â ď¸ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarityânot to harm or replace professional advice. Iâm not a doctor or therapist, just someone who gets how hard it can get. If youâre struggling, youâre not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.â ď¸
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 as I post this I am suffering with a stress attack with brain fog,and my autonomic dysfunction is strangling me making it harder to breathe looking like the nxt few days are going to be a bit unpleasant.. still remember to hydrate and not to over do things like I have and am really paying for it now due to me not taking my own advice still things have to be done until I cant any more physically and mentally as I slide deeper into this progressive ms but thatâs life
Because apparently losing control of your nervous system wasnât humiliating enough
Multiple Sclerosis is many things.
It is painful. Exhausting. Frustrating. Unpredictable. Occasionally terrifying.
It is also, and nobody puts this bit on the cheerful NHS leaflet, spectacularly fucking embarrassing.
MS doesn't merely attack your nervous system. Oh no. That would be far too straightforward.
It waits.
It studies you.
It learns precisely which remaining scrap of dignity you still possess...
...and then kicks it down a flight of stairs while you piss yourself trying to remember what a staircase is called.
Welcome to another glamorous day with Multiple Sclerosis.
Here are 20 of the most embarrassing things MS can throw at you.
And before somebody sends me a strongly worded email: yes, these things are serious. Bladder dysfunction, bowel problems, cognitive impairment, tremor, mobility problems and spasms can have a massive effect on somebody's life.
Sometimes laughing at the bastard is how we survive it.
1. The Emergency Toilet Sprint
Your bladder sends an urgent neurological telegram:
TOILET. NOW.
Unfortunately, your legs received a completely different message:
Weâll get back to you within three to five working days.
So begins the world's slowest emergency sprint.
You can see the toilet.
The toilet can see you.
There are twelve feet between you.
It may as well be fucking Everest.
2. Pissing Yourself in Public
There isn't really an elegant way of describing this one.
Sometimes MS means you don't make it.
You can plan routes around toilets, restrict drinks, wear protection, know every accessible loo within a twenty-mile radius and still occasionally discover that your bladder has declared itself an independent republic.
And nothing restores your dignity quite like standing in public thinking:
Well. That's wet.
3. The Fart of Uncertain Intentions
For most people, passing wind is a fairly straightforward administrative procedure.
With dodgy sensation and bowel problems, however, every fart becomes a high-stakes negotiation.
You think:
"Probably safe."
Your bowel replies:
"Interesting theory."
And suddenly you're gambling with odds that would get a casino investigated.
Never trust a fart when your nervous system is being operated by drunk electricians.
4. Walking Like You've Drunk Twelve Pints While Completely Sober
There you are at ten o'clock in the morning, staggering down the pavement like you've spent the night drinking industrial quantities of whisky.
You haven't.
You're completely sober.
Your balance just happens to resemble that of a pirate walking across a trampoline during an earthquake.
The looks from strangers are particularly charming.
You sometimes want a T-shirt saying:
I'M NOT PISSED. MY BRAIN HAS JUST LOST CONTACT WITH MY LEGS.
5. Falling Over Absolutely Nothing
No ice.
No kerb.
No loose paving slab.
No small child with a tripwire.
Nothing.
One second you're standing upright.
The next you're examining the carpet at extremely close range.
Someone inevitably asks:
"What did you trip over?"
My central nervous system, apparently.
6. The Wall Bounce
Why simply walk through a doorway when you can enter it like a pinball?
Left shoulder.
Right shoulder.
Door frame.
Cupboard.
Possibly the dog.
Eventually you arrive in the next room looking as though you've just escaped a pub fight.
Technically, you successfully walked ten feet.
Achievement unlocked.
7. Missing the Chair
You have been sitting down successfully for most of your life.
It isn't a new skill.
You understand the basic concept.
Chair behind bottom.
Bottom goes down.
Civilisation has relied upon this technology for centuries.
Then MS gets involved.
Suddenly sitting down requires trajectory calculations normally performed by NASA.
And occasionally...
you miss.
8. Dropping Absolutely Everything
Phone.
Keys.
Fork.
Remote.
Cup.
Pen.
Medication.
The thing you've just spent twenty minutes looking for.
There comes a point where you stop picking things up immediately because experience has taught you that you'll probably drop the bastard again.
Eventually the floor becomes a secondary storage system.
9. The Fork-to-Mouth Navigation Failure
The objective is simple:
Move food approximately twelve inches from plate to mouth.
Unfortunately your nervous system has decided this requires experimental choreography.
Food goes onto your shirt.
Onto your cheek.
Onto the table.
Possibly into your hair.
Your mouth sits patiently nearby wondering why nobody invited it.
Fine dining with MS.
Michelin would be appalled.
10. The Brain-Fog Conversation Crash
You are halfway through a perfectly intelligent sentence.
You know exactly what you're talking about.
Then...
Nothing.
The thought has vanished.
Not hidden.
Not temporarily misplaced.
Deleted.
The other person waits.
You wait.
Your brain displays the neurological equivalent of:
404 â THOUGHT NOT FOUND
Eventually you say:
"I've forgotten what I was saying."
They helpfully reply:
"You were talking aboutâ"
YES, THANK YOU, I KNOW I WAS TALKING.
THAT'S THE PROBLEM.
11. Forgetting the Name of Someone You've Known for Twenty Years
You recognise their face.
You know where they live.
You know their partner.
