A short story/writing exercise that I did about FM/CFS.

Discussion in 'Fibromyalgia Main Forum' started by dani78xo, Dec 2, 2006.

  1. dani78xo

    dani78xo New Member

    Okay, so a while back, I wrote something, because writing is the only way I can express myself. It's about the changes I've gone through since getting sick with FM and CFS.

    It's really rough, majorly depressing, and completely the opposite of inspirational. But it's how I feel, and I thought maybe others could relate if they've been there.

    By the way, I really hate writing in present tense and I don't know why I did, so it sounds kind of weird just for that. I just needed to get all of it out.

    It's spaced out a lot, so it seems longer than it is, but it is kind of long.

    "I've had a bad day, so I curl up in bed and pray that sleep will break through the afternoon light.

    My breathing slows and I think of a thousand things, anything to make myself tired; anything to enable me to escape this hell that's opened up in the living, breathing, reality of my life, swallowing anything and everything, sucking the glamour and decade long friendships right out of me.

    I daydream about what would happen if I told someone--really, from the heart and earnestly told someone--about my illness.

    About the reprieve that might come with it, like breaking through to the surface of the salty waves of the ocean after nearly drowning, lungs filling with air and knowing that you're alive.

    I think about that, but daydreaming about my illness only baits my mind to think of the crude brutality of it.

    I think about my doctor's appointment next week, making lists of things I need to say. I make an effort to memorize them, knowing I'll forget half of them the instant I walk into the white walled room.

    I sigh, wondering if my thoughts will ever do anything but make me nervous, if my racing mind will ever slow enough for me to take everything in.

    I realize sleep won't come; I'm not suprised, I didn't expect a miracle, I know that the hurricane of thoughts whirling in my mind won't do anything to ease the insomnia.

    It's funny, I think, when I finally open my eyes, that there are a vast diversity of doctors who will diagnose you, but they don't ever tell you how to live again.

    I think about how doctors break the news to you. They walk in, shuffle around a bit, and just tell you straight out, "you have something called Fibromyalgia, and a little bit of Chronic Fatigue Syndrome..."

    They tell you this with straight faces, no hint of empathy or hesitance, no mercy, as if they're telling you about their weekend.

    They might go on to explain it more, in simpler, moronic terms--chronic disease for dummies. Or they might just tell you about your options, which are few.

    Either way, you're not listening by this point, because with those few words, "chronic disease," your whole life comes crashing down.

    You find yourself suddenly skydiving, pummeling through the air, numb at first--until you find that you don't have a parachute.

    From the moment of diagnosis on, you won't stop falling. You might hit a wind current, slowing down your journey to the inevitable, but gravity always wins.

    It's ironic when you wake up one day and realize that you truly are as sick as you feel; that even though other people don't see it, you're in more pain than they could imagine.

    It hurts to see your life slip away like that, your friends dimming until they're just far off lights blurred in the distance, mocking you for staying where you are while they move on with their lives. It hurts to know that life moves on, whether you're ready to move with it or not.

    I wonder if the yearning of the life you once knew ever completely fades away; if you ever get used to staying up until four in the morning--not because you want to, but because sleep is a privledge; one you don't have.

    I wonder if, even though you try and try to get people to understand what you're going through, if they could ever really know, regardless of how intricately you described your suffrage, or the many pamphlets and stories you've given them, all for the sake of being understood.

    My line of thoughts break off, and I sit up as the inevitable dizziness sets in. I wonder if I'll ever get used to not being able to close my eyes and just rest. Maybe in a hundred years, I think caustically, when they've gotten halfway to getting a cure to either disease.

    I still can't move on from the fact that scientists have studied these diseases closely for almost half a century, and still have no idea. A venomous chuckle escapes from my lips, completely void of any humor--I don't remember the last time I laughed and meant it.

    Dragging myself out of the comfort of the mattress, I begin walking slowly to the living room, taking miniscule steps and feeling like I should be an old woman with a walker and a broken hip as opposed to the youthful teenager that I am.

    Stretching my legs, trying to rid them from the cramps as I walk, I grimace in the pain the simple movement brings. My arms hang limply at my sides, not daring themselves to move for fear of the same pain lingering around the corner.

    I think about the homework that I have piled up on the table, and I agonize over the thought of having to think enough to do it. I think about having to stare at the bright white of the papers, trying to fend off distractions as well as migraines. I'm not up to it right now. I'll wait until later, I decide.

    Climbing onto the couch, I urge my arms to hang themselves over the window sill, resting my chin ever so lightly on top of them and watching the trees in the backyard.

    I watch the orange turning leaves rustle in the slight breeze that now brings a hint of crisp frost. I watch the bumbling brook, surrounded by bushes and tall grasses, and, if only for a few spoiling seconds, I feel at peace.

    For those few seconds I can forget about the pain, forget about the depression and the fatigue and the constant want of normalcy. For those few seconds, I'm me again.

