When Alice asked me to write a testimonial about the effect my illness has had on my life I was somewhat hesitant because of “baring my soul” to everyone.
My illness goes by many names: Fibromyalgia, Chronic Fatigue Syndrome, Chronic Fatigue Immune Dysfunction Syndrome, etc. Whatever it is called, it has had a devastating effect on my life. I have gone from being an energetic, alert, productive, healthy person to someone who can barely get out of bed some days to use the bathroom. This illness has robbed me of my self-worth. I can never make plans to be with others since I never know from one day to the next how I will feel.
in the medical profession will not acknowledge that FMS or CFS exists.
These people need to be educated about the devastating effects this
illness has on its victim.
have had symptoms of this illness as early as 1976 when my symptoms were
diagnosed as “nerves.” I was told that my symptoms were psychosomatic; they were
because I had children at home; they were because I was suffering “the empty
nest syndrome.” The list
goes on and on.
In 1986 I was diagnosed with
Fibromyalgia. I had been having a great deal of trouble with fatigue and
aching all over. When walking and
then stopping, I had the sensation that I was tipping over forward.
While sitting in a chair, I felt I was falling sideways.
Riding an elevator caused dizziness and disorientation.
I had headaches and began experiencing trouble with my vision.
I found that I could not tolerate alcohol.
Heat and humidity caused distress. I
was so tired I could barely function. Smells
and odors bothered me. I started
suffering from irritable bowel syndrome. I
was tested for diabetes, hypoglycemia and multiple sclerosis and tested negative
for each of these conditions.
Although I was experiencing all of
these problems, I continued to work. Towards
the end of the 1980’s my symptoms seemed to go into remission.
I was still experiencing the aching, but the fatigue wasn’t as bad.
I felt well enough to go back to school to retrain in the use of
After finishing school, I
immediately found employment and continued to work until the fatigue and pain
returned with a vengeance in 1995. In
August of 1995 I took three weeks of medical leave to try to regain my health
When I returned to work I immediately lost any ground I had gained while
on leave. In September, I decided
to quit my job because I could no longer function in a productive manner.
I have been married to Elaine for nearly thirty-one years. At the time of our marriage, Elaine was a very energetic person. Today she is afflicted by something that makes her a very different person.
condition keeps her from working because it causes complete exhaustion.
On bad days she does not get out of bed, bathed or dressed.
On a good day she can get up, bathe, dress and drive downtown (about
three miles). If she does some
shopping, just because she feels
good enough to get out of the house, she will be in bed the next day or
sometimes for several days.
has headaches as well as a dull achy pain throughout her body, feet, legs, back,
arms and neck on a daily basis. She
also has a numbness of the limbs and a fog that settles over her mind. Her
conversations often have unrelated words in them and her memory will lose
thoughts and facts.
her last job Elaine had trouble driving to and from work and trouble walking
from the parking lot to the work station in the building.
After work she would get home and make
it to the sofa where she would be two hours later when I got home from work.
Most of the time I would buy something for the evening meal and Elaine would be
in tears, or nearly so, trying to figure out how to get enough rest to make it
through the next day.
In conclusion, we no longer make any long-range plans but try to take one day at a time. We no longer dance, which was a favorite activity of ours. Neil has taken over most of the housework, shopping and what we call “hunting.” In the old days the men of the family used to provide the food for the family with hunting. Our modern version of “hunting” is for Neil to go to Subway, Pizza Hut or Taco Johns to bring food back for our evening meal.
It helps if you can look at things in a humorous way. When I walk into doorways, blurt out words that make no sense, forget what I’m talking about, etc., it helps to try to see the humor in it.On good days I do genealogy research and work on projects for our support group. I would advise anyone suffering with this type of illness to become involved with a support group. It is wonderful being with people who understand your problems. I also chat with my friend Alice through e-mail. She founded our support group and has helped me get through many a difficult day. Thank you, Alice. …Elaine
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