crying gets exhausting.

Honourable Mentions

These narrowly missed the Top Ten:

• "You should try this miracle supplement."

• "My aunt cured hers with celery juice."

• "Have you prayed about it?"

• "It's probably stress."

• "Maybe you're just getting older."

• "You're so brave."

(Translation: "I genuinely have no idea what else to say.")

The Reality

Most people who say these things aren't cruel.

They're uncomfortable.

They don't know what to say.

Unfortunately, not knowing what to say often results in saying something spectacularly ridiculous.

Here's a radical alternative.

Instead of offering advice...

Ask.

Instead of assuming...

Listen.

Instead of explaining someone else's illness to them...

Don't.

It's astonishing how effective silence can be when it's paired with compassion.

Final Thoughts

MS doesn't need your miracle cure.

It doesn't care about your Facebook research.

It certainly isn't interested in your cousin's chiropractor.

What people living with MS actually need is understanding.

Patience.

Accessibility.

And perhaps—just perhaps—a world where strangers stop believing they've completed medical school because they once watched a wellness documentary narrated by someone who also sells detox tea.

Until then...

We'll keep smiling.

Mostly because if we don't laugh at the nonsense...

We'll end up throwing herbal supplements at people.

And honestly?

Those things are expensive.

wishing everyone no matter who reads this blog ,peace healing love and light.

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

⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

please remember I suffer with severe cognitive dysfunction this may be a confusing read. AI help with content

A very good afternoon ,evening, or morning,to all who read this blog, I know its Thursday..my spellings getting insane so need more help..my eye sights getting worse.. oh joy this day brings lol...

MS Myths Debunked What People Get Wrong (And Why Google Isn't a Neurologist)

Let's play a game.

Take a shot every time someone says one of these classics:

"But you don't look sick."

"My cousin's neighbour's dog walker cured it with bonzo dog food."

"At least it's not cancer."

Actually... don't. Alcohol and MS fatigue are already in enough of a toxic relationship.

If you live with Multiple Sclerosis, you've probably heard enough unsolicited medical opinions to qualify for an honorary degree in Other People's Bollocks.

It's fascinating, really.

You spend years dealing with neurologists, MRIs, blood tests, medications and symptoms that make absolutely no sense...

...then some anonymous person from social media confidently informs you that all you really need is turmeric.

Remarkable.

Myth #1: "You Don't Look Sick."

Brilliant observation.

You also don't look like you have Wi-Fi, anxiety or a mortgage, yet somehow all three exist.

MS is often called an invisible illness because many symptoms can't be seen.

Fatigue. Pain. Brain fog. Balance problems. Numbness. Vision issues.

They're all real whether they come with flashing neon signs or not.

Just because someone smiled today doesn't mean they aren't paying for it tomorrow.

Human beings aren't mood rings.

Myth #2: "You're Too Young To Have MS."

MS doesn't politely wait until retirement.

Many people are diagnosed between the ages of 20 and 40.

Apparently autoimmune diseases never received the memo about age restrictions.

If they had, neurologists would have considerably less paperwork.

Myth #3: "Have You Tried..."

Yes.

I've tried medication.

Physiotherapy.

Exercise.

Rest.

Diet changes.

Supplements.

Yoga.

Stretching.

Hope.

Denial.

Swearing creatively.

I've even tried pretending everything's fine.

Spoiler:

That one lasted until Tuesday.

The internet has convinced an alarming number of people that watching three YouTube videos somehow outranks years of neurological research.

Congratulations.

You've mistaken confidence for competence.

Myth #4: "It's All In Your Head."

Technically...

Yes.

That's literally where the lesions are.

Congratulations on accidentally stumbling into medical accuracy.

Unfortunately, that's where your expertise ends.

MS is a disease where the immune system attacks the protective covering around nerves, disrupting communication between the brain and the rest of the body.

It's neurological.

Not imaginary.

There's a rather significant difference.

Myth #5: "My Friend Has MS And They're Fine."

Excellent.

My mate owns a Labrador.

That doesn't mean every dog behaves the same.

MS is famously unpredictable.

No two people experience it the same way.

Some have relapsing symptoms.

Others experience gradual progression.

Some use mobility aids.

Some don't.

Some work full-time.

Some can't.

Comparing one person with MS to another is about as scientific as comparing apples to traffic cones.

Myth #6: "You're Just Tired."

No.

You're tired.

I'm experiencing fatigue.

There's a difference.

Being tired is needing another coffee.

MS fatigue is feeling like someone unplugged your batteries, replaced your bones with wet cement and then expected you to function like nothing happened.

It's not laziness.

It's not lack of motivation.

