🎗️ This Blog is a space for honest conversations about my personal experiences with MS, mental health, and the weird paranormal, liminal, and everything in between. I’m not a doctor, therapist, or expert in the unexplained; I’m just someone sharing my story and offering solidarity. If you’re struggling, please reach out to a trusted friend, support group, or professional. And if the weird stuff sparks your curiosity, remember: stay open-minded, but always prioritise your well-being.🎗️

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

What If Multiple Sclerosis Could Speak?

Giving the Monster a Voice

What If Multiple Sclerosis Could Speak?

Most people think Multiple Sclerosis is a disease.

They're right.

But sometimes it feels like something far more personal.

Sometimes it feels like a shadow that quietly follows you through life, waiting for the perfect moment to take something away.

Not everything.

Just enough.

A little balance.

A little vision.

A little memory.

A little confidence.

Tomorrow it might be your strength.

Next week your coordination.

Next month your words.

MS rarely storms through the front door.

It moves in quietly, rearranges the furniture of your brain, and waits to see how long it takes before you notice that nothing works quite the way it used to.

The cruel part isn't always the pain.

It's the uncertainty.

You never know what the next morning will bring.

Some days you wake up almost feeling like your old self.

Other days your body simply shrugs and says,

"Not today."

The Invisible Thief

Living with MS often feels like sharing your body with an unwelcome guest.

One that never contributes anything useful.

One that constantly breaks things, then pretends it wasn't there.

It steals memories.

It steals energy.

It steals confidence.

Then it hides behind the words...

"But you look fine."

Invisible illnesses create an impossible contradiction.

People judge what they can see.

MS does most of its damage where nobody can.

That can leave people feeling isolated, frustrated, and misunderstood, even by those who genuinely care.

So I Asked Myself...

What if MS had a voice?

Not the medical language of MRI scans, lesions, immune cells and disease-modifying therapies.

An actual voice.

What would it say?

Would it boast?

Would it laugh?

Would it whisper?

Would it manipulate?

The more I thought about it, the more I realised something unsettling.

MS behaves almost like a psychological villain.

It doesn't usually attack all at once.

It chips away.

Slowly.

Patiently.

Methodically.

That idea became the inspiration for a song written entirely from the perspective of Multiple Sclerosis itself.

Not to glorify the disease.

But to expose it.

To drag it into the light.

To make the invisible visible.

Why Music?

Music can express emotions that ordinary conversation struggles to reach.

A neurologist can explain demyelination.

An MRI can show lesions.

A blood test can rule out other conditions.

But none of those things explain what it feels like to lose trust in your own body.

A song can.

Music allows fear, anger, grief, sarcasm, resilience and hope to exist in the same four minutes.

That's something medicine isn't designed to do.

Turning the Monster into a Character

When we give fear a face, we also give ourselves the opportunity to answer back.

Instead of MS being an unnamed force hidden inside the nervous system, it becomes a character.

A villain.

Something that can be challenged.

Mocked.

Refused.

That's exactly what happens in the final verse of the song.

The disease believes it has won.

Then the person living with MS starts laughing.

Starts writing.

Starts creating.

The monster expected silence.

Instead...

It became the subject of the story.

Why I Write

People sometimes ask why so much of this blog mixes dark humour with difficult subjects.

Because laughter and honesty are not opposites.

Sometimes they're survival tools.

Sometimes making the monster ridiculous is the first step towards making it smaller.

If a song, a story, or even a sarcastic joke helps someone living with MS feel understood for five minutes, then it has already achieved something worthwhile.

The disease may scar the brain.

It doesn't get to write the ending.

---

Final Thoughts

Multiple Sclerosis changes lives.

It changes careers.

Relationships.

Plans.

Dreams.

But it doesn't automatically take away identity.

We are still the authors of our own stories.

Sometimes those stories are tragic.

Sometimes they're funny.

Sometimes they're angry.

Sometimes they're all four before lunchtime.

And perhaps that's why imagining MS with a voice matters.

Because once the monster starts talking...

We finally get the chance to answer.

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 🎗️

Tumblr is @livingwithmsblog twitter@livingwithms email warlock@mylivinghell.co.uk 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

🎗️ This Blog is a space for honest conversations about my personal experiences with MS, mental health, and the weird paranormal, liminal, and everything in between. I’m not a doctor, therapist, or expert in the unexplained; I’m just someone sharing my story and offering solidarity. If you’re struggling, please reach out to a trusted friend, support group, or professional. And if the weird stuff sparks your curiosity, remember: stay open-minded, but always prioritise your well-being.🎗️

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

Well it's Tuesday morning and we are heading towards autumn that time of the year of cold rain, fog, cold rain, fog and horrible weather. And I'm wishing all readers of this blog a very happy good morning afternoon evening no matter wherever you may be in the world or universe.

My Living Hell podcast lives

Well, the My Living Hell podcast lives. I've done all the tests, everything looks good, so we will be doing podcasts shortly. So that's excellent news, and I will be covering a wide range of subjects, not just multiple sclerosis and mental health, but also things to do with the paranormal and things people don't tell you about when you have MS, which is rather interesting.

Myelin Maniacs

Myelin Maniacs, well today, Tuesday, it will be the first recording. Yes, I have it on Great Authority from Stigsy that tonight we go and do some recordings for the podcast to be released when Stigsy has Done what he has to do to it. So in the next few weeks be looking on the Myelin Maniacs website and you might see the first podcasts. Yes, they will be coming soon and I shall let you know on the My Living Hell when these podcasts will be. It is going to be quite exciting and I'm looking forward to it and I'm going to be a co-host and I really am looking forward to putting my point of view, my personal point of view over and listening to other points of view and gaining understanding from other people about this strange illness that we seem to have that nobody really knows how we got it, nobody really knows how you cure it but it's there and we have to make the best of things.

So, here is a poem for Autumn or the Vernal Equinox.

