TO TABLE OF CONTENTS
One To One
Tips, strategies, ideas and
helpful thoughts about CFIDS
Explaining CFIDS to others
sick for 16 years. I live in a small town and when I bump into former colleagues
or neighbors, they assume Iím cured because I "really look great."
I reply, "If I werenít doing pretty well today, you wouldnít
have seen me. Iíd be in bed."
Others ask, "What exactly is wrong with you?"
I say, "I have CFIDS/ME."
"Doctors arenít sure. Something is the matter with my immune
system. I feel like Iíve got a terrible case of the flu all the time, and maybe
I do. Iíve 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. "Iíve 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
Music can boost energy
As a long-term
CFIDS patient and an Alzheimerís 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, Iíve found a certain
type of music quite helpful. While most contemporary music is not for me, Iíve
discovered the powerful and beautiful voice of Clay Aiken from American Idol. I
taped his performances and listen to them every day during my momís bath
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
Since Iím not a particularly auditory person, Iíve been
surprised by the power of this music to give me a critical boost during the most
physically exhausting part of my day. Iíd strongly encourage others to explore
music as an option to help counter the debilitating effects of CFIDS.
Name withheld at writerís request
Keep abreast of deadlines
If you are not working because of CFIDS, but havenít yet
applied for disability benefits, make sure to learn about and follow application
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 wasnít aware of any deadline, I didnít start fighting
to get my doctorsí 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
Karen M. Campbell
Have a One to One tip youíd like to
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