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

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

What If Multiple Sclerosis Could Speak?

Giving the Monster a Voice

What If Multiple Sclerosis Could Speak?

Most people think Multiple Sclerosis is a disease.

They're right.

But sometimes it feels like something far more personal.

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

Not everything.

Just enough.

A little balance.

A little vision.

A little memory.

A little confidence.

Tomorrow it might be your strength.

Next week your coordination.

Next month your words.

MS rarely storms through the front door.

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

The cruel part isn't always the pain.

It's the uncertainty.

You never know what the next morning will bring.

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

Other days your body simply shrugs and says,

"Not today."

The Invisible Thief

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

One that never contributes anything useful.

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

It steals memories.

It steals energy.

It steals confidence.

Then it hides behind the words...

"But you look fine."

Invisible illnesses create an impossible contradiction.

People judge what they can see.

MS does most of its damage where nobody can.

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

So I Asked Myself...

What if MS had a voice?

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

An actual voice.

What would it say?

Would it boast?

Would it laugh?

Would it whisper?

Would it manipulate?

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

MS behaves almost like a psychological villain.

It doesn't usually attack all at once.

It chips away.

Slowly.

Patiently.

Methodically.

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

Not to glorify the disease.

But to expose it.

To drag it into the light.

To make the invisible visible.

Why Music?

Music can express emotions that ordinary conversation struggles to reach.

A neurologist can explain demyelination.

An MRI can show lesions.

A blood test can rule out other conditions.

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

A song can.

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

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

Turning the Monster into a Character

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

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

A villain.

Something that can be challenged.

Mocked.

Refused.

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

The disease believes it has won.

Then the person living with MS starts laughing.

Starts writing.

Starts creating.

The monster expected silence.

Instead...

It became the subject of the story.

Why I Write

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

Because laughter and honesty are not opposites.

Sometimes they're survival tools.

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

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

The disease may scar the brain.

It doesn't get to write the ending.

---

Final Thoughts

Multiple Sclerosis changes lives.

It changes careers.

Relationships.

Plans.

Dreams.

But it doesn't automatically take away identity.

We are still the authors of our own stories.

Sometimes those stories are tragic.

Sometimes they're funny.

Sometimes they're angry.

Sometimes they're all four before lunchtime.

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

Because once the monster starts talking...

We finally get the chance to answer.

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)
🎗️ This Is Not A Blog About MS This Is My Life With MS 🎗️

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

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

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

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

My Living Hell podcast lives

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

Myelin Maniacs

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

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

Equinox, MS & the Fog

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

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

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)
This Is Not A Blog About MS 🎗️ This Is My Life With MS 🎗️

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

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

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

Congratulations on Your Multiple Sclerosis!

Thank you for choosing MULTIPLE SCLEROSIS™.

You didn't actually choose it, obviously.

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

“We'll see you again in six months.”

Your MULTIPLE SCLEROSIS™ package may contain:

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

Batteries not included.

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

Welcome to the unofficial instruction manual.

---

IMPORTANT SAFETY INFORMATION

Before operating your body, please read these instructions carefully.

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

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

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

---

STEP 1: ASSEMBLE YOUR SYMPTOMS

Tools Not Included

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

These can include:

Fatigue Battery permanently displaying 14%.

Brain Fog Words may disappear without warning.

Tremor Coffee transportation system compromised.

Spasticity Muscles operating under their own management.

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

Dizziness Floor and ceiling occasionally exchange responsibilities.

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

Numbness Useful when you don't want sensation.

Less useful when you actually fucking do.

IMPORTANT:

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

Do not attempt to understand this.

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

---

STEP 2: IGNORE THE “INVISIBLE ILLNESS” COMMENTS

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

This can cause members of the public to malfunction.

Common error messages include:

“But you look fine!”

Thank you.

My nervous system will be delighted to hear that.

“You don't look disabled.”

Excellent. I'll inform the lesions.

“Everyone gets tired.”

Yes.

And everyone gets headaches.

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

“You were alright yesterday.”

Correct.

Yesterday was yesterday.

This is apparently how time works.

“Have you tried thinking positively?”

No.

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

Thank God you've arrived.

Recommended response:

Smile.