Equinox, MS & the Fog

Tomorrow the seasons change. Autumn arrives with its usual dramatic entrance cold mornings, darker evenings, leaves falling everywhere as though the trees have finally had enough of life too. And then there's me. Still here. Still dealing with MS. Still trying to remember why the hell I walked into the kitchen. Brain fog. That wonderful little gift from MS where your brain apparently decides to close the office early without telling management. You know that feeling… You know you've got something to say, you know you knew what it was, you can almost reach it… And then nothing. Gone. Probably somewhere with my missing socks. The equinox is supposed to be about balance. Day and night standing equal. Funny thing is, MS doesn't seem particularly interested in balance. One day you're functioning, the next your body appears to have filed a formal complaint against you. Fatigue. Pain. Brain fog. The ridiculous uncertainty of not knowing what tomorrow is going to throw at you. And yet… the seasons keep changing. Summer quietly disappears. Autumn takes over. Winter waits around the corner like some bastard who knows you're coming. But perhaps there's something worth remembering in all this. The trees don't apologise for losing their leaves. They don't call themselves failures. They don't stare at the branches and wonder why they're not still green. They simply let go. And perhaps that's something those of us living with MS need to remember. Some days we'll have more to give. Some days we won't. Some days the brain fog will roll in so thick you couldn't find your arse with both hands and a map. And that's okay. Tomorrow night, the darkness will be a little longer. But darkness isn't the end of the story. It's just another part of it. So here's to the equinox. To autumn. To surviving another season with MS breathing down our necks. To the days when the brain works… and the days when it clearly has gone down the pub without telling us. And most importantly here's to still being here. Still fighting. Still laughing when we can. Still swearing when necessary. Still telling MS: “You're not getting the last word.” Not today. Not tomorrow. And certainly not while I've still got enough brain fog to write the bloody story.

Still, sending everybody peace, healing, love and light. and wishing everybody a happy autumn equinox when it arrives tomorrow. And let's hope that the weather will be fair and not foul. Oh, and a sudden thought, I'm going to be uploading a lot of music and it's all about MS and the effects, but it's done in sort of psychedelic weird lyrics and stuff. It's, well, come out of my head and gone into a music programme. So I will be posting some more up and that might be quite interesting.

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 🎗️

Tumblr is @livingwithmsblog twitter@livingwithms email warlock@mylivinghell.co.uk 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

🎗️ This Blog is a space for honest conversations about my personal experiences with MS, mental health, and the weird paranormal, liminal, and everything in between. I’m not a doctor, therapist, or expert in the unexplained; I’m just someone sharing my story and offering solidarity. If you’re struggling, please reach out to a trusted friend, support group, or professional. And if the weird stuff sparks your curiosity, remember: stay open-minded, but always prioritise your well-being.🎗️

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

Congratulations on Your Multiple Sclerosis!

Thank you for choosing MULTIPLE SCLEROSIS™.

You didn't actually choose it, obviously.

It arrived without being ordered, cannot be returned, has no warranty and customer services appear to consist mainly of someone saying:

“We'll see you again in six months.”

Your MULTIPLE SCLEROSIS™ package may contain:

• One unreliable nervous system
• Several mysterious symptoms
• A bladder with independent political ambitions
• Brain fog
• Fatigue
• Random pain
• Questionable balance
• Various pharmaceutical products
• Approximately 47 hospital letters
• And one leaflet featuring suspiciously cheerful people walking through a meadow

Batteries not included.

Actually, batteries may have been the first fucking thing to go.

Welcome to the unofficial instruction manual.

---

IMPORTANT SAFETY INFORMATION

Before operating your body, please read these instructions carefully.

Failure to follow the instructions will make absolutely no difference because your nervous system isn't reading them either.

Symptoms vary enormously between people with MS, so your particular model may behave completely differently from somebody else's.

This is apparently considered a feature rather than a manufacturing defect.

---

STEP 1: ASSEMBLE YOUR SYMPTOMS

Tools Not Included

Upon opening your MS package, you may discover a seemingly random selection of components.

These can include:

Fatigue Battery permanently displaying 14%.

Brain Fog Words may disappear without warning.

Tremor Coffee transportation system compromised.

Spasticity Muscles operating under their own management.

Pain May appear in locations where absolutely nothing appears to be wrong.

Dizziness Floor and ceiling occasionally exchange responsibilities.

Bladder Problems Warning system may activate approximately four seconds before catastrophe.

Numbness Useful when you don't want sensation.

Less useful when you actually fucking do.

IMPORTANT:

Your symptoms may change, disappear, return, mutate or invite several friends around without prior notice.

Do not attempt to understand this.

Neurologists have machines for that and they're still scratching their heads.

---

STEP 2: IGNORE THE “INVISIBLE ILLNESS” COMMENTS

Your MULTIPLE SCLEROSIS™ model may look deceptively normal from the outside.

This can cause members of the public to malfunction.

Common error messages include:

“But you look fine!”

Thank you.

My nervous system will be delighted to hear that.

“You don't look disabled.”

Excellent. I'll inform the lesions.

“Everyone gets tired.”

Yes.

And everyone gets headaches.

That doesn't mean everyone has a fucking brain tumour.

“You were alright yesterday.”

Correct.

Yesterday was yesterday.

This is apparently how time works.

“Have you tried thinking positively?”

No.

I've been deliberately thinking negatively because apparently that's what destroys myelin.

Thank God you've arrived.

Recommended response:

Smile.

Nod.

Imagine hitting them with the inspirational leaflet.

Continue with your day.

---

STEP 3: ACCEPT THAT YOUR BODY IS NOW A HAUNTED HOUSE

Welcome home.

Lights flicker.

Things creak.

Doors don't work properly.

Strange noises occur at 3 a.m.

Occasionally something touches you when absolutely nothing is there.

Congratulations.

You are now living inside Neurological Amityville.

Random burning sensation?

Ghost.

Electric shock down your spine?

Ghost.

Foot suddenly feels freezing despite being perfectly warm?

Definitely ghost.

Leg starts vibrating?

Poltergeist.

Mystery stabbing pain in your left arse cheek at 2:17 a.m.?

We don't discuss what lives in the basement.

The important thing is not to panic.

Eventually you become accustomed to saying:

“That's new.”

...and then carrying on making tea.

---

STEP 4: INSTALL BRAIN FOG

Brain Fog comes pre-installed with many MULTIPLE SCLEROSIS™ packages.

Once activated, ordinary language may become temporarily unavailable.

For example:

Kettle becomes water boiling thing.

Remote control becomes television changer.

Refrigerator becomes cold cupboard.

Socks become foot gloves.

Spoon becomes food shovel.

Names are particularly vulnerable.

People you've known for twenty years may suddenly become:

Mate.

Troubleshooting:

Q: Why did I walk into this room?

A: Unknown.

Q: What was I looking for?

A: Unknown.

Q: Why am I holding a screwdriver?

A: Extremely unknown.

Please return to the previous room.

The original thought may reload automatically.

---

STEP 5: ENERGY MANAGEMENT

Your body contains a rechargeable battery.

Unfortunately it appears to have been purchased from a suspicious bloke at a car boot sale.

You may wake up displaying:

27%

Showering: -10%

Getting dressed: -10%

Making breakfast: -8%

Leaving the house: -30%

Someone saying “You should get out more”: -97%

Battery critically low.

Shutting down.

IMPORTANT:

Energy cannot necessarily be restored by simply “having a little rest.”

