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Winter 2004 

One To One
Tips, strategies, ideas and helpful thoughts about CFIDS

Explaining CFIDS to others
I’ve been sick for 16 years. I live in a small town and when I bump into former colleagues or neighbors, they assume I’m cured because I "really look great."

I reply, "If I weren’t doing pretty well today, you wouldn’t have seen me. I’d be in bed."

Others ask, "What exactly is wrong with you?"

I say, "I have CFIDS/ME."

"What’s that?"

"Doctors aren’t sure. Something is the matter with my immune system. I feel like I’ve got a terrible case of the flu all the time, and maybe I do. I’ve also got a ton of allergies I never had before."

If they keep asking, I keep answering with the latest research efforts. When the encounter is ending, I say, "Oh, some people call this disease chronic fatigue syndrome."

That always startles them. "I’ve heard of that. I never realized how bad it can be."

That, of course, is the outcome all people with CFIDS want: an informed and concerned public.

Kathleen T. Choi
Hawaii

Music can boost energy
As a long-term CFIDS patient and an Alzheimer’s caregiver for my mother, each day presents challenges. The hardest part is getting my mother up, fed, medicated, bathed and dressed, which usually takes just over an hour. Energy is always at a premium and on days of extreme exhaustion, I sometimes wonder if I can make it through all the steps.

To help me get through all the tasks, I’ve found a certain type of music quite helpful. While most contemporary music is not for me, I’ve discovered the powerful and beautiful voice of Clay Aiken from American Idol. I taped his performances and listen to them every day during my mom’s bath time.

The songs energize me as I complete the work, and then I know I can rest. Especially on days when my CFIDS symptoms are at their worst, the music really helps get me through it all, and my mom seems to enjoy the songs too.

Since I’m not a particularly auditory person, I’ve been surprised by the power of this music to give me a critical boost during the most physically exhausting part of my day. I’d strongly encourage others to explore music as an option to help counter the debilitating effects of CFIDS.

Name withheld at writer’s request

Keep abreast of deadlines

If you are not working because of CFIDS, but haven’t yet applied for disability benefits, make sure to learn about and follow application deadlines.

Because I was off work for three years before my doctors agreed to sign my state disability benefits application, I missed the deadline to apply and did not qualify for benefits.

Since I wasn’t aware of any deadline, I didn’t start fighting to get my doctors’ signatures until it was too late. Since different disability benefits programs have different requirements, find out early what federal, state or private benefits you might qualify for, and learn their individual requirements.

Karen M. Campbell
California

Have a One to One tip you’d like to share?

Send it to the Chronicle at The CFIDS Association of America, P.O. Box 220398, Charlotte, NC, 28222-0398. You can also send them by e-mail to chronicle@cfids.org.