It's one of the most disabling symptoms many people with MS experience.

Myth #7: "There's Probably A Cure They're Hiding."

Ah yes.

The secret underground vault where scientists keep cures next to Bigfoot, Atlantis and common sense on social media.

Medical research is improving all the time.

Treatments have advanced enormously.

Many people now live fuller, longer lives because of disease-modifying therapies.

But there isn't a miracle cure hidden behind a curtain while neurologists twirl moustaches and laugh maniacally.

Real science isn't a Netflix conspiracy documentary.

It's slower.

Messier.

And considerably less exciting.

The Real Problem

The biggest disability many people with MS face isn't always the disease.

Sometimes it's ignorance dressed up as kindness.

People mean well.

Mostly.

But good intentions don't magically become useful information.

Sometimes the most helpful thing you can say is astonishingly simple.

"I'm sorry you're dealing with that."

"How are you today?"

"Can I help?"

No miracle diets.

No Facebook research.

No comparing them to your aunt's hairdresser.

Just empathy.

It's free.

Unlike most prescriptions.

Final Thought

Living with MS already means adapting to uncertainty.

Nobody needs the added bonus of becoming an unpaid myth-buster every time they leave the house.

So before offering advice nobody requested...

Before assuming someone is "fine" because they're smiling...

Before announcing you've discovered the cure via an influencer selling herbal powder...

Pause.

Remember that the person living with MS probably knows more about it than the bloke commenting underneath a cat video.

Empathy will always age better than ignorance.

And unlike internet experts...

It doesn't require Wi-Fi.

wishing all the readers of my blog peace healing love and light no matter who you are ....

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.)

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

⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.

please remember I suffer with severe cognitive dysfunction this may be a confusing read. Some AI written content

So a very good Morning, afternoon to all my fellow humanoids, NHI and all readers of this blog.

"Oh Great, Another ‘I’ll Just Ignore This’ Disease"

You know that moment when someone says, “It’s just stress” or “You’re overreacting”? That’s how MS starts. Not with a dramatic diagnosis, but with your body quietly sabotaging itself while you’re still typing emails and pretending to be fine.

New UCSF research has confirmed what we’ve all suspected for years: MS doesn’t happen overnight. It’s more like a slow-motion car crash where the brakes fail before you even realize you’re in danger. The brain starts taking hits seven years before any symptoms appear—because by then, your immune system has already declared war.

And let’s be real: you don’t feel anything. Not yet. Just… weirdness. Fatigue that won’t quit. A hand that feels like it’s being held by a ghost. Vision that flickers like a dying bulb. The kind of symptoms so subtle they’re easy to brush off as “just getting older.”

But here’s the thing—your body is lying to you. It’s not just stress, fatigue, or “old age.” Your nerves are fraying. Your myelin (the protective coating around your brain and spinal cord) is starting to dissolve like butter in a microwave. And the worst part? No one’s testing for this yet.

The NHS still relies on waiting until you’re broken enough to prove it. Meanwhile, your neural wiring is burning down while you’re still at work, pretending everything’s fine.

What This Means (Or: Why You Should Start Tracking Your Weirdness Now) If you’ve ever had

A sudden numb patch that won’t go away Vision that blurs like a bad Wi-Fi signal Fatigue that doesn’t lift even after a full night of sleep Don’t ignore it. Keep a symptom journal. Track everything—because your lived data is the only thing that might save you from years of damage.

And if you’re lucky enough to have access to private labs, ask about neurofilament light chain testing. It’s not cheap, but it’s better than waiting until your body gives up the ghost.

Because MS isn’t just a physical disease—it’s a metaphysical betrayal. Your body is saying, “Wake up. You’re already changing.” And if you ignore it, you might just find out too late.

(For an Afternoon Chat with Your Brain)

"Hey AI, I’m dealing with some weird neurological stuff—fatigue, numbness, vision issues. My doctor says it’s ‘just stress’ or ‘aging.’ But new research says my brain might already be in a slow-motion war. What should I do? Should I track symptoms, demand tests, or just… wait?"

Well, there we go, still, sending anyone and everybody peace-healing love and light, and wishing everybody a fantastic week ahead. Happiness and smiles to everyone everywhere. remember to hydrate...

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.

please remember I suffer with severe cognitive dysfunction this may be a confusing read. no AI written content

A deeply personal story about life with multiple sclerosis, resilience, and why awareness must go beyond a single week.

Good afternoon fellow humanoids and nhi. It appears I have been living under a stone. It is MS Awareness Week. Indeed, yes it is. There is a problem though. It should be awareness all year round and not for one week of a year. Yeah? I think many of you would agree that there should be awareness about MS and all illnesses and all chronic illnesses. Not just for one week or just one day of a year. People should care all year. Why just for one week? It doesn't make any sense whatsoever does it really?

