🎗️ 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.🎗️

“Brain Fog Hell” is a short, raw song I created while I was going through a particularly brutal period of brain fog. It captures the confusion, frustration and dark humour of trying to get through everyday life when your own brain seems to have gone on strike.

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.🎗️

I’m a power‑chair rider and my first song is all about living with a disability. This song dives into the raw, darkly humorous side of navigating life in a chair my own stories, struggles, and triumphs. Read on for real talk, music vibes, and the truth behind the “Power chair Warrior” name.

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

Oh, it's Thursday afternoon.

So, first of all, greetings and the warmest of welcomes to all you wonderful people who continue to read this blog. Quite frankly, I'm not entirely sure why you do, but I'm grateful nonetheless.

It has been quite a week since last Sunday, when I had my MRI scan at the hospital.

And by quite a week, I mean that I have only just started feeling vaguely human again.

The MRI scan absolutely wasted me.

It laid me down for days and days. Completely and utterly wiped me out.

Some people, apparently, have an MRI and simply carry on with their lives afterwards.

How lovely for them.

Unfortunately, I don't seem to belong to that particular branch of humanity.

For me, the MRI seems to upset all the magnetics in my body in ways that I really don't understand. My body decides that this is an excellent opportunity to go into complete rebellion, and having my head wedged into a machine when I already have a very bad neck isn't exactly my idea of an afternoon at the spa.

By the time the aftermath had finished with me, I was basically waiting for someone to put a DO NOT DISTURB — PATIENT CURRENTLY BEING HELD TOGETHER BY STRING sign on my front door.

But enough of the misery.

There have actually been some positives this week.

The Podcast Has Escaped

I managed to upload my first test podcast!

It's about fourteen minutes long and, if you can find it lurking somewhere on the website, congratulations you've discovered it.

It's very amateur.

Very.

I don't think I'm going to become the next global podcasting sensation overnight, mainly because I don't imagine there is a gigantic queue of people waiting desperately to hear me ramble about things that go bump in the night.

But you never know.

I'm going to be talking about things such as human intelligences, liminal shapes, strange experiences, weird things that have happened to me throughout my life, and all the other delightful material that makes perfectly sensible people slowly edge towards the door.

And that's actually the point.

I'm putting these experiences out there because they're part of my life.

They're a record.

Something for people to find.

And if just one person listens to something I've said and thinks:

"Bloody hell. I know exactly what he's talking about. This has happened to me too."

Then I've helped somebody.

And if that happens, it'll all have been worthwhile.

So, hopefully, My Living Hell will soon have podcasts appearing regularly.

God help us all.

And Apparently I'm Making Music Too

I've also decided I'm going to start putting some of my music up for people to listen to.

It's my own-produced lyric music, and I genuinely hope somebody might actually enjoy it.

A lot of it is connected to disability and my experiences of life, and hopefully some of it might give somebody a bit of power, strength or perhaps simply something to think about.

I've always thought songs can sometimes say things that spoken words struggle to express.

A few carefully chosen words, some music behind them, and suddenly something reaches places that a ten-minute explanation never could.

So there will be music coming as well.

And, thankfully, I don't have to throw everything onto YouTube or some other platform simply because that's apparently what you're supposed to do these days.

This will be staying with My Living Hell.

Myelin Maniacs Is Coming

I've also been busy with Stigsy on the Myelin Maniacs project.

And that should hopefully be going properly live within the next one to two weeks, all being well.

Stigsy is still working feverishly behind the scenes as I write this, getting everything running properly and trying to achieve that mythical state known as:

"A proper job, perfect, as they say."

We're getting there.

With Albertine's tremendous help, we've managed to get the first podcast uploaded, and we'll be getting the music uploaded as well on my living hell.

So things are actually moving.

Which is rather exciting.

Especially after spending half the week feeling like the MRI machine had eaten me and then thoughtfully spat me back out.

Tomorrow: Hospital Adventures, Because Apparently I Don't Have Enough Fun

Tomorrow is another day where I have to drive.

I've stopped taking my lunchtime medication today so that I'll be okay to drive tomorrow.

It's going to be a long drive to the hospital because Albertine has to see the plastic surgeon about her finger, to see how it's healing and all the usual medical adventures that apparently come with having a body.

I don't mind the actual driving.

It's the afterwards I don't particularly enjoy.

You get home, sit down, and then your body suddenly remembers that you've just spent hours using energy you didn't actually have.

That's when the bill arrives.

All the spoons have gone.

The tank is empty.

And the body essentially announces:

"Excellent. That's enough functioning for today. We're shutting down now."

And that's never particularly pleasant.

It doesn't really matter whether you're the driver or the passenger either.

The aftermath can still catch you.

Apparently, sitting in a moving vehicle for several hours is another one of life's thrilling hidden boss battles.

My Four-Wheeled Mobility Scooter of Dread

Meanwhile, my four-wheeled mobility scooter of dread is still stuck in the garage.

I'm finding it increasingly frustrating because I'm losing power going up even the slightest of hills.

We managed to get the major problem sorted out and discovered that the battery was the culprit.

Unfortunately, because life apparently believes that solving one problem should immediately unlock another, we've now got a different problem.

The bloody thing loses power going uphill.

When the guy from the company actually sat on it and took it out for a test, he said:

"What motor have you got in this?"

I immediately knew this wasn't going to be a compliment.

