By Kylie Addison Sabra
I knew a woman; it’s hard to believe it was only four years ago. She possessed boundless energy; jogging the 30-block roundtrip to and from her Seattle job, laptop case bouncing along behind her. There, she put in a ten- to 12-hour day, only to return home and prepare dinner, clean house and settle her family in for the night. I wish I knew where to find her. You see, I was she.
Two years ago, I was diagnosed with fibromyalgia, also known as FMS. I know now that I’ve had the condition since the late 70s, when I was diagnosed with chronic fatigue syndrome (CFS). I’ve lived with chronic pain for nearly as long as I can remember. It never occurred to me that everyone didn’t experience pain as a normal part of their life. It’s like growing up in a dysfunctional family: You figure everyone’s family is nuts.
By 1995, I was relying heavily on over-the-counter painkillers in order to function. I remember asking a friend of mine, who was a nurse, what was the maximum dose of ibuprofen I could take each day. She answered with 2400 mg, never imagining I would set up this maximum as a part of my daily routine. I could regret that decision, as I enter stage three kidney disease, but I would not trade those 18 relatively pain-free years for anything. The kidney disease diagnosis fell upon me at the same time as the “official” FMS verdict in 2011. Since then, I am forbidden to take painkillers of any kind. Vicodin is prescribed, but can only be used when pain is unbearable. I reserve it, like a fine wine, for special occasions; like our recent trip to Seattle for the Christmas tree lighting. I had waited so long for my first grandchild, only to find that holding this precious newborn was too painful. I’m an avid reader, but often find it difficult to hold my e-reader for any length of time. Life was lackluster at best.
FMS patients are known within the medical community to be among the most non-compliant. The first thing an FMS patient is told is that they have to exercise. When every move is excruciating, the FMS patient is not terribly motivated to comply. Guess what? You have to exercise. Since painkillers were pulled from my repertoire of tools to fight FMS, I settled into perpetual immobility, resulting in shocking swelling that I assumed was part of the kidney damage. Each motionless day only brought more pain. Any effort to walk ended in tears and frustration. To add insult to injury, I also have osteoarthritis and a lovely set of bone spurs in knees devoid of cartilage. This brought me to my orthopedist, who gave me the first encouragement to date. He declared walking was out of the question and prescribed water aerobics. I attend an intensive water aerobics class two to three times a week at the local YMCA. Additionally I do physical therapy, specifically designed for arthritis patients, in a warm pool once a week. The difference is phenomenal.
I am working out with men and women ten to 20 years older than me. Yet they are in significantly better shape. At the end of my first workout, just reaching to put on my socks and shoes was a painful and exhausting endeavor. Out of the corner of my eye, I spied two older ladies looking at me with sympathy. I laughed and said, “I’m looking forward to the day when getting dressed is not considered a workout.” That was four weeks ago. I can now prop my foot up on my knee and easily don socks and shoes. No more heavy breathing or wincing from pain. I still can’t walk any great distance; however, my condition today compared to just four weeks ago reflects an astonishing improvement. I can’t wait to see what the next four weeks, eight weeks, six months, year have in store for me.
There is another side to FMS that can be as frightening as its physical effects. The term “fibro fog” has been coined to describe the reduced cognitive thinking abilities. That woman I used to know, the one I’m looking for; she used to store massive amounts of numerical data in her head. I jokingly referred to her as a walking compendium of useless information. She was that person you could walk up to and ask for a phone number, a street address, or a date. Without blinking an eye she’d pull it out of that file cabinet that apparently existed in her brain. At one point in her career as a trade show manager for a worldwide medical equipment manufacturer, she managed in excess of 2,000 action items on any given day. Yes, I want to find her again.
Today, I am a virtual art gallery curator and a writer. I keep a calendar with me at all times. It does not include high-level corporate activities. Rather, it includes every detail I need to function. The most frightening aspect of why I have this calendar is not to remind me of appointments, but to remind me of what today is. I am more apt to miss a deadline or event, not because I did not know of its existence, but because I simply did not know what day it is today. I was that woman who used to keep track of a myriad of phone numbers and addresses in her head; now I frequently can’t remember my own. I write it in my calendar.
There is hope. Exercise is crucial, as is good sleep and good food. Keep a calendar to make managing your life easier. Don’t hide your fears or your pain. Speaking it out gives it less power. First and foremost, take care of yourself and seek joy.