music

🎗️ 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 ☣

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

I know its Friday..not been so good...late post..

It’s Thursday. Rain hammering the windows like a bastard taxman. Fingers numb, throat strangling me like invisible hands trying to choke the last swear word out of me. Breathing stupid. Feel like puking. MS is a puppeteer with broken strings, and I’m the marionette twitching on the floor.

So I lean on the secret weapon: AI. I smash the keyboard with numb hands, gibberish spills out, and the machine stitches it into sense. Without it, I’d be gone. With it, I’m still here, still ranting, still clawing the page. That’s life now: goblin vs. entropy, assisted by silicon.

Last night: only up once. Bliss. Still woke shattered, like I’d been dragged behind a lorry. Tinnitus is screaming like a rave in a biscuit tin. Al Stewart can’t drown it, Sabbath can. I miss the rides the engines, the crew, adrenaline punching your veins until you felt immortal. Now I get my kicks from antihistamines and nostalgia.

But there’s a dog coming. A rescue beast with eyes like trouble. She’ll chew my slippers and rearrange my world, and I say yes, please. New orbit needed.

People ask: “How do you keep going?” Answer: I don’t. I collapse, I swear, I threaten the universe. Then I get up again because fuck lying down. Music, art, writing, sarcasm. That’s my oxygen. Neuroplasticity? Sure, call it that. I call it stubborn rewiring with duct tape.

And now cannabis. Medical marijuana. Not fairy rings and mushroom cults. Real, legal, prescribed. The plant they jailed people for now comes with a bar code and a receipt. Hypocrisy tastes bitter, but relief tastes better.

Positive points (the blunt edition):

Pain: Cannabis tells nerve pain to piss off. Doesn’t cure, but takes the edge off enough to breathe.

Spasticity: MS muscles seize like rusty hinges. Weed oils ease the vice-grip. Less claw, more unclench.

Sleep: Nights of pacing and madness? Sometimes cannabis knocks you sideways into actual rest. A miracle in itself.

Nausea & appetite: The body wants to puke? Cannabis reroutes you towards a sandwich. Beats wasting away.

Anxiety: Not gone, but softened. Panic becomes background noise instead of a bullhorn.

Is it perfect? No. But compared to Big Pharma’s endless pills and side effects, cannabis feels like sanity. Not a cure, not salvation just a tool that works.

So here I am: Thursday, rain, tinnitus screaming, body trying to strangle itself, AI turning my mess into words, medical marijuana holding the line, Sabbath howling in the background. I feel like a six-year-old with villain energy. I’m weird. I’m wired. And I’m alive.

Not inspirational. Not pretty. Just survival with jokes.

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