Nod.

Imagine hitting them with the inspirational leaflet.

Continue with your day.

---

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

Welcome home.

Lights flicker.

Things creak.

Doors don't work properly.

Strange noises occur at 3 a.m.

Occasionally something touches you when absolutely nothing is there.

Congratulations.

You are now living inside Neurological Amityville.

Random burning sensation?

Ghost.

Electric shock down your spine?

Ghost.

Foot suddenly feels freezing despite being perfectly warm?

Definitely ghost.

Leg starts vibrating?

Poltergeist.

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

We don't discuss what lives in the basement.

The important thing is not to panic.

Eventually you become accustomed to saying:

“That's new.”

...and then carrying on making tea.

---

STEP 4: INSTALL BRAIN FOG

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

Once activated, ordinary language may become temporarily unavailable.

For example:

Kettle becomes water boiling thing.

Remote control becomes television changer.

Refrigerator becomes cold cupboard.

Socks become foot gloves.

Spoon becomes food shovel.

Names are particularly vulnerable.

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

Mate.

Troubleshooting:

Q: Why did I walk into this room?

A: Unknown.

Q: What was I looking for?

A: Unknown.

Q: Why am I holding a screwdriver?

A: Extremely unknown.

Please return to the previous room.

The original thought may reload automatically.

---

STEP 5: ENERGY MANAGEMENT

Your body contains a rechargeable battery.

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

You may wake up displaying:

27%

Showering: -10%

Getting dressed: -10%

Making breakfast: -8%

Leaving the house: -30%

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

Battery critically low.

Shutting down.

IMPORTANT:

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

Sometimes resting makes you tired.

Sometimes sleeping makes you tired.

Sometimes doing absolutely nothing makes you tired.

This is known as MS fatigue.

It is not laziness.

It is not ordinary tiredness.

And it cannot be cured by somebody enthusiastically suggesting yoga.

---

STEP 6: INSTALL MOBILITY UPGRADES

Your original walking equipment may occasionally become unreliable.

Optional accessories include:

Walking stick.

Crutches.

Rollator.

Wheelchair.

Mobility scooter.

Grab rails.

Anything else that helps you get through the bloody day.

These are tools, not defeats.

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

It's giving some back.

Also, scooters come with horns.

Use this information responsibly.

Or don't.

BEEP BEEP, MOTHERFUCKERS.

---

STEP 7: MANAGE THE BLADDER EXPANSION PACK

This optional feature is apparently extremely popular with MS.

Symptoms may include:

Needing a wee.

Needing a wee urgently.

Needing a wee extremely urgently.

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

And the legendary:

I WAS FINE THREE SECONDS AGO.

Experienced users eventually develop an extraordinary geographical skill.

They do not enter a building and see:

Restaurant.

Shop.

Pub.

Cinema.

They see:

TOILET.

Everything else is secondary.

---

STEP 8: UPDATE YOUR DAILY PLANNER

Old daily planner:

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

MS daily planner:

9:00 — Wake up.

9:07 — Assess damage.

9:15 — Reassess ambitions.

10:30 — Recover from getting dressed.

12:00 — Consider doing something.

12:03 — Too ambitious.

1:00 — Eat.

2:00 — Forget what today's plan was.

3:00 — Nap.

5:00 — Wake up feeling strangely more tired.

7:00 — Wonder where entire fucking day went.

10:00 — Suddenly unable to sleep.

Excellent system.

---

STEP 9: PERFORM ROUTINE MAINTENANCE

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

Annoying, frankly.

So maintenance becomes management.

Rest when you need to.

Move when you can.

Use the mobility aid.

Take the break.

Cancel the plan.

Accept help when you want it.

Tell people no.

Laugh when something is genuinely ridiculous.

Swear when something genuinely deserves swearing at.

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

---

STEP 10: TROUBLESHOOTING

Problem: Leg not responding.

Solution: Turn leg off and back on again.

Unfortunately no switch has yet been located.

---

Problem: Extreme fatigue.

Solution: Rest.

If unsuccessful, rest from resting.

---

Problem: Forgotten word.

Solution: Describe object increasingly aggressively until somebody guesses it.

---

Problem: Tremor.