You've been to their wedding.
You may even know their dog's birthday.
Their name?
Gone.
So suddenly everybody becomes:
"Mate."
"Love."
"Hello... you."
Nothing suspicious about that whatsoever.
12. Using Completely the Wrong Word
"Pass me the... food shovel."
"The what?"
"The silver thing."
"A spoon?"
"YES. THE FUCKING SPOON."
Brain fog doesn't necessarily remove the concept.
Sometimes it merely removes the perfectly ordinary word describing it.
So your house becomes filled with exciting new objects such as:
The clothes washing box.
The cold cupboard.
The television changer.
The foot gloves.
And the thingy.
Especially the thingy.
13. The Leg That Resigns Without Notice
Everything is going surprisingly well.
Left leg working.
Right leg working.
Walking happening.
Excellent.
Then one leg suddenly announces:
I no longer recognise the authority of the brain.
It drags.
It buckles.
It stops.
Or it wanders somewhere you hadn't intended.
Apparently collective bargaining has reached the spinal cord.
14. Getting Trapped in Your Own Clothes
Putting trousers on should not require strategic planning.
But when balance, weakness, stiffness or coordination are having a bad day, getting dressed becomes an escape room in reverse.
One trouser leg twists.
Your foot disappears.
You lose your balance.
Now you're hopping.
Hopping was a mistake.
Eventually you're lying sideways on the bed wearing one sock and quietly threatening a pair of jeans.
15. The Public Tremor Performance
You are carrying a cup of coffee.
The cup is full.
People are watching.
Your hand suddenly decides it has always dreamed of becoming a cocktail shaker.
Coffee begins performing orbital manoeuvres around the rim.
You stare at it.
Everyone else stares at it.
You attempt to walk very carefully.
This naturally makes everything worse.
By the time you sit down, you've transported approximately 40% of the coffee.
The rest is decorating the route.
16. Being Defeated by a Sofa
You sat down.
This was your first mistake.
Twenty minutes later you decide to stand.
Your legs disagree.
So begins the launch procedure.
Rock forward.
Rock back.
Forward.
Back.
Forward again.
Hands on knees.
Push.
Nothing.
Reposition.
Make strange noise.
Try again.
Eventually you achieve verticality with the elegance of a newborn giraffe being fired from a trebuchet.
17. When MS Invites Itself Into Your Sex Life
Nobody puts this in the glossy information leaflet either.
Numbness.
Altered sensation.
Spasms.
Pain.
Fatigue.
Weakness.
Bladder urgency.
Parts of your anatomy apparently working to completely different timetables.
Romance can occasionally become less:
Fifty Shades of Grey
and more:
Could you move my leg? It's gone numb and I need a piss.
Sexy.
Very sexy indeed.
18. The Sudden Spasm
Your body suddenly jerks.
You didn't request it.
You didn't approve it.
You weren't consulted.
MS has simply activated the random movement generator.
Naturally this often happens at precisely the moment you'd prefer to appear calm and normal.
Your body:
SURPRISE!
19. The Scooter or Wheelchair Manoeuvre of Shame
Mobility equipment gives independence.
It can also provide opportunities for spectacular mechanical humiliation.
Doorways become narrower.
Shop displays become magnetic.
Furniture develops suicidal tendencies.
You misjudge a corner.
Clip something.
Reverse.
Clip something else.
Reverse again.
Now six people are watching.
At this point there is only one sensible course of action.
Pretend the entire manoeuvre was deliberate.
Professional driver.
Obviously.
20. Having to Explain Any of the Above
And perhaps this is the final indignity.
Something embarrassing happens.
People stare.
Someone asks whether you're alright.
And you find yourself calmly explaining:
"I've got Multiple Sclerosis."
As though MS is some badly behaved child you've brought shopping.
Meanwhile inside your head you're saying:
YES, THANK YOU, NERVOUS SYSTEM.
ANOTHER FUCKING MASTERCLASS.
Eventually, Embarrassing Just Becomes Tuesday
There is a peculiar point you can reach with chronic illness where the definition of embarrassing starts changing.
You fall over.
You laugh.
You forget a word.
You invent another one.
You spill your drink.
You clean it up.
Your bladder betrays you.
You deal with it.
Not because these things aren't difficult.
They bloody well are.
Loss of independence is real.
Loss of confidence is real.
Bladder and bowel dysfunction can be devastating.
Cognitive problems can be frightening.
Mobility problems can fundamentally change somebody's life.
But embarrassment depends partly upon believing your body shouldn't be doing these things.
After living with MS long enough, you begin to understand something.
Your body is damaged.
Sometimes it misbehaves spectacularly.
That isn't a moral failing.
So eventually you stop apologising quite so much.
You start adapting.
You start carrying spare clothes.
You learn where every toilet is.
You laugh when you've called the refrigerator a cold food wardrobe.
You swear at your legs.
You negotiate with your bowels.
You glare suspiciously at stairs.
And somewhere along the way, the ridiculous becomes normal.
Because after enough years with Multiple Sclerosis...
âEmbarrassingâ gradually becomes âTuesday.â
Welcome to My Living Hell.
Real life. Real MS. Real humour.
No inspirational fucking butterflies required.
and yes I have had many incidents like those above over the years.. remember when you go out be prepared for every eventuality sending everyone peace healing love and light
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 âŁ
@goblinbloggeruk - sick@mylivinghell.co.uk