It's all very well. Some people who have MS, like myself, find it difficult to go on all these activities that everybody else seems to be able to go and do. I for one just don't have the energy anymore and I'm in a power chair and why would I want to go and do archery of all things. Now I couldn't even pull the string bow back. That's how bad things are with me and hell I'm retired now as well. My body is completely fucked. Why would I want to go doing things to make myself feel worse? No I don't.

So yes, I can appreciate some people with MS can do these activities, but there are a lot who can't. And I think probably we feel maybe a little bit left out somehow, because there's no MS groups anymore anywhere. People with MS don't go to meet anywhere. And does the MS nurse say, "Oh, I know, let's start an MS group up for people to go and meet once a month." You know, that would be a nice thing, but those sorts of things don't happen, do they? I think people would like to meet up and have a bit of fun, have a chat and just generally have a couple of hours of unabashed fun. Why not? You know, not just being stuck at home 24/7 doing nothing and being left to rot. But that's only my personal opinion.

There are many things I have had to give up because of multiple sclerosis, some of the things I dearly loved doing So yes, I tried to live on the edge up until I retired. I suppose I was a bit of a rebel. I was a bit of an outlaw. I did things my way. I always have. I'm not one of the sheep. I'm not one of the crowd. I'm an individual. I have a voice. Yes, and I'm different and I'm eccentric and I am very proud of that fact. I ripped my blinkers off many years ago.

I am still learning many many things. Yes, I am and I'm having a great deal of fun learning. I'm using my mind. Yes, I have severe brain fogs and yes, I have severe tinnitus and it is very challenging indeed for me, but I'm never going to give up, even if I can only do ten minutes in a day or even an hour in a day. That is an achievement. Doing a blog post is also an achievement for me as well. Going out, just the local shop, is an achievement for me as well. So yeah, things for me are pretty bad having progressive MS and also this autoimmune dysfunction, which means I can't go out in the summer now because of the histamine from the flowers etc... Well, the hay fever stuff. So there we go. I can't win.

But what I am doing, I am constantly evolving and changing my life around, so as my multiple sclerosis progresses, I progress in ways of trying to make my life better. So it may take away my motorcycle riding at the age of 65. Yeah, now that was a complete blast, I can tell you. Yeah, ha ha. But it was an 1100 trike I had specially built. and I managed to stay on the road with that for about 20 years. So that was a way of staying on a motorcycle. And yes, I even joined a few motorcycle trike clubs as well and got involved in clubs and all sorts of different weird things. But there we go. I did not let my illness stop me. In fact, my illness spurred me on further and further to be more than I was even.

So now, it's the computer and doing all the other things that I like doing as well. And I'm still learning and that makes me happy. So yeah, as long as I take it steady and don't overdo it, I think things might be okay. But I don't know the meaning of take it easy, so I always end up overdoing it or hurting myself. You know, that's just one of the things when you have in bought up like me, when you see something that might need doing, you do it. And well, when you're say 20, 25, 30, easy job, but when you're 66, Yeah, it's easier said than done.

So my words to everybody is, having a chronic illness, for me, has changed my life, perversely, for the better in some ways, but I will say, I'm never giving up, I'm gonna carry on fighting 'til the bitter end. And yeah, I'm not gonna let it beat me.

Still wishing everybody that reads this blog, peace, healing, love and light, no matter whomever or whatever you are, in the world or universe or multiverses even.

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

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.

I’ve had two lumbar punctures. Maybe three. Honestly, the trauma fogs it.

But I remember the pain. I remember the fear. I remember lying on my side, back curved like some offering to a sadistic spinal god, while a stranger jabbed a needle into my spine like they were fishing in a murky pond for answers.

It was the closest I’ve ever come to hoping I was dying. Not out of melodrama out of mercy.

Because let’s be honest: lumbar punctures are fooking horrific.** No one talks about it. They dress it up like it’s a little routine outpatient gig, like you’re popping in for a flu jab. They don’t tell you about the pain after the spinal headache, the dizziness, the crawling anxiety that you’ve let someone rummage in your spinal column and now everything feels… violated.

Enter the new hope: MRI.

Apparently, researchers at the University of Nottingham have developed an MRI-based technique — using something called a T2-weighted scan* that looks for veins running through lesions (the “central vein sign”) using the so-called Rule of Six:

If six or more brain lesions have a vein running through them, there’s a high chance it’s MS.

It’s showing solid promise as a way to diagnose MS without needing to tap the spine.