Sometimes resting makes you tired.

Sometimes sleeping makes you tired.

Sometimes doing absolutely nothing makes you tired.

This is known as MS fatigue.

It is not laziness.

It is not ordinary tiredness.

And it cannot be cured by somebody enthusiastically suggesting yoga.

---

STEP 6: INSTALL MOBILITY UPGRADES

Your original walking equipment may occasionally become unreliable.

Optional accessories include:

Walking stick.

Crutches.

Rollator.

Wheelchair.

Mobility scooter.

Grab rails.

Anything else that helps you get through the bloody day.

These are tools, not defeats.

If a mobility scooter means you can travel somewhere you couldn't otherwise reach, then the scooter isn't taking away independence.

It's giving some back.

Also, scooters come with horns.

Use this information responsibly.

Or don't.

BEEP BEEP, MOTHERFUCKERS.

---

STEP 7: MANAGE THE BLADDER EXPANSION PACK

This optional feature is apparently extremely popular with MS.

Symptoms may include:

Needing a wee.

Needing a wee urgently.

Needing a wee extremely urgently.

Needing a wee approximately eleven seconds after you've just had a wee.

And the legendary:

I WAS FINE THREE SECONDS AGO.

Experienced users eventually develop an extraordinary geographical skill.

They do not enter a building and see:

Restaurant.

Shop.

Pub.

Cinema.

They see:

TOILET.

Everything else is secondary.

---

STEP 8: UPDATE YOUR DAILY PLANNER

Old daily planner:

9:00 — Shopping 11:00 — Coffee 1:00 — Lunch 3:00 — Visit friend 6:00 — Dinner

MS daily planner:

9:00 — Wake up.

9:07 — Assess damage.

9:15 — Reassess ambitions.

10:30 — Recover from getting dressed.

12:00 — Consider doing something.

12:03 — Too ambitious.

1:00 — Eat.

2:00 — Forget what today's plan was.

3:00 — Nap.

5:00 — Wake up feeling strangely more tired.

7:00 — Wonder where entire fucking day went.

10:00 — Suddenly unable to sleep.

Excellent system.

---

STEP 9: PERFORM ROUTINE MAINTENANCE

There is currently no magical service interval where somebody replaces your nervous system and sends you home good as new.

Annoying, frankly.

So maintenance becomes management.

Rest when you need to.

Move when you can.

Use the mobility aid.

Take the break.

Cancel the plan.

Accept help when you want it.

Tell people no.

Laugh when something is genuinely ridiculous.

Swear when something genuinely deserves swearing at.

You do not receive bonus points for making yourself completely fucking miserable just to prove you can still do something without assistance.

---

STEP 10: TROUBLESHOOTING

Problem: Leg not responding.

Solution: Turn leg off and back on again.

Unfortunately no switch has yet been located.

---

Problem: Extreme fatigue.

Solution: Rest.

If unsuccessful, rest from resting.

---

Problem: Forgotten word.

Solution: Describe object increasingly aggressively until somebody guesses it.

---

Problem: Tremor.

Solution: Tell everybody you're auditioning as a cocktail bartender.

---

Problem: Balance failure.

Solution: Wall.

---

Problem: Bladder warning.

Solution: RUN.

Correction:

Move toward toilet at maximum currently available neurological speed.

---

Problem: Someone says, “But you look fine.”

Solution: System recommends sarcasm.

---

STEP 11: WARRANTY INFORMATION

Your MULTIPLE SCLEROSIS™ package comes with:

NO WARRANTY.

There are no refunds.

No exchanges.

No replacement nervous systems.

No loyalty points.

And apparently no customer satisfaction questionnaire.

However...

You may acquire several unexpected accessories along the way.

A darker sense of humour.

An impressive tolerance for bullshit.

An encyclopaedic knowledge of toilets.

An ability to appreciate good days differently.

A community of people who understand why “I'm tired” can mean something far beyond needing an early night.

And the ability to keep going when your body is behaving like something assembled on a Friday afternoon before a bank holiday.

---

FINAL ASSEMBLY CHECK

Are all components working?

No.

Have you followed the instructions?

Mostly.

Did it help?

Debatable.

Are you still here?

Yes.

Then congratulations.

Assembly complete.

Well...

Complete-ish.

Because MS may be part of your life.

It may alter what you can do.

It may alter how you do it.

It may occasionally reduce an ordinary Tuesday to a badly written neurological sitcom.

But you are not the faulty component.

The disease is.

So use the stick.

Ride the scooter.

Take the nap.

Forget the word.

Find the toilet.

Laugh when you can.

And when MULTIPLE SCLEROSIS™ produces another completely undocumented error...

Consult the official troubleshooting procedure:

“Oh, for fuck's sake. What now?”

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 ☣

Tumblr is @livingwithmsblog twitter@livingwithms email warlock@mylivinghell.co.uk 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

🎗️ This Blog is a space for honest conversations about my personal experiences with MS, mental health, and the weird paranormal, liminal, and everything in between. I’m not a doctor, therapist, or expert in the unexplained; I’m just someone sharing my story and offering solidarity. If you’re struggling, please reach out to a trusted friend, support group, or professional. And if the weird stuff sparks your curiosity, remember: stay open-minded, but always prioritise your well-being.🎗️

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

The First Proper Podcast

Well, it looks like I've finally got all the technical problems sorted out with the podcast. So next week, I'm going to record the first proper episode.

And believe me, this one is going to be quite interesting.

The subject is MS — and what happens after you're told those two little words: Multiple Sclerosis.

Because nobody really tells you what comes afterwards.

What happens to your family? What happens to your friends? What happens to your relationships? And what happens to you when your life suddenly changes forever?

I'm going to talk about my own experience. How people didn't believe me. How some people simply didn't want to know me any more because of those two stupid little letters: MS.

It's going to be raw. It's going to be honest. And yes, you're going to hear it straight from the Warlock's mouth.

No fancy production. No pretending everything is perfect. If I get brain fog, you'll hear the brain fog. If I lose my train of thought, you'll hear me trying to find the bloody thing again. 😂

That's the whole point of this podcast.

It's real.

I'll probably also touch on adoption, because strangely enough, that is connected to my MS story. But I won't be telling the whole story in this episode, because my adoption deserves an episode of its own.

That story goes back to when I was a child — when I was a waif and a stray, as they used to say. My older sister was taken away too.

And there is a much bigger story there about being taken from our mother, being adopted, and what happened afterwards. My mother told me herself, when I eventually met her, that she didn't want me to be taken from her.

That is a story I will tell.

But that's for another episode.

