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“Couple struggles with disease of lost
Dawna and John Beausoleil are a married couple who both
have CFIDS. Dawna writes about how the illness has affected their lives over the
It was the worst bout of flu I ever suffered. For some reason,
I never regained my strength. Waking in the morning was like coming out of
anesthetic — and walking uphill, more like surmounting Mt.
I returned to teaching that fall. A specialist said I’d
developed massive allergies that might be responsible for the fatigue. I taught,
ate and slept, day after day. Quitting my job was not an option. Fear became a
real part of my life, but rational ones got all mixed up with irrational
Several years passed with some improvement. I met and married
my husband, John, and we moved to Ontario,
Canada. It was there that
my body just broke — mentally, physically, emotionally and spiritually. Life was
a series of nightmares, hospitalizations, panic attacks and depression, all
while trying to act the part of a pastor’s wife. I was obsessed with the belief
that I must work. But even occasional substitute teaching became too much, so I
finally started delivering flyers a few times a week. John begged me to quit
because he ended up doing the job for me. He was so kind and patient and took
over most of the household chores. But more importantly, he assured me that he
loved me just the way I was.
After seven years, with the help of endless doctors and
therapists, I felt better emotionally. A diagnosis of CFIDS during this time put
a handle on my fatigue and now I was ready to tackle life again.
But fate was about to twist a nasty knot into our lives. John
had experienced recurring bouts of flu for several years. Each time it took
longer for him to recover, until in 1997 he never picked up again. He returned
to work, doing what he could, but that was less and less as months went by.
Finally he was diagnosed with CFIDS as well. By February he had to quit work and
start the long fight for disability.
Five years have passed. We have enough pension to live
comfortably. We have built a small cottage designed to fit our unique needs.
It is easy to keep clean and things are arranged for minimal
But the days can still be agony. When we both hit a low, we
lie in bed and wonder what will become of us. Will we just die here unable to
take care of ourselves?
Mostly, though, we practice being upbeat. Playing Scrabble is
good for mental stimulation. Jigsaw puzzles are fun. In the summer I do flower
gardening and John has a vegetable garden. We were given a big white Malamute
dog that takes us on walks and shares lots of love. Television is good for
learning or just for a laugh and reading is a favorite for both of us. I sing
occasionally at a local church. We work at being happy and are usually
Living with CFIDS is a process of acceptance and adjustment.
It is a disease of lost dreams and desires. And it can be a long grieving
process. It means enjoying past photo albums when I’d rather travel. Or giving
away beautiful fabric I bought 10 years ago, or skis I never use, or a guitar I
never learned to play. It is braving each loss as my life scales down long
before its time. It means using powdered garlic and onion instead of fresh. It
means taking things in small doses and learning to cherish each moment. But more
importantly, it means doing something for someone else each day. If I can’t
reach out physically, I can send a card, and if not that, I can offer a prayer
from my bed. Reaching out is the greatest lesson I’ve learned. It blesses both
the giver and the receiver.