chronic fatigue syndrome, fibromyalgia, fms, cfs, empowerment groups, cfids

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by Yvette Taylor

My very best friend is a large heating pad, the kind you need to have a trigger finger to operate because it gets so hot that if you fell asleep with it on, you would wake up as a barbequed entré e . I open my eyes every weekday morning to my jarring alarm clock, as I'm snuggled in my cuddle-ewe bed, with a pillow between my knees. What kind of day will this be? I assess which parts of my body are pain-free, if any, my ever-present heating pad by my side. After 30 minutes of maneuvering my body around the heating pad, I get up gingerly and head for the bathroom, where I take my meds and hope for the best.


As all of you know, every day is different with fibro. I've forgotten what it means to have energy and am constantly thankful that this disabling disorder did not strike me when my extremely hyperactive Danny was born when I was 40 to join his calmer 5-year-old brother, Michael. I really needed energy then and more . . . much more. Danny never walked—he ran and never stopped. When he was one, my best friend, her child, Dan, and I went to Mommy and Me gym. It was a great socializing experience for the moms and their babies. All the moms chatted and laughed as their children timidly crawled nearby, tentatively examining the baby gym equipment—except for me. I was running around the equipment: Danny was at the other side of the gym attempting to climb up the walls and making mad, carefree dashes from one end of the gym to the other. When one young mother asked me how I did it, I replied, “I have no choice. If I didn't chase after him, he'd be in Cleveland by morning.” My older son was easier, but the usual sibling rivalry reduced me to the kind of exhaustion that I now have simply because of fibro. No more running for me!


I realize now how blessed I am, and I shudder to think of what it would have been like if I had to raise two children while suffering with fibro. I admire and empathize with those who do it all, despite the pain and fatigue. I was not plagued with this situation until my children were older, old enough for Danny to say “If I had a nickel for every time you said “OUCH,” I'd be a millionaire.” Mike was not as interested in the money or else he was a better actor. He tried to help me, by pulling me out of chairs and occasionally getting me off the floor!


All of you know the challenges we live with. It is not funny, but if we cannot find moments to laugh while we wait for researchers and government funds and legislation to help us conquer this disorder (and its close cousins chronic fatigue and Gulf War syndrome), we will end up much worse than we have to be. I am an editor working on two research journals published by a nonprofit national association. I have the luxury of working at home, mostly on a computer, sitting on an “ergomatic-friendly” chair. I use quotes because I cannot even imagine how painful it would be without the “friendly” part, considering that I have to get up every 30 minutes to tour my house . . . slowly. If I get very tired or hurt too much to sit, I go back to bed. I have been known to work lying in bed on my back with a laptop on my stomach. It works for awhile; I work for a while. At least I am able to give in to my enemy, fibromyalgia. If I miss an afternoon of work, I can do it later or on weekends. The deadlines I constantly face keep me going. I am lucky that my fibro fog hits more often when I speak rather than when I work. No one in my house turns a head when asked to “walk the kitchen.” My husband or son nonchalantly grabs the dog and leash and heads out for a stroll.


Aside from dancing with Ellen Degeneres and my verbal parakeet who says, “Dance Mommy Bird,” dog-walking is my usual exercise, but often I just cannot do it, especially when no one is home; then poor Barbie June is relegated to 2 minutes in the backyard. I have had too many experiences where I'd start out fine and then couldn't walk. I've met some nice neighbors that way! I also have a “safe” house.


One of my neighbors has fibro and two young children. I have been told by her daughter that her mother takes them to school still wearing her pajamas and then goes back to bed, so I always know where to find her in an emergency. One bright, sunny Florida morning, I was walking the dog. I was wearing an “outside” robe, certainly not something anyone else would leave the house wearing, and shoes that should also never see the light of day. When I got home, I discovered to my horror that my son had gone to a doctor appointment and locked me out. After the appointment, he was going straight to school, where I would not be able to get in touch with him. There I was, basically in my nightgown, with no key. Because of speed dial, I couldn't remember Mike's cell phone number. Then I recalled my emergency key, which of course, much to my distress, had been removed in another emergency and never put back.


