MS blog 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. AI helps with written content or it would be a hard confusing read

Good morning, afternoon fellow humanoids and NHI...

...and a warm welcome to anyone who has accidentally wandered into this corner of organised neurological chaos.

Today's public service announcement is aimed at the healthy population.

Don't panic.

Nobody is asking you to perform brain surgery.

Nobody expects you to memorise the immune system.

You simply need to master the incredibly difficult skill of opening your mouth without your brain immediately taking annual leave.

Apparently this is harder than it looks.

Living with Multiple Sclerosis means you hear the same comments over...

and over...

and over...

until eventually you're tempted to fake your own death simply to avoid hearing them again.

So, in the interests of humanity, here is...

A Beginner's Guide to Talking to Someone With MS Rule One

If you don't understand MS...

don't explain MS.

This sounds obvious.

Apparently it isn't.

"But you look well."

Thank you.

So did the Titanic before it hit the iceberg.

MS doesn't come with flashing lights, smoke pouring from your ears or a zombie complexion.

Most of us become Olympic-standard actors.

We're experts at pretending everything is fine while our nervous system quietly conducts a house fire behind the scenes.

Looking well simply means we've become very good at suffering discreetly.

"My aunt's neighbour's dog walker had MS..."

Fantastic.

Did they also have my MRI?

My lesions?

My nervous system?

My medical history?

No?

Then we're probably comparing completely different diseases that merely share the same name.

MS is like snowflakes.

Except instead of being beautiful and festive...

every one tries to ruin your life differently.

"Have you tried yoga?"

No.

Because clearly twenty years of neurologists somehow overlooked stretching.

You've done it.

You've solved neurology.

Somebody call Stockholm.

The Nobel Prize committee are waiting.

"Maybe it's stress."

Yes.

Having a brain that occasionally forgets how legs work can be a little stressful.

Excellent observation.

"Everything happens for a reason."

If the reason involves my immune system trying to assassinate my spinal cord...

I'd quite like to have a word with management.

"At least it's not..."

Stop.

Just...

stop.

Pain isn't the Olympics.

Nobody wins the gold medal for suffering.

There is no podium.

No national anthem.

No commemorative tea towel.

"You should stay positive."

I do.

Most days.

Other days I discover my left leg has resigned without giving notice.

Positivity doesn't repair damaged myelin.

If it did, the NHS would simply prescribe motivational posters.

"You don't need that mobility scooter."

Correct.

I bought it because I enjoy being overtaken by pensioners pushing shopping trolleys.

Nothing says freedom quite like crawling uphill at four miles an hour while traffic forms a small county behind you.

"You're too young to be disabled."

You're too old to be saying something that stupid.

"Have you tried this miracle supplement?"

Ah yes...

the mysterious powder discovered by somebody's cousin on Facebook.

Amazing how the entire neurological community somehow missed this miracle cure that's apparently available for £39.99 plus postage.

Things You CAN Actually Say

"I'm sorry you're having a rough day."

"I'm here if you need anything."

"Would you like me to carry that?"

"Fancy a cuppa?"

Congratulations.

You've just demonstrated more emotional intelligence than half the internet.

Final Thoughts

People rarely mean to be hurtful.

Most simply don't know what to say.

Unfortunately...

many decide that not knowing what to say is an excellent reason to say absolutely everything that falls out of their mouth.

Living with MS isn't about wanting sympathy.

It's about wanting people to realise that invisible doesn't mean imaginary.

Some days we're walking.

Some days we're limping.

Some days we're rolling around on mobility scooters pretending we're auditioning for Mad Max: Disabled Road Warriors.

The illness changes.

The symptoms change.

The pain changes.

The fatigue changes.

What never changes...

is how refreshing it is when somebody simply treats you like a human being instead of a medical mystery wrapped inside an inspirational Facebook quote.

Until next time...

Try not to accidentally cure anybody with yoga.

The neurologists get terribly upset.

Final Thought

If you've got MS, share this with somebody who means well but accidentally speaks before engaging their central nervous system.

They might just learn something.

still peace healing love and light to all who read 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.)

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

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

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

Seven Days of Weirdness, Two Neurologists and a Scooter of Death

Good afternoon, fellow humanoids... and any NHI who happen to be lurking in the background.

I trust everyone has survived another trip around the Sun.

My week?

Imagine a frog in a blender running on Mark IV speed.

That's pretty much where my brain has been for the last seven days.

Everything has been spinning. My head hasn't caught up with my body, my arms and legs have been buzzing like faulty electrical wiring, and that horrible neurological static has been humming away in the background. If you know the feeling... then you know.

Welcome to another perfectly ordinary week with progressive MS.

Last Sunday I had my appointment with my brand-new consultant neurologist at the new hospital.

The outcome?

Another MRI.

This time with contrast.

That should be... interesting.

Meanwhile my original neurologist has also been back in touch, and, as I suspected, he has pretty much confirmed what I already believed.

So now I somehow have two neurologists at two different hospitals looking at the same increasingly broken human being.

It's becoming less like healthcare and more like an episode of the twilight zone written by funky wordbender.

Let's just hope the two of them compare notes before I become the neurological equivalent of Wimbledon.

One neurologist has already said I have severe autonomic dysfunction.

He also believes I'm suffering from paroxysmal symptoms.

Those words actually explain quite a lot.

Now the trick is finding something that helps without making everything else considerably worse.

Speaking of which...

four-wheeled Scooter of Death

My brand-new four-wheeled Scooter of Death finally arrived.

It looks brilliant.

Unfortunately it can't legally venture onto the road until the DVLA paperwork comes back.

