RETURN TO TABLE
Living With CFIDS
Organize Your Illness
By Karen DeLuca Katchmeric
I used to work outside of the home seven days a week, at least eight hours a day, and
still had time
to get everything done. Then I got sick and my life was forever changed. What followed were three long
frustrating years before ultimately being diagnosed with chronic fatigue and immune dysfunction syndrome
(CFIDS) and severe fibromyalgia (FM).
Certainly, my search for a diagnosis isnít unique to people with CFIDS (PWCs), but the
allow me to put my Type A personality to good use. I use my inherent organizational skills, driven personality,
and attention to details as strategies for living with CFIDS, even from the very beginning, and it is
these valuable weapons in my arsenal for fighting CFIDS and FM that I want to share with others.
In my search for a diagnosis, I used the same organizational skills that allowed me
to accomplish so
much when I was healthy. I kept informed, reading voraciously, as I went from doctor to doctor attaining
knowledge about my condition.
I then approached my recovery with the same careful attention to detail. I set a schedule
my activities around it.
I take the same vitamins, herbs, and supplements at approximately the same time each
day. I get up
early and go to bed early. I take a warm, soaking bath each night. I wrap my neck in moist heat for 20
minutes three times a day. I eat my meals at approximately the same time each day.
My "health regimen" begins with gamma globulin, an allergy, and a B-12 shot one Friday
a month, acupuncture
and rolfing (bodywork) one Monday a month, and physical therapy and a massage every other week.
Each morning I do low-impact aerobics for half an hour. With the aid of cart carrels
and packing bags
lightly, I am able to do at least half of the household grocery shopping. I cook, do laundry, dust, and
load and empty the dishwasher. I work on the computer, but for no more than an hour or until my neck and
shoulders begin to ache. I try to do the most physically demanding activities at midday when I am least
This schedule allows me ample time to pursue personal activities on my "days off" and
periods. And although this routine seems limiting and trivial, it ensures that I never overdo it and minimizes
the chance of a relapse.
It does take some of the spontaneity out of life to be so regimented, but the reward
is well worth
it. By following my own routine, I am able to get out of bed and be somewhat free from pain and minimize
There is no doubt that others have regimens that they find helps them manage their own
what newly diagnosed PWCs donít always understand is that by organizing your activities, you can begin
to feel as if you "have a life." It may not be the "Energizer bunny life" you once enjoyed, but it is
far from being the worst it could be.
For those of you who may be severely ill with CFIDS or FM, perhaps too ill to even get
out of bed for
more than a few minutes at a time, I can only tell you that I feel your pain. There have been times when
I was too ill myself to even get out of bed or too tired and sore to do more than that. On top of the
suffering these illnesses caused, it was upsetting to be relegated to bed, able to do little more than
watch television talk shows, game shows, or soap operas.
So when I became able, I used my skills to live a meaningful life, not as a victim,
but as someone
who is still in control of her own destiny.
Karen is a 46-year-old former attorney living in Annandale, Va. After becoming ill with
CFIDS in 1992,
Karen became a home-based writer whose many articles have been published on the Internet and in magazines