I went to my safe house. My friend was still in “inside” clothes, but she immediately got her keys, after looking at me with my hair in disarray, no make-up, and dressed for bed, took me to the doctor's office, where I had to walk through the office with the dog, who is too mean to leave in a car with anyone. Mike was already seeing the doctor. The receptionist was away from her desk. Amidst some very strange looks, I knocked on the doctor's door. When he opened it, he just shook his head; he knew me and all about my problems, so he didn't call 911; he just let me in. Mike looked at me with shock, realizing immediately what he had done. He gave me his house key, and without a word spoken, I walked through the waiting room once more, and went home, where I spent the rest of the day in bed in the outfit.


It was almost as embarrassing as the time we were at the beach in those carefree pre-fibro days, walking through a tunnel toward the car, and baby Mike pulled down the front of my bathing suit as a family was approaching us. I grimaced, then smiled and said, “How nice to meet you”; my husband was not amused.


Fibromyalgia isn't funny. I can't go to my community aquasize sessions. Imagine, being in a pool a half mile away at 8:30 a.m. It is extraordinarily scary to think that I will never again be pain free and have enough energy to be somewhere every day at 8:30, even though I know it would help me. I am aware that I may not be able to work much longer, but I'll give it my all.


I am very lucky to have an understanding husband, who does all the cooking that I just don't want to do because I am so tired and not hungry. My weight depends on the medication I'm taking; I went from my usual 120 pounds to 104 in a very short time. That lasted a few months after several tests to make sure I didn't have a terminal disease, and continued until I started a new medication that got me back to 120 and added 10 more pounds of belly fat, despite what I ate or didn't eat. In my closet are four pair of jeans, sizes 6, 8, 10, and 12. This week, if I ever get dressed, I wear the 10s.


Actually, fibro is good for my husband, a college professor. On weekends, he just wants to stay home after dealing with people all week. We used to argue constantly about that because I wanted to go out after working all week at home. Now I don't even have the stamina to argue, much less get dressed and leave the house, although I still complain to him about staying home, just to keep in peak form in case I ever get my energy back!


I work for the American Association on Mental Retardation, and their mission is also mine, to help individuals with mental retardation through research, policy, and legislation. I have two missions now; the other to help people understand what fibromyalgia is so they will not have to go to 20 doctors, each of whom will probably suggest a psychiatrist. I have learned that for the past 5 years, fibromyalgia is now included in medical school curriculum, which should begin to help our cause.


I am writing this in part because I discovered P.A.N.D.O.R.A. and Marla Silverman. I never joined a support group because I thought it would just be people sitting around commiserating, although that's great too. I couldn't, however, justify the time or effort. Last year, I heard about a fibro conference on the radio. I called the number and found P.A.N.D.O.R.A. and Marly , who wrote on the web site:


It is my desire with the help of the board of directors, to build P.A.N.D.O.R.A. as a solid, strong and meaningful charitable organization, based on hope, strength and on the enlightenment of the human spirit. Hope is eternal, hope for a cure is what neuroendocrineimmune disorders (CFS, FMS, GWS, MCS) patients hang on to survive. This is the first step to lead productive and thriving lives despite the illness.

It is my dream that P.A.N.D.O.R.A. creates a legacy based on good deeds and caring concern for neuroendocrineimmune disorders patients. This dream of mine is to provide empowerment, resources and encouragement so that (persons with neuroendocrineimmune disorders) can survive and thrive while dealing with such debilitating health conditions. Ultimately, P.A.N.D.O.R.A.'s good deeds will make a contribution to the process of finding a cure for Chronic Fatigue Syndrome (CFS), Fibromyalgia (FMS), and other neuroendocrineimmune disorders.

I hope you join P.A.N.D.O.R.A., by contributing in any way you can. Through your financial contributions, your volunteering in our future events, and your involvement in raising awareness to our advocacy issues, P.A.N.D.O.R.A. will certainly strengthen the community we live and work. In Judaism [when we practice Tikkum Olam - by helping one person, we ARE THOUGHT TO REPAIR THE WORLD. Together we can reach these noble goals.

I joined P.A.N.D.O.R.A., and if I can do half of what Marly and other members do, despite fibro and chronic fatigue, it will mean that I have not given up the fight, that I have not given up on life, and that I can hope again.


Copyrights 2005


Note: The great article you just read was poignantly written by Yvette Taylor, a fellow Fibromyalgia survivor and thriver who cleverly and humorously points out the value in joining an empowerment support group and participating in her own special way in P.A.N.D.O.R.A.'s efforts. She now volunteers as our "in-house" Editor. Thank you Yvette for supporting P.A.N.D.O.R.A.!



© 2006 P.A.N.D.O.R.A., Inc. All Rights Reserved.