Living with CFIDS - A Personal Story

Discussion in 'Fibromyalgia Main Forum' started by PVLady, Jan 31, 2006.

  1. PVLady

    PVLady New Member

    Here is another good story I took from the CFS Association website today..

    Living with CFIDS: Personal Stories

    If you're reading this, chances are that you or someone close to you has CFIDS. As such, I'm not going to delve into the clinical aspects of the illness here: You're more familiar with them than you'd like to be.

    Instead, I'm going to explore a question that's been whirring in my head like a chainsaw: Who would I have become if I hadn't developed CFIDS almost fourteen years ago?

    August 17, 1991, my mom and I were at a jewelry show. I was twenty-four years old, worked as a domestic violence victim advocate, wrote freelance, walked six miles a day, and my roommates and I were throwing a party later that night. Mom was a deputy prosecuting attorney at that time and we were taking a much-needed break, looking at amber and burnished silver and hand-carved beads.

    Here's the part of the story that I have to tell as if it happened to someone else. In my mind's eye, I see myself from a distance, like a character in a film.

    "I feel dizzy," I say to Mom.

    "Let's get you some food," she replies.

    We go outside and get hotdogs and Diet Cokes from a vendor. We sit for awhile, careful not to bask directly in the mid-afternoon sun. I feel more stable, but not quite right. Still, I want to look at jewelry.

    "Let's head back in," I say and toss our debris in the trash. "I'm sure I'm fine."

    Five weeks later I was in a wheelchair. Of course, nothing has been the same. In the past fourteen years, I've had periods where I worked full-time and I've had an episode where I was again wheelchair-bound. I've written and directed and produced two plays, and I've had months where I've walked with a cane or crutches and needed help with the simplest tasks. At no point have I been symptom-free, however, even for a moment. That day at the jewelry show was the last time, perhaps for the rest of my life, that I didn't feel like I have a powerful flu.

    I'm an optimist. (Sardonic, but an optimist.) Since becoming ill, I've published dozens of articles and fallen in and out of love and had great sex and dinner with friends and imbibed organic dark chocolate at matinees and read countless books from the teetering stacks in my bedroom. I don't let CFIDS define me. But everything is refracted through its prism and I hate this. If I take on a deadline, how much cushion should I leave for when my fever inevitably spikes and I can barely concentrate? If I need to use a cane that evening, should I go on the date or cancel? If I sit up through the film, will I still be able to drive home? And how I can expect someone I love to live with my illness when I can barely stand to live with it myself?

    So, who would I be today if I hadn't developed CFIDS? Would I still take stairs two at time? Would I have moved to New York ? (This is the only one I can answer with the utmost certainty: Yes.) Would I have completed my book? Would I take my health for granted, as if it were gravity or the sun's burning? Conversely, would I have learned to appreciate how finite life is? (What is illness, really, if not a reminder of death?) Would I be as resilient as I am today? (When you have to fight your body in order to stand or walk, transacting with editors is not that big a deal.)

    I'll never know the answers to these questions and perhaps, as such, I should stop asking them. But there remains a part of me untouched by CFIDS, and she wants some answers. For her, I'm grateful. Without her, I'm over. She deserves some answers. With a treatment or cure, maybe she'll get them.


    My bio:
    Litsa Dremousis wrote, directed, and produced the plays, "If I Wake Before I Die" and "9:00 in the Afternoon". Her work appears in McSweeney's, The Believer, BlackBook, Paper, MovieMaker, Poets and Writers, Paste, The Black Table, Bookmarks, Kitchen Sink, Skirt, Cranky, and on NPR. Among others, she has interviewed Augusten Burroughs, JT LeRoy, Sherman Alexie, Tim Blake Nelson, Amanda Koster, Stacey Levine, and Alien Crime Syndicate's Nabil Ayers. She read her McSweeney's piece, "An Open Letter to Keith Richards' Immune System" on NPR in April and her short story, "A Young Irene Dunne, Maybe", at the Seattle Art Museum in May. Her interview with The Long Winters' John Roderick will appear in The Believer in June and her cover story on Death Cab for Cutie will appear in Paste in August. She is a winner of BlackBook's Hemingway Short Story Contest.

  2. elsa

    elsa New Member

    What a joy it was to read her writing. From that very little blip of her style I can see how she has won awards for her short stories.

    From a personal perspective, I don't ever think of the "what if's". For me, that is the quickest slide into insanity there is. If I cannot change something .... if it's a done deal as CFS/FMS is, then I only look forward. I wonder if I don't have that inner chick who is untouched by this illness? She doesn't say much if she is indeed around.

    It may be a simple way to live, but for me ... "What is, is". If it's a done fact, then it's done. I can only move forward, dealing with the "done fact" as best I can.

    I also think I just might be a better person because it it. I know many here will say "get real!", but it's true.

    I have spent some time thinking on this .... as I get better, more into remission, I have learned the next step is re-learning how to live with this not being in the very forefront of my day to day. Actually takes some practice on my part.

    There are many aspects that are for the better now ... Like the author above ... when you deal with CFS/FMS on a daily basis .... dealing with a editor is no big thing. How true. Just yesterday I let the head of accounting know that under no terms was "deciding for me" to participate in a retirement plan acceptable.

    She looked at me like I had gotten just to uppity for my on good.
    She said I have to .... "No ... I don't" She said, yes, National says you have too .... "No, I don't ... watch me ... " ... Why in the world don't you want to participate ... "No one asked me ...."

    You are going to have to trust me on this ... I will not be doing something I don't want to with something as personal as finances because someone said "I have to".LOL Wish ya'll could watch!

    Point being .... we are so much tougher and ,believe it or not, ... CONFIDENT ... in our daily dealings ... Good Lord, we face the Monster everyday ... not much from our daily lives can compete with that.

    Thank you again ... I enjoyed reading her work. This tough as nails, Princess Pollyanna is going to go sharpen her teeth on an unsuspecting CFO. Looking forward to it!

    Take care,

  3. dancingstar

    dancingstar New Member

    If you lived closer, I think you might have to be my best friend!
  4. surfnut

    surfnut New Member

    Can anyone tell an occasional visitor what `Bump ` means in these replies? (Spot the bloke)Thanks, Surfnut
  5. PVLady

    PVLady New Member

    Bumping means we just enter the word bumping to "move" the message back to the first page so others can still see it and respond.

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