For now, we're going back to those two little letters:

M. S.

What they did to my life. What they did to the people around me. And what happened afterwards.

So if you've been following the blog, thank you.

And if you've listened to the test podcast, thank you for putting up with the world's least fancy podcast production. 😂

There won't be bells and whistles. There won't be loads of editing.

There will just be me.

The real, unedited Warlock.

So stay tuned to mylivinghell.co.uk

The first proper episode is coming sooner rather than later — assuming my brain fog allows me to actually go deep enough to record the bloody thing.

Have a fantastic weekend, take care...

And I'll see you on the other side.

— The Warlock

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 ☣

Tumblr is @livingwithmsblog twitter@livingwithms email warlock@mylivinghell.co.uk 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ This Blog is a space for honest conversations about my personal experiences with MS, mental health, and the weird paranormal, liminal, and everything in between. I’m not a doctor, therapist, or expert in the unexplained; I’m just someone sharing my story and offering solidarity. If you’re struggling, please reach out to a trusted friend, support group, or professional. And if the weird stuff sparks your curiosity, remember: stay open-minded, but always prioritise your well-being. ⚠️

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

For a few days before the MRI, I had what I call white coat syndrome. Properly speaking, white coat hypertension is when your blood pressure shoots up around doctors, hospitals and anything wearing a lanyard. What I had was the whole rotten family: medical anxiety, claustrophobia, bad dreams, nerves buzzing, bladder acting like it had joined the resistance, and a head already planning its escape route.

I kept saying I was fine. Of course I did. When Albertine asked how I felt about going for the MRI, I said, “Everything is okay. I’m fine.”

That was bollocks.

What she did not know at first was that I had been having horrible dreams about the MRI machine. That white, soulless tube. The tube I hate going into because I hate enclosed spaces. For several days before Sunday, it was living rent-free in my head.

With MS, stress is not just a thought. It gets into your body. The fatigue gets louder, the nerve feelings get weirder, the bladder gets more urgent, sleep goes to hell and your brain starts behaving as if it has been left out in the rain with the lid off. You can feel like you are preparing for a minor medical appointment while your body has decided it is the final scene of a disaster film.

Monday morning, as I write this, I am definitely not back to any sort of normal — which, with MS, is a fairly flexible concept anyway. The drive had sapped every last bit of energy from me. Then, about an hour and a half or two hours after getting home, everything kicked in. I felt strange. My head felt like it was on another planet. It is hard to explain, but it is one of those horrible MS feelings where you know you are not right, yet you cannot put it neatly into words for somebody who has never lived in a body with faulty wiring.

The MRI itself was not exactly a spa day.

I was lying on a platform with my head wedged into a restraint of some sort. Then they put the mask over my face. I asked what it was, and the chap told me it helped with the scan.

Helpful. Lovely. Grand.

The moment that thing went over my face, My Living Hell properly began.

It was the sudden enclosure. That instant feeling of, “Oh God. Oh dear.” My body started reacting badly. Bear in mind, I do not like enclosed spaces at the best of times. He told me that if I had any problems, no matter what, I should give them a shout.

Well, that was reassuring.

I had written on the form, in big letters, that I suffer with white coat syndrome and that I have a fear of enclosed spaces. They asked me what white coat syndrome was. I suspect “my body panics around medical stuff because life has repeatedly given it excellent reasons to” may have been too long for the form.

Then I was sent up the tube with a little alarm ball in my hand. I was told to press it if I felt weird.

As soon as I went in, blind panic arrived like it had been booked in for the same appointment.

How the hell do I get out of here if something goes wrong?

That was the only thought going through my mind for the first few minutes. I was looking for escape routes from a machine specifically designed not to have any. This was probably my fourth MRI, so you would think I would be used to it by now. Apparently not. Trauma does not become charming with repetition.

The machine began its full industrial-noise concert. Whirring, banging, clanking, alien drilling sounds — all loud enough to make you wonder whether NASA had accidentally built the hospital next door. I had headphones and earplugs in, supposedly to protect me from the noise. “Supposedly” is doing a great deal of work in that sentence.

I lay there holding that little ball as if it were a sacred egg and the only thing between me and a full-blown escape attempt. It was the weirdest feeling and the weirdest mindset. If you have never been through it, trust me: it is a real head fuck. No fun whatsoever.

I would rather have a lumbar puncture than an MRI.

Actually, no. I have had three lumbar punctures. They were horrendous too. So perhaps I would rather be left alone with a cup of tea and no medical equipment within a ten-mile radius.

Then, because apparently the day had not supplied enough inconvenience, I had to take my nipple rings out. Now I cannot get the damn things back in. So I will probably have to pay somebody to put them back through. What an absolute faff. Plastic bars may be the sensible answer if there is another MRI in my future, because I do not fancy yanking them out again just to visit the white tube of doom.

Sorry if that is too much information. But this is my blog. You knew what you were getting into.

Back in the scanner, the sounds carried on. My body began doing what it does: spasms in my legs, spasms in my arms. At one point they pulled me out because they could see I was in discomfort. The nice young man took the mask off, had a chat with me, and then it was back into the hole of death I went.

The descent was very slow. Even slower than my three-wheel trolley of death — otherwise known as my powerchair.

I went deeper into that white tube, still clutching the alarm ball for dear life. I saw a little red-and-white target at the end and thought, “How much longer have I got to put up with this?” I tried to tell myself not to think about what was happening. Naturally, that made me think about it even more.

It felt like an eternity.

Eventually, I was pulled back out. The staff asked whether I was okay. I said I was as well as could be expected with what was wrong with me, and I laughed a bit. Because if you cannot laugh at the absurdity of it all, you may as well scream into an MRI scanner — which, to be fair, I was considering.

Then I found myself in the lift, heading down to the ground floor, and there was my wheelchair still waiting for me. Small mercies. I was ushered through the doors and saw Albertine in the waiting room. I think I might even have smiled. I was bloody glad to be out of there.

I got back into the WAV, took a slug of water, and headed home. Thankfully, I did not take any strange directions this time. The old VW has already cost me nearly two grand in injectors this year, because apparently it too has decided to develop a chronic condition. It is over ten years old, expensive, temperamental and occasionally makes alarming noises. We have a lot in common.

Once home, I did my blog and then spent the afternoon feeling strange in my head and body. Still do, if I am honest. That is MS for you: a medical ordeal can finish, but the body does not always get the memo.

So that was my MRI experience: the white tube, the noise, the mask, the spasms, the panic, the tiny alarm ball and the overwhelming desire to be anywhere else on Earth.

To anyone facing an MRI while living with MS, anxiety, claustrophobia or all three: you are not weak, dramatic or making a fuss. Your body is reacting to something it finds frightening. Tell the staff. Ask questions. Ask for breaks if you need them. Hold the bloody ball if it helps.

