RETURN TO TABLE OF CONTENTS
Spring 2003 

Readers’ Forum
Correspondence with the Chronicle editor

In the Winter 2003 issue, the Chronicle asked readers to respond to this Hot Topic question:
“If you could wish away one CFIDS symptom, what would it be — and why would you choose it?”

If I could wish away one symptom it would be fatigue. Before I got CFIDS I would ride my bike all over town with my family, work, go to nursing school and maintain my household (cooking, cleaning, paying bills, etc.). Today I am finding myself lying in bed 90 percent of every day because I have no energy. I am a parent of one son and want to be able to play with him and take care of him before he’s all grown up.

Laura Gregory, Arizona

They call it “post-exertional malaise.” I call it “shock the monkey.” Like a caged rhesus monkey, I am now punished for doing anything I love to do. For me, those things would be: a daily three-mile hike; a weekly bike ride on mountain trails; landscaping and gardening; backwoods photography; swimming; traveling and more. It is discouraging and frustrating to be imprisoned in a body that looks out and craves to touch all those things — that is all those things.

I would keep all the “normal day” symptoms — fatigue, fog, palpitations, pain, burning eyes, etc. — if it meant they wouldn’t be intensified tenfold on “PEM” days. I could focus enough on other interests and grow in other ways that better accommodate this illness and allow me to accept the new “CFIDS me.”

Lois Ventura, Pennsylvania

If I could wish away one symptom, it would, without a doubt, be brain fog. I can face any pain better if I can use my brain’s power of concentration to help rise above all the symptoms of CFIDS and fibromyalgia. It’s bad enough to feel as if I am one of the walking dead without being able to tell anyone else just what I am going through. After 14 years, the brain fog has continued to sap what little strength and dignity I once had, and has had devastating consequences to my roles of wife and mother, and to my former career as a clinical laboratory scientist.

Linda E. Lowe, California

I would wish away insomnia, because I have at least twice as much energy after a good night’s sleep. Although I quit worrying about what time I fall asleep a while ago, it is still boring to lie in bed at night, too tired to even read, waiting for sleep.

Inez Storck, Maryland

I would wish away my brain malfunctioning. I can handle physical limitations, but at least, if nothing else, I’ve always had my mind to rely on. Now, I’ve had several car accidents because of my cognitive problems, have a difficult time remembering the most simple tasks and lose my train of thought in conversations very easily. It’s extremely embarrassing! I just want my brain back.

Cindi Boykin, Alabama