Geri A.: I needed to scale back all activities, in terms of length of time or amount of exertion. For example, used to be able to garden 3-4 hours before getting tired enough to stop; now, I go 30-45 minutes, and rest 45 minutes, then maybe can do another 30 minutes.

Pat M.: I have not been able to do many things I once took for granted. … My handwriting and cognitive ability is diminished and this bothers me so much, as I always have been able to write neatly and think clearly. One of the passions of my life, reading, has changed for me. I cannot read for sustained periods anymore and I miss it dearly.

Lorraine M.: This has not only prevented me from any gainful employment, but has hampered my ability to enjoy even the simple pleasures of reading a novel, listening to music, watching a movie to the end. Forget about my favorite pastimes of skiing, dancing, and swimming, or roughhousing with my young niece and nephew. …If I push myself, as some people feel I should do, …I pay for it with days of bed rest thereafter. My relationship with some family members has suffered due to their lack of understanding of these illnesses. … I live for those days when I almost feel normal.

Stacey L.: I am so grateful today that it is not the holiday season, it is bad enough to deal with soccer season!! My entire body is weak, stiff and painful today. I woke at 5:00 AM because I had to roll over in bed. (There was a 4-year-old standing next to the bed needing me.) I could not just roll over as I used to take for granted years ago. I was in so much pain I had to force myself to move. Some days I can go shopping or clean the house but I can't always do both. I work Saturdays and Sundays and I recover all week long. The intense fatigue and pain are overwhelming… I still have to do for my children. They are young and need their mother. …we look like nothing is wrong with us, and we are glad this very ugly illness is not disfiguring, we are dearly suffering and we pay for all we do and participate in. We must prioritize every thing we do and the order it is done in. Maybe we can't come to your holiday get together because our first grader has a party at school, we can't always do both.

Grace W.: The dishes are piled from dinner the night before, I could only muster up enough energy to call in pizza for dinner, the clothes are on the couch not folded-put there 3 days ago, vacuuming has to be done-it has been 2 weeks since that was done, bills need to be written out-some of them are late, I have had vertigo and nausea for 3 days solid now with no relief… My son needs help with his homework and I can't remember what 36 divided by 4 is.

Joanne J.: I am no longer able to work at a job I loved. I am no longer able to enjoy simple things in life most of the time. … I am in so much pain, it has affected my love life with my husband as I hurt too much to even sleep in his arms at night. …I get …irritable because of pain and lack of sleep. I am lucky to have a husband, family and small circle of friends who understand, I have to break promises, or can't accept invitations to do things, go places because of my pain. …my life as I knew it has died. I have a new life now. One that although is filled with love from family and friends, is also filled with pain, and desperation.