And if you get through it, you have earned a very large cup of tea — or whatever gets you safely back into the land of the living.

Peace, healing, love and light to everyone reading this. Have the best week you can manage. The cold weather is coming, so get the blankets and warm stuff early, before the shops decide they have vanished into the same dimension as common sense.

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 ☣

Tumblr is @livingwithmsblog twitter@livingwithms 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ This Blog is a space for honest conversations about my personal experiences with MS, mental health, and the weird paranormal, liminal, and everything in between. I’m not a doctor, therapist, or expert in the unexplained; I’m just someone sharing my story and offering solidarity. If you’re struggling, please reach out to a trusted friend, support group, or professional. And if the weird stuff sparks your curiosity, remember: stay open-minded, but always prioritise your well-being.⚠️

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

Sunday morning. Rain hammering down. The sort of day that makes you want to pull the curtains, swear at the weather and pretend civilisation has been cancelled.

Instead, I had a two-hour round trip to the hospital for an MRI.

Luxury.

White coat syndrome had already arrived the night before, naturally. It does not knock politely. It climbs into bed with you, starts rattling your nervous system and whispers, “Remember tomorrow? Let’s make that worse.”

Just as I was trying to sleep, my throat began spasming. Every few minutes. For about an hour. Nothing says restful bedtime quite like feeling your body has decided to audition for a low-budget horror film.

Eventually I took a Lorazepam because the brain was doing its usual hamster-on-a-wheel routine. Still woke up around four or five in the morning, in pain, with the day ahead already stomping about in my head wearing steel-capped boots.

Then, because life enjoys an encore, we found the van had a puncture.

Of course it did.

Pump up the tyre, get in the van, head into the city in Sunday rain. I had hoped to see the grandchildren afterwards, but they all had colds, so that plan got knocked firmly on the head. Probably for the best. Passing germs around is not really the family pastime anyone needs.

Travelling with MS is not simply “getting in a car.” It is an expedition. Even when you are not driving, it drains you. When you are driving, and cannot take your usual medication because you need to be safe behind the wheel, it becomes a special kind of rubbish.

From roughly seven in the morning until about three in the afternoon: medication-free. Brilliant. My nervous system was no doubt thrilled.

There have been plenty of times I have thought about handing in my licence. Saying enough is enough. But at the moment, I cannot. So I carry on. That is often the reality of disability: not heroic nonsense, not inspirational poster material — just doing the difficult thing because the alternatives are worse.

White coat syndrome did not appear from thin air

Mine goes back decades.

As a kid in the 1960s, I was taken to a dentist who seemed to have been built in the Victorian era and left in storage since 1700. Cobwebs, grim mood, no patience, and drills that looked like they belonged on a building site.

You did not get soothing words. You got pushed through the door, sat in the chair and told to shut up. My mother did not understand the terror, and neither did the dentist. That feeling sticks with you. Your body remembers even when your brain thinks it has moved on.

Oddly, MS has removed my dentist anxiety now, partly because my mouth is numb and fillings often do not hurt. Every cloud and all that.

The downside is biting chunks out of your tongue, dribbling when drinking and trying to eat with a mouth that has the sensitivity of an old sofa cushion. It is not glamorous. MS rarely is.

The MRI experience:

surprisingly decent staff, deeply unpleasant tube

The journey in was not too bad until we hit the city. Then it became chock-a-block, because apparently everyone else had chosen the same rainy Sunday to clog up the roads.

I took a wrong turn, got confused and added another twenty minutes. We arrived about half an hour early, and — shockingly — I was seen fifteen minutes early. The staff were kind and seemed to know what they were doing.

On the form, I wrote: “I have white coat syndrome.”

They asked what it was.

I laughed.

I also explained that confined spaces are not my idea of a good time. They gave me that familiar look: half reassurance, half “we have heard this before.” Then came the MRI.

About halfway through, I started feeling sick. My nerves were spasming all over. The face mask was making my breathing feel worse, and with the throat-strangling sensation I already get, being strapped into a metal machine with my head held in place was not exactly a spa afternoon.

They stopped the scan briefly and took the mask off. Thank God for that.

I was in there for somewhere between half an hour and three quarters of an hour. Not the worst thing I have ever endured, but nobody should pretend it is pleasant when your body is already on high alert.

People sometimes wonder why medical appointments can knock someone with MS sideways for days.

There it is.

The travel. The disrupted medication. The pain. The anxiety. The sensory overload. The waiting. The physical effort. The fear. The concentration. The fact that you have to keep performing “coping” while your body is quietly filing a formal complaint.

And then people say, “But it was only an appointment.”

Yes. Only an appointment. Like climbing Everest is only a walk.

Home, exhausted, and waiting

The trip home was fairly pleasant apart from the usual road warriors in their giant fast cars, overtaking because apparently arriving thirty seconds sooner is a sacred mission.

I got home less stressed, absolutely shattered, and ready to take my medication, eat dinner and collapse into bed.

I am glad hospitals are able to offer MRI appointments on a Sunday. Honestly, more services should be available around the clock. Illness does not close for weekends, bank holidays or staff rota convenience. Bodies have appalling manners like that.

I do not know what the MRI will show. I know how I feel, I know I have been getting worse, and I know I have spent years telling people what has been happening to me. The wait for answers is its own kind of torture.

For years, I was left trying to make sense of symptoms that were written off, missed or simply unexplained. The MS hug. The pain. The breathing and throat symptoms. The sheer madness of trying to explain what is happening inside a body that no longer follows the rules.

Too often, people with MS are sent off to navigate a minefield with a leaflet and a polite smile.

That is not good enough.

Anyway. MRI done. Rain survived. Tyre pumped up. Nervous system thoroughly offended.

Now for a long afternoon in bed, medication, food and the hope that tomorrow is less of a circus.

Peace, healing, love and light to everyone still battling their own ridiculous body, their own hospital maze, or their own Sunday from hell.

Keep your stress down where you can. Smile if you feel like it.

And stay safe, stay well.

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.)

Tumblr is @livingwithmsblog twitter@livingwithms 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ This Blog is a space for honest conversations about my personal experiences with MS, mental health, and the weird paranormal, liminal, and everything in between. I’m not a doctor, therapist, or expert in the unexplained; I’m just someone sharing my story and offering solidarity. If you’re struggling, please reach out to a trusted friend, support group, or professional. And if the weird stuff sparks your curiosity, remember: stay open-minded, but always prioritise your well-being.⚠️

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

Well, It’s the Weekend. Apparently.