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

---

Problem: Balance failure.

Solution: Wall.

---

Problem: Bladder warning.

Solution: RUN.

Correction:

Move toward toilet at maximum currently available neurological speed.

---

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

Solution: System recommends sarcasm.

---

STEP 11: WARRANTY INFORMATION

Your MULTIPLE SCLEROSIS™ package comes with:

NO WARRANTY.

There are no refunds.

No exchanges.

No replacement nervous systems.

No loyalty points.

And apparently no customer satisfaction questionnaire.

However...

You may acquire several unexpected accessories along the way.

A darker sense of humour.

An impressive tolerance for bullshit.

An encyclopaedic knowledge of toilets.

An ability to appreciate good days differently.

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

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

---

FINAL ASSEMBLY CHECK

Are all components working?

No.

Have you followed the instructions?

Mostly.

Did it help?

Debatable.

Are you still here?

Yes.

Then congratulations.

Assembly complete.

Well...

Complete-ish.

Because MS may be part of your life.

It may alter what you can do.

It may alter how you do it.

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

But you are not the faulty component.

The disease is.

So use the stick.

Ride the scooter.

Take the nap.

Forget the word.

Find the toilet.

Laugh when you can.

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

Consult the official troubleshooting procedure:

“Oh, for fuck's sake. What now?”

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)
☣ This Is Not A Blog About MS This Is My Life With MS ☣

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

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

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

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 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.⚠️

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

grief ms and loss of family and friends

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

The Drs office

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

ignored not listened to

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

in the early days

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

marijuana and THC CBD oil

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

MS life changing

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

spiritual changes a vision and a voice

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

Drs and hospitals

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

my life changed again for the better

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

loosing friends and family sad thing

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

adopted and really screwed up

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

understanding

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

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

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)
☣ This Is Not A Blog About MS This Is My Life With MS ☣

twitter@goblinbloggeruk - sick@mylivinghell.co.uk

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

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

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

The Finger That Came Back (And Other Small Miracles)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What Would an Borg Think of This?)

An Borg, observing this post, might conclude:

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

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

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

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

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)
☣ This Is Not A Blog About MS This Is My Life With MS ☣

twitter@goblinbloggeruk - sick@mylivinghell.co.uk

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

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

25 classic MS moments turned into the world's least desirable bingo game. Dark humour, brutal honesty and no bloody prizes. Forgot why you entered a room? Tripped over absolutely nothing? Nearly wet yourself while the toilet was twelve feet away? Congratulations you've just marked another square on MS Bingo, the only game where winning feels suspiciously like losing.

MS Bingo: The Game No One Wants to Win

Welcome to MS Bingo the only game where the prizes include fatigue, bladder urgency, brain fog and accidentally walking into a door frame.

No purchase necessary.

No skill required.

In fact, having skill may actively work against you.

All you need is Multiple Sclerosis, a functioning sense of black humour and the emotional resilience to shout “BINGO!” while lying on the kitchen floor wondering why your left leg has resigned.

HOW TO PLAY

Simple.

Read the squares.

Every time one happens, mark it off.

Five in a row?

BINGO.

Complete the entire card?

Congratulations.

You win absolutely fuck all.

Except perhaps an appointment in six months and another leaflet explaining fatigue.

---

THE MS BINGO CARD

1. Forgot Why I Walked Into the Room

You made the journey.

You overcame the legs.

You entered the room.

Unfortunately, your brain forgot to come with you.

Stand there looking confused for thirty seconds.

Return to original room.

Remember immediately.

Classic.

---

2. Tripped Over a Shadow

No obstacle.

No step.

No loose carpet.

Possibly not even a shadow.

Your nervous system simply decided upright was getting repetitive.

MARK YOUR CARD.

---

3. Pretended to Be on My Phone to Hide a Tremor

Nothing suspicious here.

Just checking...

erm...

the weather.

For seventeen minutes.

While gripping the phone with both hands like I'm defusing a bomb.

---

4. Called an Everyday Object “The Thingy”

Could you pass me the...

The...

You know.

The fucking...

THINGY.

Everybody knows what I mean.

Except apparently everybody.

---

5. Nearly Wet Myself Because the Toilet Was Twelve Feet Away

To an ordinary person: twelve feet.

