My Before and After Story
By Becca Brasfield,
Most people define their lives by big before and
after events like graduation, marriage or the birth of a child. My life
is defined by before and after I became ill with CFIDS.
Before, I was happily married for 16 years, had a good career
in the technology industry, had lots of friends and enjoyed many interests. My
husband, Jim, and I took weekend shopping trips, lived in a nice home on five
acres in a semirural area with lots of wildlife and enjoyed our many pets. I was
intelligent, quick to learn and analyze, easy to get along with and healthy. In
short, I was leading a very good life with the man of my dreams.
My illness began in 1997 with a growth on my thyroid. It is
now debatable whether the CFIDS caused the growth, or the growth and subsequent
treatment (radioactive iodine) triggered the CFIDS. Either way, I went from a
100-mile-per-hour person to a dead stop. I won’t relate what I went through to
get a proper diagnosis and then disability—it is still too painful to relive.
Writing my story is hard enough.
I spent the first two years sicker than I had ever been in my
life and bedridden 90 percent of the time. On top of feeling like I had a really
bad case of the flu, I felt as if I had been run over by a truck. I was
exhausted to the point of not being able to lift my head off the pillow. I
couldn’t think, my brain “shook” all of the time, I couldn’t read, I couldn’t
remember things, I was in constant pain and I could barely talk or move. Working
was totally out of the question. The mental and emotional confusion, anger, loss
and uncertainty of any progress was devastating.
Other people don’t know how to react to my being this sick,
except to silently say, “Thank God it isn’t me.” With most illnesses, you find
out you have it, doctors offer some kind of “cure,” you live through it and get
better or you die. Believe me when I say that dying often seems preferable to
living with CFIDS. Friends and family tried to understand, but they want to hear
that I am getting better or doing something—anything—to “get over” this. They
don’t believe there is nothing that can be done. We didn’t either.
I am so fortunate that Jim has stood by me, taken care of me
and continued to love me through all of this. I thought we were close before,
but this experience has brought us even closer. We truly know what “for better
or worse” means. We had always been partners, but we shifted from being
independent in our own way to my being totally dependent on Jim for
Over a period of months, I finally began to feel a little
better in spells. I’ve had to relearn how to use a computer, which had been the
center of my career for so long. I could sit upright a little longer, talk a
little better and read a bit. But I would push myself to do things and end up in
worse shape than before, often taking weeks to recover from one day of
overactivity. I feel okay and then it’s like someone flips a switch. One minute
I can think, the next I’m totally confused. One minute I’m moving, the next I’m
exhausted beyond belief. One minute nothing hurts, the next everything
It was a long time before I finally accepted that I was not
going to get well anytime soon and that life as I knew it was over. I was going
to have to adjust to this new life, much as I hated it. I had to try to get
better or at least live with the symptoms and the limitations my body and mind
now placed on my life.
Since the doctors didn’t have the answers, it was up to me to
try and find out as much as possible about this illness. I began reading (in
small spells) everything I could find about CFIDS. I began a specialized
vegetarian diet and taking more than a dozen vitamins and herbal supplements. I
began a program of very mild exercise (too much makes me feel much worse).
Low-tech pain relievers like heat for muscle pain and cold packs for headaches
and throat pain also helped. Jim and I both watched for the signs that I needed
to stop and rest instead of pushing on and feeling miserable.
After embarking on this new life with CFIDS, I try to make the
best of my limited energy and ability to concentrate, which lasts for only about
25 percent of the day. Out of necessity my world has shrunk to the things I can
manage to do in that short time frame. In my new world I communicate with
friends and perform tasks that require concentration or physical activity very
early in the morning, before the exhaustion sets in.
I make notes of things I must remember to do or what I am to
tell someone the next time we talk. I also make notes of characters while
listening to books on tape so I can keep up. Short-term memory loss has its
advantages though. I can watch movies I’ve seen before and since I don’t
remember how they end, it’s always a surprise! We only meet friends for lunch
because I can’t be out or up in the afternoon and evening. I can’t plan to be
away from home two days in a row and someone, usually Jim, has to drive me most
I try to take pleasure in simple things like seeing
hummingbirds, playing with my cats, watching the fish in our pond, getting
vegetables from the garden or watching rabbits play in the yard. I feel proud of
the things I did manage to do today instead of worrying over the ones
that I couldn’t. It’s pretty hard to maintain a friendship with someone who
can’t communicate with you or meet very often, so e-mail has become a great way
for me to stay in touch.
I often remind myself that no matter how bad this seems,
things could always be worse. There are a lot of people out there who are also
suffering. I am grateful for what I do have and make the most of small
victories. But it doesn’t mean I don’t want to be well again. People often say
to me, “I don’t know how you do it,” and my reply is, “You have no choice if you
want to live.” And I do. I’m not giving up the fight until a cure is found for
all of us suffering from this debilitating disease.
It hasn’t been easy, but I’ve managed to write this story a
little at a time. If my story helps just one person who doesn’t understand CFIDS
gain a little knowledge or helps another PWC realize they’re not alone, then
it’s been worth it.