My wife, Kathy, has had FM & ME for nearly 4 years now. I am her home support worker. I carry the role nearly alone as the family really doesn't understand Kathy's illness and the demands that it puts on her body and mind nor what her limitations are.

Originally Kathy was diagnosed as having "burn out" and was off work for 6 months. She returned to work for 6 months, then crashed and now has been off work for nearly 2 years. She has a wonderful physician who is working very hard with the physical and emotional sides of her illness.

Kathy's illness has certainly changed both our lives. We no longer have an active social life, we can't do physically demanding things together (go for walks, cross country ski or go shopping for a day), and travel is almost out of the question. It took me a long time to accept the fact that I can go out alone and that I must do so for my own well-being. Sitting at home and watching Kathy was dragging me down. We love each other dearly and are working very hard not to let her illness come between us.

I try to help out as much as I can and feel I should intervene at times to do things for her but I realize that Kathy must have her independence too. I can't turn her into an invalid upon whom I dote.

On a spiritual level, I find it very difficult to watch her struggle with changing her personality. She has always been a "helper" and has traditionally put others first and herself second even if that was to her own detriment. Now, Kathy struggles to concentrate more on herself and making sure that she doesn't over do it. I feel so helpless as only she can accomplish this change.

Her doctor has encouraged me not to give her instructions about her illness, the need to rest, or to harp on letting others do things for her (this would only increase stress and put even more pressure on our marriage).

Kathy is getting stronger and can cope better but she is still fragile. I find her progress is discouragingly slow; it's somewhat like watching paint dry.