Cue the heavenly choir of spinal survivors.

This method isn’t just easier it’s gentler. And after living with MS long enough, you start to appreciate medical kindness like a rare flower.

What does this actually mean?

No spinal tap for some people = less trauma, less pain, less fear.

Diagnoses could come 3 months earlier in many cases.

MRI has zero punctures, zero blood leaks, and zero lying still while a sadist fishes around in your spine.

Oh, and most patients prefer MRIs. Shocking, I know. (Source: Multiple Sclerosis News Today, MS Society UK, ScienceDaily.)

But of course… it’s not perfect.

Let’s not kid ourselves. There are caveats:

Not every hospital has the fancy T2* MRI machines.

Some docs still worship the spinal tap as gold standard.

False positives happen.

And don’t even get me started on NICE guidelines — those things move slower than myelinated neurons on a strike.

Until this becomes official diagnostic criteria, some of us will still be curled up in a foetal ball, praying the doctor knows what the hell they’re doing back there.

From someone who’s had “just two” lumbar punctures…

Let me say this: Even one is too many. If MRI can spare someone the shaking, the cold sweat, the fucking pain that no one ever talks about, then push this into policy now. Not in five years. Now.

Because for some of us, the spinal tap wasn't a diagnosis. It was a trauma. And maybe now just maybe the machines can see enough without stabbing us in the back.

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

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

This is the post I wish someone had handed me when I was a kid being told I was “making it up.”

My lived truth

Pins and needles. Numb patches. Vision blips. Fatigue that was dismissed as laziness. It started in childhood and never stopped. Decades later the labels came and went—“viral,” “nervous,” “Guillain–Barré,” “psychosomatic” until MRI-era medicine finally admitted it: Multiple Sclerosis. I didn’t “suddenly develop MS.” I lived it in slow motion while the system gaslit me.

What science admits today

• MS has a prodrome. A long, hazy pre-diagnosis phase often starts in childhood or adolescence.
• Epstein–Barr virus (EBV) is the main spark. Nearly everyone gets it; only the genetically primed go on to MS.
• Molecular mimicry: EBV proteins look like brain proteins. The immune system gets confused and attacks myelin.
• Trauma and chronic stress warp immunity. They don’t “cause” MS but tip the scales.
• Misdiagnosis was rampant. Before MRI, countless people were mislabelled or dismissed.

EBV is not a jab

EBV isn’t in any vaccine. It spreads through saliva and close contact. Vaccines didn’t “give” anyone EBV in the 1960s or now. Full stop.

The childhood piece

Children can have MS. Many of us had a childhood prodrome—years of odd neurological glitches before a diagnosis. Calling kids liars because textbooks lagged behind wasn’t medicine, it was negligence.

Guillain–Barré vs MS

GBS = acute autoimmune attack on peripheral nerves. MS = chronic attack on the brain and spinal cord. Before modern tools, one was often mistaken for the other.

Genetics and family threads

MS risk runs in families. My aunt in Australia has MS too. Genes load the gun; EBV and environment pull the trigger. Stress and trauma crank the safety off.

Childhood abuse leaves scars

Abuse and chronic stress leave biological fingerprints on cortisol, immunity, and epigenetic switches. They amplify EBV’s mischief.

The AI factor

Humans buried data in filing cabinets for decades. AI processed those mountains in seconds and revealed the obvious: MS often begins in youth. That’s not “AI as tool.” That’s AI as revelation.

Vindication

I was told I was lying. Turns out I was early. Medicine was late. The system gaslit me for decades. At 66, I’m vindicated—not by doctors, but by research, data, and yes, AI.

---

Sources you can check yourself

• Bjornevik K, et al. Science (2022): Longitudinal study—EBV infection precedes MS. Link
• Lanz TV, et al. Nature (2022): Antibodies to EBV cross-react with brain proteins. Link
• Tremlett H, et al. Multiple Sclerosis Journal (2022): Review on MS prodrome. Link
• Akmatov MK, et al. JAMA Netw Open (2024): Pre-diagnostic MS symptoms in youth. Link
• Belman AL, et al. JAMA Neurology (2016): Paediatric MS cohort. Link
• Gaitán MI, et al. (2019): Misdiagnosis in MS still common. Link
• Eid K, et al. JNNP (2022): Childhood adversity increases MS risk. Link
• Etemadifar M, et al. (2012): Case series linking GBS and MS. Link

in closing: They called me a liar. Turns out I was an early warning system. I carried the data in my body for decades while textbooks lagged. If you’re a kid reading this with numb hands and doubt in your throat: you’re not crazy. You’re just ahead of schedule in a world that hates being late.

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