Multiple sclerosis  is My Living Hell

spoonie

All posts tagged spoonie by Multiple sclerosis is My Living Hell
  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly—not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone—please reach out for help.

    A Rude Little Guide for the Chronically Ill Who’ve Run Out of F00ks

    You’ve tried patience. You’ve tried gratitude. Now try blasphemy—in biro and blood tests.

    1. Know More Than You Should Turn up with knowledge you shouldn’t have. Whisper about cytokines. Drop the word “iatrogenic” like it’s confetti. Watch their eyes dart.

    “Oh, you didn’t read the 2023 update from NICE? That’s okay, I brought it for you… highlighted.”

    Nothing scares a consultant more than a patient with a brain and a printer.

    1. Give Your Symptoms a Personality Don’t say fatigue. Say:

    “It’s like my soul's buffering and the Wi-Fi's down.”

    Don’t say pain. Say:

    “Imagine being haunted by your own skeleton.”

    You are not a walking checklist. You are a live performance of medical absurdism.

    1. Interrupt Their Monologue with Existential Questions They’ll be halfway through a condescending speech when you hit them with:

    “Do you ever worry the NHS is a cursed machine fuelled by broken people?” “Are you happy? Like, truly happy?”

    You’ve now become a threat and a philosophical detour. Excellent.

    1. Talk About Ghosts Mention you feel like there’s a Victorian child watching you when your medication wears off. Say things like:

    “Ever since the lumbar puncture, I’ve seen colours I don’t think exist yet.”

    They’ll stare. You stare back. You’ve established dominance.

    1. Be Cheerful at the Wrong Moments They’ll list terrifying potential diagnoses. You smile and go:

    “Ooh, collect-the-whole-set vibes.” “I’m gonna need a loyalty card soon.”

    No tears. Just gallows giggles. They hate that.

    1. Cry, But Like an Artist Don’t weep. Wail like a dying swan in a medical drama written by David Lynch. Tell them you cried into your cereal because the spoon reminded you of your body: bent, twisted, and slightly useless. Let them feel the poetry of your decline.

    They’ll pretend to type. They’re actually Googling early retirement.

    1. Bring Props Bring a mood board. A poem. A sock puppet that represents your nervous system.

    “This is Mr. Misfire. He twitches when I lie.”

    Why? Because if you’re going to be treated like a freak, you might as well do it with props and panache.

    1. Question Their God Complex Ask questions like:

    “Is it exhausting being right all the time?” “Do you ever think patients might know things you don’t?” “Do you believe in second opinions, or are you allergic to humility?”

    You might be labelled “non-compliant.” Translation: self-aware.

    1. Say You’re Tired in Ways They Can’t Ignore Don’t just say “I’m tired.” Say:

    “I feel like my blood was replaced with wet cement and bureaucracy.” “My body is on Windows 95 and every morning it fails to boot.”

    They’ll try to convert this into ICD-10 code. They’ll fail. That’s the point.

    1. Tell Them You Don’t Want to Be Fixed They want a treatment plan. A fix. A conclusion. Instead, say:

    “I’m not here to be solved. I’m here to be witnessed.” “You don’t have to cure me. Just see me.”

    It’ll rattle the cage. It’s not in their manual. You just glitched the matrix.

    ☠️ Final Diagnosis: Terminal Authenticity You’re not a case. You’re not a referral. You’re the ghost in their machine, the poetry in their progress notes, the spoonie chaos that won’t be silenced.

    So go in like a storm. Wear your pain like warpaint. And let them choke on the realisation that the most dangerous thing in their office… is a patient who knows who they are.

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

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  • Posted on

    I used to be sharp. Witty. The sort of bloke who could win an argument, quote Back street hero's, and recall the time, place, and insult I used in 1987.

    Now I regularly forget why I’ve wheeled myself into a room, what day it is, or let’s be honest what a room even is.

    Welcome to cognitive dysfunction, brought to you by Multiple Sclerosis. It’s like dementia’s younger, more chaotic cousin but with bonus fatigue, bladder misadventures, and a front-row seat to your own mental unravelling.

    Memory Holes and Swiss Cheese Brains Sometimes it’s names. Sometimes it’s words. Sometimes it’s your entire fooking train of thought, gone like a fart in a cathedral.

    I once forgot the word “kettle” and pointed at it like a confused chimp, muttering: “That hot thing that makes the water scream.” Albertine knew what I meant. She always does. Probably because I’ve done this about 4,000 times now.

    And don’t get me started on conversations. You can be halfway through a sentence and—

    What was I saying?

    The Magical Vanishing Vocabulary Trick My brain has become a magician. Watch it make entire chunks of vocabulary disappear!

    Last week I called a screwdriver “that spinny bastard.” It took three goes to remember the word “remote.” And trying to describe a dream I had was like explaining a David Lynch film through interpretive dance.

    Albertine just sits there, patient as ever, while I mime, gesture, and swear my way toward basic nouns. It’s a sexy look. Like Shakespeare having a mild stroke.

    The Existential Horror of Staring at a Spoon There’s nothing quite like sitting in your kitchen, holding a spoon, and thinking: “What do I do with this?”

    Do I eat soup? Stir tea? Dig a small symbolic grave for my cognitive dignity?

    All of the above.

    Please Hold… Some days, my thoughts load slower than rural dial-up in 1997. You can see it in my eyes—buffering… buffering… spinning wheel of death.

    I try to say something clever, and out comes a noise like a dial-up modem having an existential crisis.

    It’s funny until it’s not. Then it’s terrifying. Then, usually, it’s funny again.

    Because what else can you do?

    A Mind in Pieces MS cognitive dysfunction isn’t just forgetting your keys. It’s forgetting where the word “keys” lives. It’s your brain quietly slipping out the back door while your body tries to carry on the pantomime of normality.

    But I’ll say this: I’m still here. Still watching. Still dangerous. Still me. Even if I occasionally ask Albertine what my own bloody name is.

    And Albertine? She still laughs with me, not at me. That’s love. Or madness. Possibly both.

                             “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

    Today’s spoon count? Absolutely fuck all.

    I woke up, blinked twice, and that used up three spoons I didn’t have. Got dressed? Minus five spoons. Made herbal tea? Minus ten spoons. Drank the herbal tea while contemplating the futility of existence? Surprisingly only minus two spoons.

    By midday I was down to minus one hundred spoons, but hey, who’s counting? Me. I’m counting. Because if I don’t count them, my body will – usually with a dramatic collapse somewhere inconvenient, like Tesco’s freezer aisle, next to the frozen peas.

    So here I am, writing this with negative spoons, like some overdraft I’ll never pay off, drifting through the day with my trademark goblin biker glare that says: “If you ask me to smile, I’ll eat your soul.”

    But yeah, I’m fine, thanks for asking.

    P.S. What’s a Spoonie?

    A “spoonie” is someone living with a chronic illness or disability who uses the Spoon Theory to explain daily life. Spoons = units of energy. Every task uses spoons, and when you’re out, that’s it – game over for the day. It’s a way to explain invisible exhaustion to those blissfully unaware of it.

                 “  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 ✨🧌