A Personal Story
I just finished reading the CFIDS Link and wanted to
respond to the question of how CFIDS impacts family members.
My name is Taffy Todd, and Iíve had CFIDS since
the May of
1995. Iím one of those people who knows exactly when the illness started (with a
virus), and Iíve never fully recovered. In 1994 I was able to redecorate my home
and do much of the work myself. But by 1995 I was pretty useless. Iíve had some
good periods when, with careful planning, I could travel with other family
members, and Iím even working 12 to 15 hours a week now at a job sponsored by a
vocational rehab program. My supervisor understands my illness and gives me
flexibility so I never have to start work before 11:00 a.m.
This question of how CFIDS affects family members couldnít be
more timely for me. In July I went to coupleís counseling with my significant
other, who has been with me for 14 years. During our first visit he said heíd
had all he could take, that he couldnít bear the thought of another 30 years of
caretaking me. This man has been with me through good times and bad. Weíve been
together since before I became ill, through the death of two of my children and
all through my illness, and it was crushing to hear him say he could no longer
deal with what CFIDS requires of him.
Bill is a wonderful man, and I hate the idea of losing him.
And if we separate, Iíll have to leave my home. I live in northern Vermont and
wonít be able to shovel snow in winter, and I donít have enough money from
disability and my few hours of work a week to manage alone. Iíve lost two of my
children to death, and although my third is very supportive, sheís lives far
away in England. My mother is turning 90 and is supportive to the best of her
ability; my sister is so wrapped up in her own family problems and her
fibromyalgia that she can do next to nothing to help me.
My most recent relapse lasted three years, and I spent another
year climbing out of it to the point where I could consider a part-time job, But
I still need to rest on the days I donít work, so I accomplish very little at
home, and Bill has to do more than his fair share. Iím on Modafinil, which I
take every morning at six oíclock, improving my physical functionality enough to
go to work at 11:00. Even with the medication, which helps immensely, Iíve never
been able to get back to the level where I could have a normal life. I keep
hoping each relapse is the last.
Since our first session of counseling, things have improved
with Bill. Just communicating honestly about the toll the illness is taking on
both of us helped. Weíre still together two months later.
I have rambled about my situation, but I needed to tell
someone that CFIDS may yet destroy a fine relationship, even though we are
working to prevent that. There are many reasons to hate this illness, but having
friends and loved ones turn their backs on you has to be one of the most
devastating effects of CFIDS. Thanks for listening.