    Those few seconds are always too short--never quite long enough to grant me the reprieve that I long for, but always just enough to make the longing worse. Getting a taste of what you can't have is antagonizing to yourself, and only brings about more cries of injustice for what you're going through.

    I know this, but I also know that getting that little taste of normalcy--a foreshadow of the gift I most want--is more important than the multitude of medications that I try, not without side effects, and it's more important than spending hours on a message board full of people who know exactly how you feel.

    That little taste is my heaven in hell, my bittersweet vacation from the inevitable; but for now, I just keep watching out the window, hoping for another few seconds of peace--another few seconds of the life I once had."

    Anyways, that's me. That's how I feel about just part of this illness, and how I can't get past it.

    Criticism, constructive or good, would be nice.

  2. Cinlou

    Cinlou New Member

    I read what you have written.....Knowing that you are only 16 amazes me....the part about having a few moments of reprieve, and having a moment of being almost "normal"...I know what you mean...

    I pray that research finds the answers to these DD.....too many young people suffering, and us "oldies" too...

    I enjoyed reading you post.....
  3. lptopcat

    lptopcat New Member

    Bless your so young heart. You've made me cry and think and cry again.

    Your writing is superb!!! And oh,so true.

    I am so sorry that you have this DD. I am praying always for a cure or at least a remission, now I will pray for you too.

    Hugs to you and my prayers for a cure,

  4. chloeuk

    chloeuk New Member

    I obviously didnt read your intro properly..I was imaging someone in their 40's...you have a real talent that fms or cfs can never take away from you...dont ever give up on your writing, I have read maybe 500books this year because of my illness and I really think you have it..welldone..would love to hear more of your stuff.
  5. kholmes

    kholmes New Member

    Want some thoughts from a fellow sufferer and former English teacher?

    I really liked what you wrote. You express the feelings and frustrations that many--most--of us have felt, while dealing with this. Writing is a great way to express these feelings.

    Good insights here: the privilege of sleep, feeling those brief moment of feeling normal, the feeling of friends disappearing, like "far off lights blurred in the distance" (great phrase).

    Certain vivid images stood out to me: the woman hobbling with a walker; the feeling of falling without a parachute; the orange leaves and breeze bringing a hint of crisp frost. "Crisp frost" is a cool phrase. I also loved the phrase, "my bittersweet vacation from the inevitable," but is this really "inevitable"? Lots of people recover and feel much better, especially if they catch it early.

    Your sentence structure is terrific and your punctuation near flawless. A little bit of word confusion: check the meaning of "suffrage" (I think it means the right to vote), and do you mean a "bubbling" instead of "bumbling" brook?

    If you were to group these sentences into paragraphs, how would you do it? It works nicely as a series of thoughts, though.

    Have you written any poetry? Why not post more of your writing (the Chit Chat board would be an even better place to post your writing; other people post poetry there too). One of the challenges for you will be to write about survival, strength, and that occasional feeling of peace or "normalcy," despite your illness. Can you write about hope as well as the profound frustration we all feel?

    Probably gave you more than you wanted to hear, but I hope you keep writing!


    By the way, check out our Book Club on Chit Chat. Why don't you join us, if you have the time? This month, we're reading an incredibly well-written novel called HOUSEKEEPING, by Marilynne Robinson. It's about two sisters growing up with their eccentric aunt in the Pacific Northwest.

    [This Message was Edited on 12/03/2006]
  6. PepperGirl52

    PepperGirl52 New Member

    Except mine was certainly not as eloquent! I just ranted and went on and on about people not 'getting it'. And I am 54, and have at least had almost 40 years of NOT having to deal with this beyond what you have, Sweetie.

    God bless you-I can't even imagine, but the sad thing is I DO! I know exactly how you feel-but to deal with this and homework, prom night, school functions, other friends not understanding......I can only hope and pray for you that your friends, because they ARE so young, WILL be more understanding and compassionate!!

    We old farts have a tendency to be much more hardened and so wrapped up in ourselves. I think you have a great future ahead of you-an advocate for those of us who are dealing with what you have, but are too old, too tired, and too limited to say it outloud. You go, girl!!! PG
  7. butterfly83

    butterfly83 New Member

    Loved it. You're a great voice for all of us young people who have had our lives taken away. It's different for people who already have had a good portion of the lives led without this illness weighing on them. When you are just the the crux of finding yourself, and choosing your life, for it to be choosen for you like this.. well, it's just cruel.

    So, again, I loved your story. I think I'll save it to read again sometime. Your imagery is particularly good.
  8. cma331

    cma331 New Member


    I hope you get a writing homework assignment....
    and submit your above piece.

    It speaks to your heart. Everyone has to be effected by it.

    I am no master of "critique"....but i loved it.

    It had such feelings; such poignancy; you write straight from everything inside yourself. What a lovely young woman you are.

    Keep writing Babe!!

    I am sure everyone of us that read this;
    had tears dripping down their cheeks.

    I am soo sorry, someone so young as you, has to bear with this DD.

    ((((((((Carole )))))))

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