Well, it’s the weekend, apparently. So I hope everyone out there in Blog land or, more accurately, My Living Hell land is having an absolutely marvellous one.

Here it is dark, cold, wet and thoroughly miserable. Proper British weather: the sort that makes you wonder whether the sky has simply given up and started leaking.

No market for me this Saturday. I doubt I’ll even be going out. Autumn has arrived, winter is looming behind it like an unpaid bill, and it is time to start wrapping up again. Joy. Another season of layers, damp socks and pretending the weather is “quite fresh”.

This week has been fraught. Stress attacks, setbacks, pressure, crossed wires, people not listening properly the usual human circus, only with less popcorn and more exhaustion.

I think I am slowly crawling back towards a strange kind of non-normal normal. If you live with progressive MS, you may understand that one. “Normal” is often just the bit between one problem and the next problem arriving with a clipboard.

My head has not been in a good place. I have felt pressured and aggravated, mostly because people seem to hear words but not actually listen to what is being said. That creates misunderstandings, then more problems, then suddenly everybody is wandering around holding the wrong end of the stick and wondering why the room smells of smoke.

I have always done things off the cuff. I shoot from the hip. I do not enjoy being forced into scripts, boxes or somebody else’s carefully organised system for explaining who I am. I have been doing my own thing for years.

And yes, I use AI sometimes, like most people now. But I do not want every human conversation shoved through a machine and turned into a polished beige corporate paragraph. Sometimes that is exactly where the meaning gets lost. AI can tidy grammar, but it cannot always understand tone, history, frustration, humour, illness, personality or the thousand invisible things behind a sentence.

That is why the podcast will be as it happens.

No fake polish. No cutting out every cock-up. No pretending I am some perfect media-trained robot in a jumper. It will be real: a bloke with progressive MS, a camera, a microphone, a brain that does not always play by the rules, and probably several moments where technology behaves like it has joined the opposition.

Over winter, I hope to talk honestly about life with MS not just the symptoms people can see, but what it does to your thinking, memory, confidence, communication and sense of self. MS does not just mess with your legs. It can get into your head, your planning, your energy, your patience, and your ability to feel like the same person you once were.

I also want to talk about the stranger side of my life: the patterns I notice, the experiences I have had, spirituality, paranormal questions, UFOs, ghosts, consciousness and the things that do not fit neatly into a medical leaflet.

I am not here to force my beliefs onto anyone. I am sharing my experiences and asking questions, as I have done for decades. People are free to think I am eccentric, mistaken, fascinating, completely bonkers or all four before lunch. That is their right.

What I do know is that dismissing someone’s lived experience without listening is not good enough either. I am still asking questions. I am still looking for answers. And I am still very much here.

On Sunday, I have an MRI scan.

I hate MRI scans.

The noise, the enclosure, the waiting, the white-coat anxiety—the whole thing is a nightmare wrapped in hospital lighting. People say, “It’s only an MRI, don’t worry.” Brilliant. Thank you. I will now simply switch off decades of medical stress and trauma because someone said “don’t worry” in a reassuring voice.

Of course I know the staff are doing their jobs, and most are kind people. It is not about them personally. It is about what hospitals represent after years of appointments, explanations, tests, disbelief, stress and being made to feel as though you are somehow inconvenient for being ill.

The one possible advantage of an MRI on a Sunday is parking. In theory. At the main hospital, you need to leave about an hour and a half early just to stand a fighting chance of finding a space. When you are in a wheelchair and have to find the right department afterwards, it stops being a hospital visit and becomes a low-budget endurance challenge.

Meanwhile, the four-wheel scooter of death has been looked at.

The repair man said it feels badly underpowered and asked whether it really has the motor it is supposed to have. That was comforting. Nothing says confidence quite like the bloke fixing it looking mildly horrified.

There may also have been a battery connection issue from the start. Excellent. So perhaps I have bought a mobility scooter that has the pulling power of a damp lettuce.

This week, Albertine and I will test it properly. She will be on the three-wheel scooter of death, and I will be on the four-wheel scooter of no hope. If it is still performing like a reluctant shopping trolley, then we will have to push the company for proper answers. Their response time so far has been suspiciously slow. Funny how urgency evaporates once they have your money.

On the positive side, the podcast setup is ready. Microphone, camera, sound, studio—the lot. I will be recording the first episode in the next few days and hosting it myself.

So yes, soon you will be able to see me and hear me, which may be too much reality for some people. But there we are.

This is not just going to be a podcast about MS. It will be about everything that comes with it: the absurdity, the fear, the humour, the brain fog, the anger, the spiritual questions, the weirdness, the loneliness, the love, and the bloody determination to remain myself in the middle of it all.

Whatever you believe, wherever you are, and however strange your own corner of reality may feel today, I wish you peace, healing, love and light.

Have a decent weekend if you can.

And if you cannot, at least try not to buy a scooter with the acceleration of a dead snail.

Peace and love.

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 ☣

Tumblr is @livingwithmsblog twitter@livingwithms 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.⚠️

I used no AI as it was being a real pain and kept sanitising and telling me off lol so may be confusing read

grief ms and loss of family and friends

So a very good morning to everybody out there , Well today I'm going to try and tackle a subject which many of us have experienced. It's about when we're told we have MS and some of the consequences that can happen afterwards. And sometimes it can leave us wondering what the fucking hell is going on. It is an absolute mine field of emotion and events that sometimes you wouldn't imagine even possible.

The Drs office

I was sat in the doctor's office. I already knew that I had MS I'd known for a very long time that I'd had MS and we just sat down and He said have you seen the neurologist yet? going next week I said to him, and he sort of looked at me, and then he just said, "I'm ever so sorry, warlock, you've got multiple sclerosis." I looked at him and I sort of smiled and it hit me not at that point actually. It was at the actual point when I got home and I sat down and I realised that I now had a name for what had been going on with me since I was a young boy.

ignored not listened to

all those symptoms I was going through all those years that nobody would listen. And even if I went to a doctor they would ignore me and they would say it was something totally different. So yes, there I was, sat in my chair and it just suddenly hit me. And it was like being hit on the head with a hammer. And I did get some relief thinking, well at least I know what it is now. Yeah, but I felt really sad because I knew that it was progressive and I knew it was going to get worse. But I sort of felt a bit strange for a couple of weeks and then I pulled myself together.

in the early days

The thing is I remember back in the early, well, late 60s, early 70s. That's when my symptoms all started slowly, slowly, slowly, and they've been progressively slow since that time as a young lad probably pre teen. They speed it up a bit more and a bit more, and where I am today, 67 with progressive MS, and I don't take the medication. And I take no part in any trials of any medications or anything out there.

marijuana and THC CBD oil

I use totally natural alternatives. I have found over the years that marijuana and THC CBD oil really, really works well for me. And I've been smoking it and taking it for so many years now. It no longer gets me high and gives me that side effect that you used to get when you first started taking it. So yes, when people say, "Oh, as soon as you have it, you have weed." No, you don't. It just helped your body cope with the day ahead. It doesn't make you happy in jumping up and down and laughing and we and all that sort of rubbish. No, it helps with the pain, it helps with the spasms, it helps with the constant head fucks that you go through.