To an MS bladder:

THE NORTH FACE OF EVEREST.

---

6. Walked Like I Was Drunk While Completely Sober

Bonus point if somebody gave you the look.

Double bonus if this happened before breakfast.

---

7. Dropped Something Immediately After Picking It Up

Pick up keys.

Drop keys.

Pick up keys.

Drop keys.

Consider simply moving house and leaving the keys where they are.

---

8. Forgot Someone's Name Mid-Conversation

You've known this person for fifteen years.

You've attended their birthday parties.

You've met their children.

Today their name is:

Mate.

---

9. Bounced Off a Door frame

Door width: perfectly adequate.

Your trajectory: apparently calculated by a drunken satellite.

---

10. Lost My Phone While Holding My Phone

Do not laugh.

The brain fog was conducting an investigation.

The primary suspect was the phone.

Which was in my hand.

---

11. FREE SPACE — FATIGUE

Naturally the centre square is fatigue.

Because unlike normal bingo, MS gives everyone the free square whether they bloody wanted it or not.

---

12. Had to Sit Down After Getting Dressed

Getting dressed.

A task previously considered preparation for the day.

Now apparently the day itself.

---

13. Used the Wrong Word and Just Carried On

"Put the milk in the washing machine."

You know what I meant.

I know what I meant.

The milk knows what I meant.

Move on.

---

14. Leg Suddenly Stopped Cooperating

Left leg reporting for duty.

Right leg:

I'm sorry, this department is now closed.

---

15. Had an Unexpected Spasm in Public

Your body suddenly performs interpretive dance.

Nobody asked it to.

Least of all you.

---

16. Needed a Rest After Having a Rest

Normal person:

"I feel refreshed."

MS person:

"That was exhausting."

---

17. Forgot What I Was Saying Halfway Through Saying It

I was making an excellent point about...

...

...

Oh, fuck it.

Next square.

---

18. Tried to Pick Something Up and Somehow Kicked It Further Away

You bend down.

Miss.

Kick object.

Object travels underneath furniture.

You stare at it.

It stares back.

Object wins.

---

19. Bladder Gave Approximately Four Seconds' Notice

Thank you for your generous warning.

Next time perhaps send the notification before opening the floodgates.

---

20. Had to Explain “No, I'm Not Drunk”

Again.

No.

Still neurological.

Still sober.

Still walking like I'm returning from a three-day stag weekend.

---

21. Forgot Whether I'd Taken My Medication

Did I take it?

I remember thinking about taking it.

Did thinking about taking it become taking it?

Excellent.

Now we have Medication Schrödinger's Cat.

---

22. Started a Job and Forgot What the Job Was

Cleaning kitchen.

Find letter.

Read letter.

Remember email.

Open phone.

See photo.

Start looking at photos.

Twenty minutes later you're sitting down holding a spoon with absolutely no idea how the adventure began.

---

23. Laughed Because the Alternative Was Crying

Possibly the most important square on the card.

Not because MS is funny.

Sometimes it absolutely isn't.

But occasionally the sheer ridiculousness of living inside an unreliable nervous system becomes so absurd that laughter is the only sensible response left.

---

24. Said “I'm Fine” While Clearly Being Held Together by Sarcasm

The universal chronic illness translation:

"How are you?"

"Fine."

Meaning:

Three systems have failed, one leg is negotiating independence and I haven't properly slept since Tuesday, but neither of us has time for the full answer.

---

25. Got BINGO Before Breakfast

Congratulations.

You have achieved peak Multiple Sclerosis.

Your prize is...

another day with Multiple Sclerosis.

Hooray.

---

THE REAL POINT OF MS BINGO

Behind the joke, every square represents something that can be genuinely frustrating, humiliating, exhausting or frightening.

Cognitive problems are real.

Mobility problems are real.

Tremor is real.

Bladder dysfunction is very bloody real.

Fatigue isn't laziness.

And when your body stops doing things you've spent your entire life taking for granted, laughing about it doesn't mean it doesn't hurt.

Sometimes dark humour is simply refusing to let MS have ownership of every miserable moment.

If my nervous system insists on turning life into a ridiculous game...