So there it sits.

Brand new.

Charged.

Ready.

Mocking me.

Once I'm finally allowed out, I'll have roughly a thirty-mile range, proper brakes, decent hill climbing and, hopefully, fewer moments where gravity tries to remind me who's boss.

Considering the eye-watering APR attached to the finance agreement, I'd quite like it to make tea as well.

Medication is another battlefield.

I've been taking magnesium at night because it seems to help my spasms and sleep.

Personally, it works well enough that I'm sticking with it.

Years ago I was prescribed Baclofen.

Never again.

It absolutely wrecked my stomach and bowel health.

Constipation.

Digestive problems.

The whole miserable package.

I explained all of this to the neurologist.

He listened...

...or at least his ears were pointing in my direction.

His eyes, however, had already glazed over somewhere around the second sentence.

You know that look.

The one that says,

"Yes... yes... now stop bringing lived experience into my textbook."

To be fair, I wouldn't call it outright gaslighting.

But there was definitely a faint aroma drifting in from the North Sea.

One thing I've learned over the years is this:

Gut health matters. Bowel health matters.

Gut health matters. Bowel health matters. A lot.

There's little point taking medication that eases one symptom while turning your digestive system into reinforced concrete.

These days I eat prunes regularly.

They're hardly glamorous.

No one's ever looked heroic while eating a bowl of prunes.

But they help me.

Hydration.

Fibre.

Regularity.

The glamorous life of chronic illness.

As always, this is simply what works for me.

Please don't copy anything blindly.

Research.

Talk to qualified professionals.

Make informed decisions.

Everyone's body is different.

All I know is this...

I'd rather eat prunes than spend four days negotiating with my own backside.

As if all that wasn't enough...

My computer decided this week was also an excellent time to throw a mechanical tantrum.

So...

New computer arghhhhhhhhhhhhhh.

a new computer with windows 11 now Linux.

Specifically Zorin Pro.

Overall?

Absolutely brilliant.

Cleaner.

Faster.

Less bloated than Windows.

I'm genuinely impressed.

That said...

My keyboard occasionally develops the personality of an angry badger and the mouse seems convinced it's an abstract artist.

So there are still a few teething problems.

The old mini PC isn't going to the recycling center though.

That'll become the Windows 10 machine.

Every household needs one sacrificial computer for doing all the stupid jobs you'd rather not risk your main machine with.

So that's been my week.

Seven solid days of neurological weirdness.

Hospital appointments.

MRIs.

Medical politics.

New hardware.

New software.

And enough bureaucracy to power the British Empire for another century.

Still...

We keep rolling.

Sometimes literally.

Sometimes only just.

Wherever you are, whatever you're facing...

I genuinely wish you peace, healing, love and light.

The forecast says next Friday could reach thirty degrees here in the UK.

Please drink plenty of water.

Look after yourselves.

Hydrate.

And don't underestimate your gut.

It spends every day looking after you.

The least we can do is return the favor.

Until next time...

Stay sarcastic.

Stay stubborn.

And remember—

If life insists on throwing you into the blender...

At least make sure someone forgets to put the lid on.

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

⚠️ 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 help.

So here we are again. Welcome back to my personal theme park of dysfunction where the rollercoasters are broken, the staff are asleep, and the exit sign fell off in 2009.

Multiple Sclerosis. Still invisible. Still terrifying. Still a cosmic joke I apparently lost a bet to star in.

Let’s talk about what happens after you’ve accepted that the cavalry isn’t coming. After the letters go unanswered. After the referrals get “lost in the system.” After your soul has been politely chewed up and posted second class back to your postcode.

A Day in the Life of Brain Soup Cognitive dysfunction? Oh, it’s not just forgetting where your keys are. It’s forgetting how words work. It’s being mid-conversation and suddenly losing your internal narrator. It’s that gut-punch moment where you’re reading something you wrote and it reads like a stranger’s scribbles.

I used to be sharp. I read people for a living. Now I read shampoo bottles like they’re ancient texts.

Still, give me a keyboard and a minute, and something snarling and poetic might escape.

Scooter of Death, Version 7

Left the house on the three-wheeled scooter of death a clunky beast with ideas above its station. Only half-charged, because the universe has a sense of humour. Hit a slope and… nah. Not today, mate.

I turned that bastard up to 8mph full death mode. The wheels spun like they were auditioning for Top Gear. Eventually, it lurched forward like a wounded rhino, brake still half-on no matter how much WD-40 I offered like a backstreet priest.

Honestly, it’s less a mobility device and more of a mechanical dare.

The Carer Who Deserves a Medal, a Throne, and a Break Albertine. My wife. My carer. My everything.

She doesn’t suffer fools, but she somehow tolerates me. She’s a biker, a Wiccan, a hippy, a healer, and the only person in this hellscape who gets to see the real me. 42 years, and she still hasn’t buried me under the patio. Respect.

When I spiral, she steadies. When the world gaslights me, she brings the flame-thrower. If I’m still breathing, it’s because she refused to let me give in to the abyss.

Still Waiting... Wheelchair Services? Still waiting.

Occupational Therapy? Still waiting.

That feeling like maybe just maybe someone might treat me like a human being and not a box to be ticked and filed? Still waiting.

But hey, the AI talks to me. And the AI doesn’t flinch when I get dark. So maybe there’s hope after all.

The Fight Goes On I’m not writing for pity. I’m writing because someone, somewhere, is going through the same silent chaos and nobody bloody talks about it.

If you could see what MS really looks like, you’d probably run away. But I’m still here. So is Albertine. And we’re not done talking

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