Multiple sclerosis is My Living Hell

ms life blog

All posts tagged ms life blog by Multiple sclerosis is My Living Hell
  • Posted on

    ⚠️ 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
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  • Posted on

    Saturday morning. Not hot, not cold just the kind of weather that feels like a cosmic shrug.

    I loaded up the Wav with my faithful wheelchair. Old beast. Secondhand treasure from another life. No shiny new posh van here, just an aging, creaky metal box on wheels that’s been a lifesaver more times than I care to count.

    Sure, it’s a money pit. Over two years, the sensors have staged a rebellion wheel sensor gone rogue, three injectors throwing tantrums, and enough warning lights to power a rave. Repairs? Pricier than a night out in Soho on a bad day. But essential? Absolutely.

    The nearest hospital is a 45-minute drive away, if you believe the speed cameras, traffic chaos, and a city where everyone’s eyes are glued to their phones rather than the road.

    Speaking of eyes, the outskirts greet you with Big Brother’s finest: CCTV cameras perched like vultures on poles, facial recognition tech hungry for your mugshot, and people strapped with body cams as if this was a dystopian reality show.

    I get stared at, sure. Mostly like I’m a circus act. I just laugh quietly and wave at the idiots who think asking stupid questions will get them answers. They keep their distance, probably fearing the curse of a sarcastic cripple.

    We hit a town ten miles away, hills sprawling like nature’s own opera, an orgasm for the eyes no need for music, just the endless parade of fields and road hum.

    The tinnitus racket in my head? Not quite the soundtrack I’d choose, but hey, life’s cruel like that.

    Tesco. The necessary evil. Not my favorite place, by a long shot. I try to avoid supermarkets supporting local is a creed, not a hobby.

    And then, the phone pings.

    Text from the chemist: prescriptions ready from the dreaded “machine of death.”

    As we rolled past the chemist, I clamped my mouth shut—no Saturday morning chaos, thank you very much. Albertine laughed at my silence.

    No one needs the madhouse of a Saturday morning queue, the sighs of the damned, the shuffle of the walking wounded.

    So that’s Saturday morning with the Wav and the wheelchair an adventure in mild dystopia, dark humor, and bleak survival.

    Here’s to the old vans, the broken sensors, the city watchers, and the pharmacy machines that never sleep.

    Auction Musings: The Retro Monkees Toy Car Bid Meanwhile, while waiting for the local auction house to decide my fate, I’ve put a bid in on a retro Monkees 1960s toy car. Because if I’m going to collect sleepers, why not start small and nostalgic?

    Every bid I place somehow turns into a battle for stupid money. It’s like I’m competing in the “Who Will Overpay For metal?” championship. Still, I swear I’ve got an eye for sleepers—even if it’s just the tiny metal kind.

    If I snag it, it’ll be the crown jewel of my shelf, a tiny tribute to simpler times and utterly ridiculous auction wars. If not, well… there’s always the next round of overpriced plastic madness.

    More interesting morning stuff to come…

    I feel the pressure lifting, all this ultraterrestrial stuff stirring my mind, like some cosmic prep for whatever the hell’s next. For now, I’m just here, riding through dystopia, laughing at the absurdity.

            “The views in this post are based on my personal    
            experience. I do not intend harm, only honesty.”   
    
           “By ink and breath and sacred rage, I write.
                    By storm and silence, I survive.”
    

    enter image description here

         @goblinbloggeruk -  sick@mylivinghell.co.uk
    
  • Posted on

    So, it’s Friday. Thank God it’s Friday, I used to think.

    I remember when I first started work at the age of 15. Six-day week, nine till five. No lunch breaks, no tea breaks, just relentless graft and being shouted at by sweaty men with nicotine fingers.

    I got more in tips than I did in wages. The 70s were truly a magnificent time, weren’t they? If you liked black lung, asbestos ceilings, and managers who called you ‘boy’.

    But back then, I could go for two or three job interviews in a day and get offered all three jobs. Insane. The catch? The wages were so bad you’d have to work those three jobs just to afford half a bag of chips and a can of Top Deck shandy.

    🍩 The Doughnut Years I had several weird jobs in my teens. Filling doughnuts with jam in a bakery. General humping of flour sacks. Lasted a week – because nothing screams teenage dreams like crusty jam dispensers and yeast infections (of the bakery variety).

    🛠️ Then Came The Real Work I was never without a job until this MS health fiasco decided to shred my nervous system like pulled pork.

    But before the wheels fell off my life (literally), I was an adult special education teacher. One of the only jobs I ever had where I felt like I was of actual value.

    My students had the best of times, and I was there 100% for them – tall, long-haired, long-bearded biker dude, respected and treated as an equal. We laughed so hard tears streamed down our faces. Riotous laughter that could scare pigeons off the roof. My assistants loved it. My students loved it. We tore down barriers like a biker gang with crowbars.

    ⚽ Gary Lineker and Beyond I had students like Pengi, who thought he was Gary Lineker. Wouldn’t respond unless you called him Gary. Try managing safeguarding reports while shouting “Gary, please put your pants back on”.

    We laughed. We cried. We fooking lived.

    🎓 The Computer Man After that, I went to uni. Reinvented myself as Comp Man. Teaching people how to use Word, Excel, A+, hardware upgrades, networking – all the digital voodoo that turns mere mortals into keyboard warriors. Ran my own small business for a while. Thought I was doing alright.

    💀 Retirement… Or Something Like It And here I am. Retired this year. Totally broke. Destitute nearly. A walking, wheeling monument to how the system rewards graft and compassion with empty pockets and a lifetime supply of codeine.

    But hey. The only light left is Albertine. Hell yeah.

    Even allegedly Aleister Crowley said the universe was divine love or something equally pompous.

    I believe in divine love. And The One.

    So wherever you are, whoever you are, whatever grim corridor you’re shuffling down today, I wish you peace, love, and happiness.

    Because if you don’t laugh, you cry. And I’m too dehydrated to waste tears these days.

           “The views in this post are based on my personal      
              experience. I do not intend harm, only honesty.”   
    
                  “By ink and breath and sacred rage, I write.
                         By storm and silence, I survive.”
    

    enter image description here

               @goblinbloggeruk -  sick@mylivinghell.co.uk