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My Story as a 23 year old with CFIDS and FMS
First of all, I would like to tell you what made me decide that I wanted to build this site. At 23 now, looking
back to when I got sick at 16, is very hard for me. The reason being that no one believed that there was
anything wrong with me. I felt at that time in my life like I had no support system. I do not want all of you to
feel that way. My goal in life is to make sure that everyone that reads my site, leaves here knowing that there
is hope and that you are NOT alone. CFIDS and FMS are very confusing illnesses and people who are not
sick with them do not understand how people who are sick with them feel and what they go through from
day to day.
One of the main points that I would like to make is for people with these illnesses and there families. I want
people with this to know that they are not crazy! I went to so many doctors, trying to find out what was
wrong with me, and none of them would take me seriously. I began to doubt my own sanity, because
everyone around me, either thought that I was lieing or nuts. When I was finally diagnosed, in June of 95' I
was partly relieved, because now I had a name to put with all this crazy stuff that was going on inside my
body.
Then, on the other hand, I was terrified because I was told that I could not work, I had to quit collage, and
that I should not have children. I felt like my life was over! Still though it had a name, no one understood it.
A few days after finding out what it was, I went to the library to try and find some information on CFIDS
and FMS. There was not a lot of info on it but I did find a book named "Running on Empty", when I read it
and realized that the lady who wrote it had gone through the same thing that I was experiencing, I just broke
down. I was not alone.
I get mad sometimes that I am only 23 and have so many years ahead of me. I get mad at this stupid disease
and how confused it can make me. I've have a lot of neurological damage over the last four years. It's not
funny when something is messing with your brain. At one time I could remember dates, places, names, or
anything, now I am lucky if I remember what day it is or my last name. I know that sounds extreme, but it is
true.
One day I was going to the library and I got lost because I could not remember how to get there. These
were streets I had known all of my life, like the back of my hand. Yet, that day, they looked foreign to me, I
might as well have been in Pakistan or on the moon! That is such a devastating feeling, and this was in my
own home town!
I have had trouble with the check book too, I use a calculator now, because I'm so bad with numbers.
more to come soon.
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