I want to do a total body workout. I want to fit into my "real" clothes again, my form-fitting
and sweaters. I want my trim, fit body back. I want to be able to put on makeup and wear my hair in a
stylish way again. I want to go out to dinner, to the movies, or on a date. I want to work again and have
the career I dreamed of. I want to cook gourmet dinners for my sons, Daniel and Jonathan, and Jonathan’s
wife, Lori. I want to entertain friends and family. I want to be a part of a book club with Lori’s mother
and get to know both her parents. I want my life to be like it was before chronic fatigue and immune dysfunction
syndrome (CFIDS), but I can no longer have or do all of these things.
I have to give up what is no longer healthy for me—margaritas, total body workouts,
cooking. I have to give up what once made me proud and happy: dating, sunbathing, my closet of beautiful
clothes, and my jewelry. I have to give up the vacations I longed for after child rearing, the adventures
I had planned, and the independent life of a single woman.
To conserve my energy, I now have to do my hair in a wash-and-wear style and put on
my makeup in two
minutes. I have to learn not to be too proud to go grocery shopping without makeup. I have to wear leggings
and loose tops. I have to be careful of what I eat and resort to only the occasional glass of wine. I
have to teach my sons and Lori to cook, accepting that my sons have to prepare Thanksgiving and Christmas
dinners—and that I have to let them.
I also have to face the fact that old friends must change, too. They have to accept
that CFIDS has
permanently changed my life and that things will never be the same. They have to understand that I can
no longer fulfill all of their needs. We have to adjust our friendship, because I am now a different person
who can no longer give as I once did. I hope they care enough to make the changes our friendship now requires,
but I have to face the fact that some won’t. I have to let go of those people who cannot accept this new
me and surround myself only with those who understand my limited abilities.
I wish that my life could be like it was before CFIDS, but I have to admit that it never
will be. I
have lived through the denial, the anger, the pleading and now, I must move on to a new plateau of acceptance.
I have to say "good-bye" to old wants and some old friends and say "hello" to new friends and new adventures.
I am actually looking forward to—and accept—this new plateau. The lessons, the adventures,
growth, and all that it has to teach me. I may never be the same active Ellenlee, but I still have love.
I have taken this time to read, to meditate, to learn, and to experiment with mind-body
have gained insight into cleansing my body and soul. I have let go of my once frantic lifestyle and accepted
the calm and peace CFIDS has forced me to live. I have now accepted my changed lifestyle and activity
level. I have learned when to say "no" and to not be too proud to ask for help.
And I am finding I actually like much about this new plateau—not the illness—because
of the opportunities
it presents me with. And I ask myself: "Isn’t this what life is all about? Moving from one plateau to
another? Accepting change and discovering new opportunities?" After all, I am the same Ellenlee deep inside.
My spirit is still vibrant, my soul and personality the same. I still have my sense of humor and, most
important, I still have love to give.
Ellenlee Bare, once a self-professed fitness and nutrition guru and active mother, worked
as a medical
assistant until 1998 before becoming ill with CFIDS. She lives in the suburbs of Seattle with her three
beloved cats and near her two sons.