He thought the electric motor seemed seriously underpowered as well.

So we'll see what happens.

At this stage, I'm beginning to suspect my mobility scooter has simply developed an objection to the concept of mobility.

Perhaps it identifies as garden furniture.

Who knows.

Saturday: The Market!

On a much happier note, I'm really looking forward to Saturday because I want to go to the market.

And that would be absolutely brilliant.

Sometimes it's the simple things you look forward to most.

Getting out.

Having a wander around.

Seeing people.

Looking at things you don't need.

Possibly buying things you don't need.

The traditional human experience.

I also want to send my friend Viper peace, healing, love and light, and I really hope he gets over the illness that's currently giving him a good kicking.

I suspect he may have contracted the Deadly Lurgy of Death™.

I could, of course, be completely wrong.

But when Viper misses a show, you know something isn't quite right.

That's when the alarm bells start ringing.

So, Viper, wherever you are, get well soon, mate.

And Finally... Wash Your Bloody Hands

We really do need to be careful out there.

It's that time of year again when the bugs, coughs, colds and assorted microscopic bastards begin wandering around looking for somewhere to live.

So please remember the basics.

Wash your hands.

If you're using a petrol pump, consider wearing gloves.

Shopping trolleys, door handles, petrol pumps and all the other things that hundreds of people touch during the day can be rather delightful little delivery systems for whatever lurgy happens to be doing the rounds.

And nobody needs to spend their weekend becoming intimately acquainted with the toilet.

That's not the kind of weekend entertainment anybody ordered.

So wash your hands.

Use gloves where appropriate.

Be sensible.

It's amazing how much trouble a bit of soap can potentially save you from.

And yes, apparently we still need to remind people about this.

Humanity has reached the moon, developed artificial intelligence and built machines capable of putting magnets around your head...

...and we're still having to say:

"Please wash your bloody hands."

You couldn't make it up.

Until Next Time

Anyway, that's about it for this Thursday afternoon.

Hopefully the weekend will bring better things, including a trip to the market, some progress with the projects, and perhaps a little less time being completely flattened by medical machinery.

I'm wishing everyone out there peace, healing, love and light, no matter who you are, what you are, or where you may be from.

I hope you have a wonderful, exciting and happy weekend.

Take care of yourselves.

And remember:

Wash your hands.

Wear gloves when appropriate.

Avoid unnecessary lurgies.

And if you happen to encounter a mysterious liminal shape while doing your shopping...

Well...

Don't say I didn't warn you.

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 is a test podcast of approximately 10 minutes. It's not really anything, so if you have anything you want to ask me to see, email me at the above address on there. But this is just for test purposes, not really for watching. But if you want to comment, there's my email. Many thanks I aim to be getting one off at his podcast in the next week or so. This is just for test purposes only. So anybody who sees this, sending them peace healing, love and light and hope that they're okay after watching this.

⚠️ 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 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 Autumn Equinox: Nature’s Annual Reminder That Everything Dies

There is something almost offensively smug about the Autumn Equinox.

For one brief moment, day and night are balanced. The universe gets its scales out, checks the figures, and says: “There. Fairness. Enjoy it while it lasts.”

Then the dark starts winning again.

Not with fireworks or a villain’s monologue. Just slowly. Quietly. Earlier sunsets. Colder mornings. The gradual realisation that summer has packed its bags, nicked the good weather, and left us with wet leaves stuck to the sole of life.

For those of us already acquainted with pain, fatigue, grief, illness, or the occasional full-scale collapse of the human operating system, autumn can feel oddly familiar. It does not pretend everything is blooming. It does not insist we “manifest abundance” while our brain is running on two percent battery and a suspicious smell of burnt toast.

It simply says: things change. Things fall. Gather what matters.

And try not to slip on it.

An Ode to the Autumn Equinox

The turning point. The razor’s edge of night and sun,
Where day exhales a breath, and shadows have begun.
No longer summer’s reckless, blazing, careless arc;
But measured light returning from the deepening dark.
We stand upon the balance, poised on perfect ground,
Where equal weight of shadow meets the golden sound.
The Great Equalizer whispers, “Rest now. Slow your pace.”
A time to strip away pretense, and find a truer place.
Oh, season of the harvest, where decay is rich with grace;
Where brittle gold gives way to what cannot erase.
We gather in this quiet—the things we left unsaid,
The haunted ghosts of futures that were merely shed.
You mark the thinning veil, where mystery starts to bloom,
Between the mundane silence and the deep-seated gloom.
A season for the digging: the roots, the pain, the seed,
For all those vital traumas that refused to yield.
Let us embrace the struggle, the fall, the slow decline;
The beautiful disorder of a complex mind.
To honor what was burned out, and welcome what remains—
The messy truth of living through these tangled veins.
So let the quiet come, before the deeper things take hold.
A sacred reckoning of silver and of gold.
We bow to you, Equinox: the breath held taut, the pause;
Where everything that lived must yield to nature’s primal laws.

The equinox is not here to fix us. It is here to remind us that decline is not failure, rest is not laziness, and losing leaves does not mean the tree has given up. Sometimes surviving is not a triumphant march into golden light.

Sometimes it is sitting in the gathering dark, wrapped in something warm, telling the universe to do one and then carrying on anyway. The Autumn Equinox is here equal light, equal dark, and nature once again reminding us that everything falls apart eventually.

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