I reserve the right to take the piss out of the rules.

BINGO.

peace healing love and light to all our readers of this blog thank 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 ☣

twitter@livingwithms - 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, and use AI to help solve this issue so you can understand it lol

Will He Fly Again?

Multiple Sclerosis, False Hope and the Fine Art of Pretending Everything Will Be Fine

He grins, teeth chattering.

Not a cheerful grin.

Not the sort found in toothpaste adverts, family photographs or those irritating hospital leaflets where everyone appears delighted to have a chronic neurological disease.

This is the grin of someone whose body has misplaced the instruction manual.

It echoes through the hollow silence while weak lights flicker overhead, scrubbing unsuccessfully at the final stain of faith.

Second chances?

Of course.

They are probably waiting in the same cupboard as the cure, the reliable bladder and the eight uninterrupted hours of sleep.

Nobody can find the key.

When the Music Stops

A guitar plays somewhere in the darkness.

The notes arrive bent, exhausted and slightly dishonest.

False harmony for a false dawn.

He sits alone in the stillness, surrounded by the remains of everything that was supposed to happen next.

Plans.

Journeys.

Ordinary mornings.

The ability to stand up without first negotiating with several uncooperative limbs and a nervous system apparently being operated by a drunk electrician.

The silence becomes suffocating.

Every reflection is heavier than the last.

Every mirror offers a slightly different version of the same unwanted truth.

Multiple Sclerosis has moved in.

It has not paid rent.

It has rearranged the furniture, smashed several windows and now complains that the heating is inadequate.

The Delusion Department

She paints his illness in the bright colours of hope.

Not because she is foolish.

Because sometimes hope is the only paint left in the tin.

She tells herself he is strong.

He will improve.

He will adapt.

Something new will be discovered.

A treatment will work.

A specialist will finally say the words everyone is waiting to hear:

“We have fixed it.”

The specialist does not say this.

The specialist says things like:

“Disease progression.”

“Symptom management.”

“We’ll monitor the situation.”

Which is medical language for:

“We also have no bloody idea what happens next.”

Still, she clings to the images.

The wishes.

The whispered promises.

He’ll get better.

Ignore the scans.

Ignore the lesions.

Ignore the doctor’s carefully practised expression when the results appear on the screen.

Ignore the cold weight of the diagnosis.

Multiple Sclerosis.

Two words.

One lifetime rearranged.

Everyone Suffers, Apparently

There will always be someone eager to offer perspective.

“Everyone has problems.”

“Just take one day at a time.”

“Try to stay positive.”

“My neighbour’s cousin had something similar and she cured it by removing dairy.”

Wonderful.

The nervous system has been informed.

It regrets the misunderstanding and promises to remyelinate immediately.

Pain is universal, they say.

That may be true.

But some pain arrives, makes a cup of tea and leaves.

Other pain changes its address to yours, redirects its post and starts answering the telephone.

Mourning the past becomes almost impossible because the past refuses to remain politely buried.

It appears in photographs.

In old shoes.

In abandoned hobbies.

In the memory of walking without calculating every step.

Her fear begins to sing.

Not beautifully.

It sounds like old trees creaking in a winter storm.

Branches twisting.

Roots straining.

A whole forest holding its breath while something unseen decides what to take next.

Prayers and Other Failed Treatments

In time, he responds with prayers.

Some are spoken.

Some are thought.

Some are little more than exhausted bargaining directed at a ceiling that offers no comment.

Prayer is strange when illness becomes permanent.

You begin politely.

Then desperately.

Then angrily.

Eventually, you stop asking for a miracle and start asking for one tolerable afternoon.

The dread spreads slowly.

Like rot inside an apparently healthy tree.

From the outside, everything still looks solid.

The leaves remain.

The bark holds.

People walk past and say:

“You look well.”

Inside, the branches are weakening.

The muscles tremble beneath invisible storms.

Each flare exposes another fragile limb.

Another ache.

Another part of life that can no longer be trusted.

Guilt follows close behind.

The guilt of needing help.

The guilt of cancelling plans.

The guilt of being tired.

The guilt of watching someone you love become tired because you are tired.

A wonderfully efficient system.

