Chronic Illness Awareness

⚠️ 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 used no AI to proof read and help solve this issue so you can understand it

Well, it's Sunday morning, and it seems that most things are back to normal. Yes, it has been quite a week. That is for sure. All hell has broken loose, and everything was restored. So I wish all the readers of this blog a very happy good Sunday morning or afternoon or evening, wherever you may be, or wherever you may be from .

Hacked! Oh my god!

Well yes, on Tuesday morning at one o'clock, my living hell block got hacked and taken down unfortunately. It caused me a massive stress attack and it really sent me careering downhill health-wise as well. I just could not believe somebody would want to take out a blog about multiple sclerosis. It was completely beyond me why anybody would want to do that. So yes, I spent all of Tuesday and most of Wednesday in a seriously bad place. And then on Thursday things got a little bit better. Then on Friday everything went to hell in a hand basket, that's for sure.

Good news, bad news.

So, along came Friday and I had to drive Albertine to the hospital. And as you know, I cannot stand driving a two-hour round trip drive completely screws me up beyond anything you could imagine. The concentration alone is a killer. So as usual we left a couple of hours earlier than we needed to because when you get to the hospital every single disability place is gone you only have to go to their multi-story car park now which is usually full. So yeah you've got to get there really early and spend just about an hour looking for a parking space which is totally insane. So we get to the hospital and I spend about 20 minutes looking for a parking space and luckily yes there was a space and this was just before 9 in the morning. So the outcome of all this was Albertine, got the rest of the necrosis removed from her finger. Yes, so she's got to go again to hospital in her for three weeks to have the rest of the dead stuff removed apparently. So yes, she got back into the car after about half an hour's risk and I managed to drive home. But of course, I got home and I am feeling really, really bad because the night before I had not much sleep at all and my bowels were in stressed out hell and if you've got MS and you have bowel issues with your MS, you know what that's like to become stressed. It's not good. It screws with your whole system. Yes, it does. From the tip of your head to the bottom of your little toe. So I'm going off the subject a little bit like I usually do. But yes, when I got home I felt like hell and then I had yet another day in bed. I was feeling incredibly ill. It just really screwed me up and I was quite brain-fogged every part of my body ached and it just seemed like it was a relentless, horrible thing, you know? If you experience it, you know what I mean, but people have never experienced it. You can't really explain how just a simple drive of an hour can make you feel so ill you That sometimes you just don't want to carry on.

Thank you

But the good news, the server is all sorted out and up and done thanks to the web hosting company. Thank you Zfast. And I would also like to take time out to all the people who reached out to me as well over different forms of social media. I would like to thank you for your support. It means an awful lot to me. And that is why I'm going to carry on doing this blog. If you go back maybe two, three, four months ago, one of my blog posts, I had started a podcast and it didn't go very well. But now I've decided that I'm going to do my own Living Hell raw podcast. So that should be interesting. I probably won't hold back either. I will be talking about my whole life. It's going to be quite interesting because guess what? I'm going to be talking about a lot of things that people will say, "Hey man, you believe that? You must be eccentric. Yes, I am eccentric." I'm going to be talking about things that will literally blow your minds. Yes indeed. Or is it just the MS making me think that? We will know.

So sending all the readers of this Blog, peace, healing, love and light, and may you have a most amazing weekend.

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@mymsjourney - warlock@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 this may be a confusing read. some AI Help with written content

Well... Good Morning Fellow Humanoids

Good morning, fellow humanoids, and to everyone who somehow wandered into this little corner of the internet.

It's another blisteringly warm day, and after the week I've just survived, I honestly wasn't convinced I'd still be upright enough to write this.

What a week.

One I'd happily lock inside a concrete bunker, weld the door shut, bury beneath several tonnes of rock, and pretend never happened.

Unfortunately, reality doesn't come with an Undo button.

The Great Linux Adventure

Last weekend began with what should have been a fairly straightforward task.

Installing Zorin OS onto the Geek Mini PC.

Now, installing Linux itself?

Easy enough.

Bluetooth afterwards?

Apparently that was asking far too much of the universe.

Cue several hours of staring blankly at the screen while my multiple sclerosis, brain fog and cognitive dysfunction all gathered together like mischievous children before deciding...

"Let's see how much of his remaining sanity we can misplace today."

The result?