MS life changing

As ever, I have strayed far from the point. My point is getting MS changes your life totally. You're either going to be negative or you're going to be positive about your diagnosis. I was negative for a little while and I must admit my life did fall apart for a little while. But when I pulled myself together and I'd realised that I'd been living with it for over 40 odd years at this point, I thought, "Well, I'll just carry on going with it." So yes, I went down the doctor route of taking all their medications, Gabapentin and all those sorts of pain pills and I was injecting with Capaxone every day and I was on a shitload of medication. And then one day things changed for me.

spiritual changes a vision and a voice

I was lying in bed and I had some sort of weird spiritual intervention. I was feeling really ill in fact I hadn't felt so unwell in years. What I hadn't realised was all the medications that I were taking, all their side effects were really fucking me up. And you know, not being able to go for a poo, you know, and all that sort of stuff is not very pleasant. And the pain and everything. So yeah, getting back to where I was, I had this visitation, a spiritual visitation from somebody called Seraphs Bay. And he told me to stop feeling sorry for myself. And you know, it's time for me to really get my shit together.

Drs and hospitals

So I did and I stopped taking all the MS medications and weirdly I told my neurologist and he said look we need to get you into hospital for two weeks to get you all for your medication. And I said no so I did cold turkey at home and I do not regret it honestly. Those days of suffering of just sitting there in a chair not knowing even what day it was everything became clearer. I came off every single med and my God things changed for the better for me. I now had more cognitive headspace etc. So that was about probably 20 odd years ago I think 25 years ago when I came off all those meds. I'd spent probably a few years on the medications but you know they made me actually worse not better which is weird. But like the doctor said you're that sort of person that if there's a side effect written on the box you're going to get it. So there we go.

my life changed again for the better

So the fact is people, when I got diagnosed with MS, I did change my life around. I went to university and I got myself a load of bits of paper saying I can do all these weird things. So that in itself was completely amazing. MS has turned me into a very positive person. It changed my life for the better strangely, but it's been a beast. It really has been a beast. Sometimes I hate myself. Sometimes I don't, but MS is the beast. Once you've got it, it's a real bastard to fight sometimes. And it takes every last ounce of energy some days to just even think.

loosing friends and family sad thing

But the next thing I was going to talk about is you've got your diagnosis and then your friends find out that you have MS and slowly but surely over the years all my friends have gone Vanished because I have this illness multiple sclerosis so you lose all your friends and then you start losing members of your family Who find it a bit difficult to even look at you? You know my mother I didn't speak to her for what ten years. I didn't go to her funeral

adopted and really screwed up

You know that MS caused all sorts of issues with my mother's well with my mother's because I was adopted and Also my brothers sisters half brothers half sisters, etc Nobody wanted to know me because I had multiple sclerosis So there I am with Albertine my son my daughter and a few other members of the family Albertine's parents and Yes, they're about the only people who stood by me throughout all these years without ever wavering and Yes That is what I mean friends don't come very easily, but when you do get a friend They will be good friends because if they can understand what you're going through You've got a good one there. I can tell you But from what I found, only people with MS or a chronic illness can understand what you're going through and understand mentally, physically how it actually works.

understanding

A lot of other people just do not understand and they think that we're putting all this crap on. Well, no we're not. Try living 10 minutes in my shoes and see how you feel. See how you feel after debilitating days of pain, spasms, mind fucks, yeah, you just wouldn't understand and people out there need to realise we are human and we have feelings as well. Yet people just shove us aside. Like me when you're in a wheelchair, people just seem to talk to the person you're with. Even in the doctor's surgery with the doctor are not me, which I find totally fucking perverse. You know, and it's not fun having MS and it's not fun being disabled full stop. You get treated totally different. You get treated like you're a fucking pariah in society and it's just not fair. Well, my brain fog has now kicked in and I have done a bit too much thinking, so I must finish this here.

So I send everybody peace healing, love and light, and maybe one day I'll be able to go deeper into the subject. I thought I would be able to this morning, but I just can't cope with it with my head. So take care everybody.

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

A very good afternoon to you, whoever you are, wherever you’re from—whether it’s Mars, ancient Tartaria, or just your local pub. I hope your weekend is less chaotic than mine.

The Finger That Came Back (And Other Small Miracles)

Albertine’s finger, which was dramatically removed and then just as dramatically returned by the NHS, is now looking remarkably good like it never left at all. A true medical miracle! We’re down one person in the household due to this ordeal, meaning I’m now single-handedly responsible for keeping everything from collapsing into chaos a task that requires both Herculean effort and a healthy dose of dark humour.

The 4-Wheel Scooter of Death (Still in the Garage, Thankfully)

My new mobility scooter dubbed the 4-wheel scooter of death remains safely locked away in the garage. I refuse to unleash it upon the world after its near-fatal roundabout incident.

Accelerates like a runaway train Cuts out at crucial moments (like, say, when you’re about to get hit by a bus) Jerked me home with no power, leaving me questioning my life choices I’ve sent at least three emails (possibly five) to the company that sold it to me, and not a single response. This suggests either:

They’re aware of the design flaws but don’t care. My emails are being filtered out as spam (which, given their quality, is entirely plausible). They’ve already written my obituary. Either way, I’m now forced to use the 3-wheel trolley of death—a device that last year attempted to throw me under a bus. Cheap scooters: not fit for purpose.

The UK’s Mobility Scooter Problem (Or: Why Can’t We Have Electric Cars That Actually Work?)

I remember the old blue mobility cars reliable, sturdy, and built to last. Now? We get these flimsy, half-baked electric scooters that are basically death traps.

Why can’t we have small, fast, reliable electric vehicles? They exist in China! Why not here?

The government is pushing us toward electric everything except for the things disabled people actually need. Where’s my 30-40 mph electric car? I don’t care if it runs on petrol, diesel, or even bullshit—just give me something that doesn’t try to kill me.

The Electrical Storm in My Brain (Or: Why I Look Like a Mad Scientist)

I was supposed to go to the market today, but I’m not feeling well. Brain fog, stress, and that weird electrical storm sensation the kind of feeling you can’t describe unless you’ve experienced it yourself.