Multiple Sclerosis attacks the body, then sends guilt along to finish the paperwork.

Waiting for Healing

The limbs listen but do not always obey.

They lie quietly beneath blankets, pretending they may cooperate tomorrow.

Sometimes they do.

Sometimes they stage a full industrial dispute without warning.

There are risks taken for the smallest hope of healing.

New medication.

Different medication.

Higher doses.

Lower doses.

More appointments.

More scans.

More leaflets featuring suspiciously cheerful people walking through sunlit fields.

Every treatment carries a possibility.

Every possibility carries side effects.

The patient becomes a laboratory with a National Insurance number.

A little less pain, perhaps.

A little more dizziness.

Fewer spasms.

More fatigue.

Better movement.

Worse sleep.

Medicine gives with one hand and occasionally clubs you over the head with the other.

Still, you try.

Because the alternative is doing nothing.

And doing nothing comes with side effects too.

The Silence That Burns

Will the disease reveal her fears?

It already has.

Her tears?

Those too.

Silence does not fade.

It burns.

It consumes the memories of a time when worries were ordinary and therefore almost luxurious.

Bills.

Work.

Traffic.

The weather.

The sort of problems one would now happily welcome back with flowers and a small buffet.

Those earlier worries have become distant dreams.

They echo beneath broken wings as he falls.

Not majestically.

Not symbolically.

Usually beside the bed while attempting to put on trousers.

There is rarely anything poetic about losing balance.

The floor does not care about metaphors.

For a while, he believes no grace is needed.

He can manage.

He can cope.

He can force the body to obey through willpower, determination and the ancient British medical practice of refusing to make a fuss.

It works magnificently.

Until it doesn’t.

Will He Fly Again?

Will he fly again?

Possibly not in the way he once did.

Will he know victory?

That depends upon what victory means.

Walking unaided?

Living without pain?

Returning to the person he was before diagnosis?

Those victories may never arrive.

That is the truth nobody enjoys printing on an inspirational mug.

There may be no full recovery.

No cinematic ending.

No miraculous final scene where he rises from the chair as the music swells and everyone applauds.

Real life is usually less considerate.

Perhaps victory is getting out of bed.

Perhaps it is laughing at the disease before it can laugh at you.

Perhaps it is writing down the darkness and making it useful.

Perhaps it is surviving another day without pretending the day was beautiful.

One tear blinds her heart as his body vibrates with uncertainty.

He is not too cowardly to face the truth.

He is simply exhausted from having to face it every morning.

There may be no recovery.

But there is still life.

Damaged, altered, infuriating life.

Life with medication boxes, mobility aids, bladder negotiations, forgotten words and bodies that behave like disgruntled civil servants.

It is not the life they ordered.

There was no receipt.

The returns department has closed.

So they remain.

Not soaring.

Not cured.

Not pretending.

Still here.

And some days, against all reasonable expectations, that is victory enough.

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)
☣ This Is Not A Blog About MS This Is My Life With MS ☣

twitter@goblinbloggeruk - sick@mylivinghell.co.uk

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

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

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

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

Introduction: Welcome to the MS Lottery

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

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

1. Relapsing-Remitting MS (RRMS)

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

What It Is:

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

Key Features

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

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

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

Progression Over Time:

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

2. Secondary Progressive MS (SPMS)

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

What It Is:

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

Key Features:

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

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

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

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

3. Primary Progressive MS (PPMS)

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

What It Is:

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

Key Features:

✔ No early relapses—just steady decline.

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

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

4. Clinically Isolated Syndrome (CIS)

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

What It Is:

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

Key Features:

✔ Single relapse, no prior MS diagnosis.

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

5. Radiologically Isolated Syndrome (RIS)

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

What It Is:

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

Key Features:

✔ No neurological symptoms (yet).

✔ Monitored closely for progression.

6. Other Rare Forms Because MS Loves Variety

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

What Does This Mean for Treatment?

(Spoiler: It’s a Work in Progress)

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

Living with Different Types of MS

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

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

Key Takeaways

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

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

Final Thought:

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

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

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)
☣ This Is Not A Blog About MS This Is My Life With MS ☣

twitter@goblinbloggeruk - sick@mylivinghell.co.uk