Joan G.: It is difficult for me to work in an office. There is always someone wearing perfume, using deodorant soaps, perfumed hair products, strong smelling laundry soaps, and/or fabric softener. I am ostracized immediately when I inform my supervisor/boss of the problem. I lost a job since my airspace was polluted by my supervisor's cologne and my boss's perfume. I was unable to tell them since I became faint and nauseated when I was near them. When the "safety monitor" found me incoherent and on the verge of fainting, I was sent home with a "Worker's Compensation" claim. I was fired without cause shortly thereafter.

V. Waters: I can't even prepare a decent meal without catching the kitchen afire (Have you ever seen someone fall asleep while cooking and set fire to soup - on an electric stove, no less?). Some of my closest family understands that I can't participate in family functions any longer, but most can't identify with a life that has become as limited as mine. It hurts to think that they could possibly believe that anyone could prefer this sort of small existence. I'd gladly be out working full-time and visiting with family and friends, instead of spending day after day considering it a major victory if I can eat 3 meals and get out of my bed to brush my teeth, wash my face and change out of my nightgown. It would be heaven to be able to go to a store or eat in a restaurant.

Bob M.: I was on my honeymoon in Lake Tahoe in Incline Village in March 1986. It was six months later that I became ill with a virus and I have been ill ever since. … I have never been able to maintain any kind of steady employment since the start of my illness. And I am now on disability making $984 a month instead of my income of $85,000 that I had made the year prior to my illness… CFS is a real illness and I believe we must take it one day at a time.

Steven D P.: I can seldom go out socially because of the combination of pain, weakness & inability to maintain cognitive clarity. Also, going out for more than a short time will cause the above problems to increase greatly for the next two or three days so that I am bed-bound most of the time. Even talking on the telephone is difficult to maintain so that I can't renew relationships by phone because talking on the phone is exhausting (trying to keep up with the energy level & cognitive abilities of the person I am talking to).

Colleen S.: Living with CFIDS & FM has forced me to re-evaluate my priorities in life because of the dramatic reduction of energy available to basic living, in addition to intermittently being incapable of higher brain function and constant pain. Some days the available energy is only enough to shower or make food to eat, but not both. These limitations have given my life a different rhythm . … One day of activity must be balanced with one to two days of complete bed rest is my formula. I have also evaluated all of my activities for net energy gain or loss. ... Negative people, negative thoughts - including anger & resentment - have no place in my world because the effect on my health is detrimental. Physical pain is a harsh taskmaster but its gift to me has been maturity, acceptance and peace with myself and others.

Within my small energy envelope, I accomplish those things that make life still worth living. My job is to take care of my sick body the best I can with good nutrition and an exercise regime that doesn't make my symptoms worse. ... Despite my memory lapses, the difficulty I have concentrating and absorbing new information, I forge ahead hoping my failures are forgiven. I have developed a wry sense of humor, which I must often turn on my own idiotic stumblings.

Tom F.: It's difficult to see your partner bedridden for most of the week. The time together grows shorter as the condition worsens.