Looking in the mirror at 67, with my hair falling out faster than a bald eagle in a hurricane, I find it amusing (in a deeply cynical way). Life’s choices, eh?

A New Project: The MS Podcast (Or: Why We Need More Dark Humour)

I’ve been asked to help with a podcast about multiple sclerosis a place where people can ask questions and hear from those of us living this neurological adventure first-hand. Dark humour is the only thing keeping me going.

My brain feels like a bowl of mush being stirred by a spoon, and my mental faculties are… questionable. But hey, at least I have something to write about.

What Would an Borg Think of This?)

An Borg, observing this post, might conclude:

"Subject exhibits signs of neurological dysfunction coupled with an apparent fascination for mobility devices that actively attempt to injure them. Recommendation: Observe from a safe distance." "Human humour is inefficient but effective. Sarcasm detected at 98%. Probability of dark comedy success: 100%."

Final Thoughts (Or: Why I’m Still Here)

I send all readers whether you’re human, interdimensional, or from ancient Tataria peace, healing, love, and light (even if it’s refracted through layers of sarcasm).

If you are from another dimension, drop me a line. A neurologically challenged man like myself would love to hear your perspective.

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

"The Different Types of MS: Relapsing-Remitting, Primary Progressive, and More"

(Or, "How to Lose at Life While Losing Your Nervous System")

Introduction: Welcome to the MS Lottery

Congratulations! You’ve just won a lifetime supply of neurological chaos, served with a side of uncertainty. Multiple sclerosis (MS) isn’t one-size-fits-all—it’s more like a choose-your-own-adventure book where every path leads to "I hope this isn’t me."

Whether you’re here because you’ve just been diagnosed, you know someone who has it, or you’re just morbidly curious about how the brain can betray you, this is your no-BS guide to the different types of MS. Spoiler alert: None of them are fun.

1. Relapsing-Remitting MS (RRMS)

The "On Again, Off Again" Special (Affects ~85% of people at diagnosis—lucky you!)

What It Is:

You get symptom flare-ups (relapses) that come out of nowhere, followed by periods where you pretend nothing happened (remissions). It’s like your brain is playing a game of "Hot Potato: Nervous System Edition."

Key Features

✔ Relapses: New or worsening symptoms (numbness, vision problems, fatigue—classic MS moves).

✔ Remissions: Symptoms improve partially or completely. Congrats! You’re back to normal… for now.

✔ Early symptoms: Optic neuritis (your eye decides to go rogue), tingling in your limbs, balance issues.

Progression Over Time:

Some people stay stable for years (lucky bastards). Others transition to Secondary Progressive MS (SPMS), where things start getting less fun. Visual Idea: A graph showing relapse-remission cycles with the caption "Your brain’s way of saying ‘I’m still here, but barely.’"

2. Secondary Progressive MS (SPMS)

The "Slow Burn" Edition (Affects ~69% of PwMS within 25 years—because why not?)

What It Is:

You start as RRMS, but then your brain decides "Screw it, I’m doing this the hard way." Symptoms worsen steadily, and remissions become a distant memory.

Key Features:

✔ No more full recoveries. Relapses might still happen, but they don’t go away.

✔ Symptoms accumulate like a debt you can’t pay off.

✔ Common later-stage symptoms: Mobility issues (walking becomes a metaphorical and literal challenge), cognitive decline, bladder/bowel problems.

"From ‘I can still walk’ to ‘Please help me.’"

3. Primary Progressive MS (PPMS)

The "No Breaks, Just Suffering" Track (Affects ~10–15% of PwMS—because variety is the spice of life.)

What It Is:

You get progressive disability from the start, with no relapses or remissions. It’s like your brain is on a one-way ticket to "I can’t do that anymore."

Key Features:

✔ No early relapses—just steady decline.

✔ Common symptoms: Spasticity (your muscles decide they hate you), fatigue (because why not?), cognitive changes.

✔ Slower progression than SPMS, but still a slow-motion disaster.

4. Clinically Isolated Syndrome (CIS)

The "Maybe It’s MS, Maybe Not" Phase (Early-stage MS or a one-time episode—because life loves uncertainty.)

What It Is:

You have one neurological symptom that could be MS but isn’t yet confirmed. It’s like your brain is flirting with the idea of betraying you.

Key Features:

✔ Single relapse, no prior MS diagnosis.

✔ MRI may show lesions (plaques) in your brain or spinal cord.

5. Radiologically Isolated Syndrome (RIS)

The "My Brain Has Lesions, But I’m Fine" Phase (Preclinical MS—because why not start early?)

What It Is:

You have MS-like lesions on MRI but no symptoms yet. It’s like your brain is quietly sabotaging itself behind the scenes.

Key Features:

✔ No neurological symptoms (yet).

✔ Monitored closely for progression.

6. Other Rare Forms Because MS Loves Variety

Relapsing-Progressive MS (RPMS): Relapses + steady worsening (the worst of both worlds). Progressive-Relapsing MS (PRMS): Rare, but if you get this, congrats, you’re a unicorn. How Is MS Diagnosed? (Spoiler: It’s a Pain) (Briefly cover diagnostic criteria—McDonald’s Criteria, MRI, spinal fluid tests, etc.)

What Does This Mean for Treatment?

(Spoiler: It’s a Work in Progress)

RRMS & SPMS: Often treated with disease-modifying therapies (DMTs)—because why not try to slow things down? PPMS: Some DMTs are approved specifically for PPMS (hope springs eternal). CIS/RIS: Monitored closely, but some may start treatment early if they’re high-risk. Visual Idea: A table comparing treatment options with the caption "Your brain’s ‘I’ll try to behave’ phase."

Living with Different Types of MS

(Or, "How to Not Lose Your Mind")

For RRMS: Manage relapses (steroids are your friend). Track symptoms between flare-ups (because denial is a river in Egypt). For PPMS/SPMS: Adaptive strategies for mobility/cognition (because walking is overrated). Emotional support (because losing your ability to walk is hard). "I used to walk, now I’m a human wheelchair—thanks, MS."

Key Takeaways

(Or, "Things You’ll Learn the Hard Way")

MS isn’t one-size-fits-all—it’s more like a buffet of suffering. Early diagnosis is crucial, even if you’re asymptomatic (yet). Treatment options vary, so work closely with your neurologist (or cry into their shoulder). Support groups and advocacy can help you navigate this mess.

Final Thought:

Dark Humour is a Coping Mechanism MS is a real, debilitating condition, but laughing about it helps. Whether you’re dealing with relapses, progressive disability, or just the daily grind of living with a chronic illness, you’re not alone.

peace healing love and light to all the readers of this blog

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 ☣

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