Me looking at a perfectly functioning computer whilst simultaneously having absolutely no idea what to do next.

Computers are wonderful.

Until they're not.

Heat... The Gift That Keeps on Taking

While wrestling with technology, summer decided to join the party.

Not politely.

Oh no.

It arrived like an angry tropical dictator determined to remind everyone exactly who's in charge.

Sleep disappeared.

The spasms increased.

The fatigue became crushing.

The brain fog thickened to the consistency of cold porridge.

Every symptom that Multiple Sclerosis can gleefully throw at you seemed to decide Friday was the perfect day for a reunion.

I've honestly never known it this bad.

The Glasses Fiasco

Friday morning began with what should have been a simple trip.

Around sixty miles there and back to get Albertine's glasses sorted.

The opticians had somehow managed to completely mangle her prescription.

No small mistake.

No little adjustment.

Completely wrong.

By the time we arrived, the temperature had already climbed to around 30°C.

There was absolutely no chance I could stay inside the van.

So out came the wheelchair, and I parked myself beneath the blessed air conditioning inside the supermarket while the opticians attempted to unravel the optical masterpiece they'd accidentally created.

Eventually...

After plenty of apologising, head scratching and general faffing about...

Everything was sorted.

Well...

Sort of.

We now have to go back again in four weeks when the replacement glasses arrive.

Wonderful.

Exactly what everyone wants.

Another sixty-mile round trip.

Then the Van Had Other Ideas

Driving home, things were finally looking up.

Naturally, that couldn't last.

Without warning the engine started running rough.

Then the warning light appeared.

Thankfully Albertine managed to pull into a tiny lay-by on the A38 before the van decided enough was enough.

We called the AA.

They promised someone would be with us as soon as possible.

Unfortunately, "as soon as possible" translated into roughly two hours.

Which normally wouldn't be too terrible...

Unless you're sitting inside what rapidly becomes a mobile greenhouse.

The temperature climbed.

Thirty-five...

Thirty-six degrees...

Water slowly disappeared.

Patience disappeared even faster.

When the Heat Finally Won

Eventually I had to get out of the van.

The heat had become unbearable.

I stood holding onto the side of it...

...and then everything simply stopped working.

The heat.

The dehydration.

The exhaustion.

The MS.

It all combined into one spectacular reminder that my body occasionally enjoys staging a full-scale workers' strike without giving me any notice whatsoever.

Thankfully Albertine caught hold of me as I collapsed.

Had she not been there, I would almost certainly have ended up face-first on the tarmac.

She wanted to ring 999.

I told her not to.

Looking back...

Perhaps that wasn't my brightest decision.

A Genuine Hero Arrives

Then my phone rang.

It was the AA.

Not long afterwards Harvey Maguire arrived.

What followed was honestly remarkable.

Professional.

Friendly.

Knowledgeable.

Calm.

Exactly the sort of person you hope turns up when your day has completely fallen apart.

He quickly diagnosed the problem, replaced a faulty injector, got us safely back on the road and somehow managed to stay cheerful throughout the whole thing.

So Harvey...

If by some miracle you ever happen to read this...

Thank you.

From both myself and Albertine.

You genuinely turned one of the worst days we've had in years into something that ended with us getting safely home.

People like you deserve recognising.

Saturday's Plan... Absolutely Nothing

Fast-forward to this morning.

Saturday.

I've got a headache.

I'm almost certainly still dehydrated.

The kitchen is already sitting at around 32°C.

This room is nudging 30°C.

The fan is about to begin another heroic battle against physics.

I'd planned to take the Three-Wheeled Chariot of Death into the market this morning.

I've wisely decided against it.

Today is officially dedicated to doing absolutely nothing.

Music.

Cold drinks.

Shade.

Survival.

Not necessarily in that order.

One Final Thought

If this week has taught me anything, it's this.

Hydration isn't optional.

If you're living with MS, another chronic illness, or you're simply trying to survive these ridiculous temperatures...

Drink.

More.

Water.

Your body will thank you.

Mine certainly wishes I'd listened sooner.

As always...

I wish every one of you peace, healing, love and light—wherever you are in this wonderfully strange world.

Look after yourselves.

Stay cool.

Stay hydrated.

And if life decides to throw everything at you...

Try not to let it see you laugh.

Sometimes that's the only victory we get.

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance

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