🎗️ 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 ☣
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𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
