Accepting the New Me
By Margaret Robertson
My struggle with CFIDS began eight years ago with what I
believed was a bad case of the flu. After about six weeks of battling flu-like
symptoms I felt better. A year later the flu returned with a vengeance.
Over the course of the next few years the symptoms would
intermittently return, so I finally visited my internal medicine doctor for a
checkup. After administering a few tests the doctor said I was fine. I knew that
wasnít true, so I changed my primary care physician and began the process of
visiting numerous doctors and having tests done. I went from rheumatologist to
cardiologist, from neurologist to urologist. I was tested for lupus, Lyme
disease, thyroid problems, diabetes, rheumatoid arthritis and multiple
sclerosis. All of the tests came back normal, and I was told there was nothing
wrong. Antidepressants were suggested and tried, but there was no improvement in
my condition. I also received a great deal of advice from well-meaning family
and friends who thought I should get out more, push harder and try not to think
about myself so much.
My symptoms are extreme fatigue, weakness, night sweats,
swollen and sore lymph glands, faintness and occasional headaches. The least bit
of exertion leaves me totally drained, and rest doesnít restore my energy.
During the search for a diagnosis I dealt with other health problems as well,
including two cataract surgeries, gall bladder surgery and shingles.
In the third year of my illness I became
desperate for a diagnosis and made an appointment with a doctor at
. After waiting months for an
appointment, I saw a very nice doctor who examined me and did a large amount of
blood work. On my return visit the doctor informed me that I had tested positive
for Epstein-Barr virus, which in turn had caused me to have chronic fatigue
syndrome. He felt that I was recovering and would eventually be alright.
Although it was a great relief to have a diagnosis, the doctorís prediction that
I would recover was incorrect.
My life has changed drastically. The hardest part of this
illness has been accepting that I am a semi-invalid. I cannot do the things I
used to do and would still like to do. I went from being an active person with
many hobbies and interests to someone who seldom drives a car, barely manages to
grocery shop and infrequently attends church. The days of luncheons and club
meetings with friends or shopping at the mall are rare. For the first few years
the ďspellsĒ would go into remission, and I could be more active. Then without
warning I would become too tired and weak to leave the house. When I first
became ill my husband was retiring and we looked forward to traveling.
Since then many trips have been planned, but we usually end up unpacking our
bags because Iím too ill to travel. My husband is very supportive and heís
helpful with heavy housework and shopping when necessary. I get dressed every
day, manage to prepare our meals and do laundry, but it takes a great deal of
effort to accomplish these tasks. I am an avid reader, which helps fill my time.
I also enjoy painting, but sitting at an easel is extremely tiring.
Unfortunately my friends tend to forget that I would enjoy
their visits and phone calls, and that Iíd like to keep up-to-date about whatís
happening in their lives. This illness is difficult for them to understand since
I look well when they happen to see me at the grocery store. They just donít
realize that Iíll spend the rest of the day in bed recovering from that short
trip to the market.
CFIDS is an illness I donít understand either. Iím always
hoping that tomorrow Iíll feel better and that Iíll be able to do more. In the
brief times I do have more energy, I overdo it by trying to catch up on those
things that have been left undone. Iím fortunate to have a supportive family.
And Iím grateful that this illness didnít strike when my children were young and
needed me the most.
I am 73 years old now, and I know I probably wonít make much
of a recovery. Even so, I do hope that research will be done to find a cause and
a cure for CFIDS in time to help so many others who are suffering the effects of
this terrible illness.