I first discovered the "F' word in 1988 and since that time it has been used on a regular basis in our household!!

Fibromyalgia ( fibrositis back then ) created a feeling of relief and despair at the same time. "Relief" that fina1ly a1l the symptoms I had suffered with for years finally had a name, and " Despair " because the prognosis for treatment and a cure were so bleak. I am sure that most of you have been thrqugh all the tests and multiple visits to all the specialists ( in fact at some point you begin to feel like a "professional patient")

1991 was the critical point for me, as a Registered nurse I had tried various things to remain at my career, working a steady shift seemed to help the sleep problems but other staff complained that I was receiving "special" treatment by not rotating shift ( I was working all the midnight shifts which nobody wanted anyway), then I tried to get a jobshare going but that wasn't done, so at 7pm one evening at work I sat down to eat supper and could not get up. The ambulance carried me out and I have not retumed to work smce. . The "job" (and it does become a job) of obtaining and maintaining a disability income became an education in itself. Learning to navigate the "r~d t~pe" of government and private insurance companies is stressful, demeaning, and depressing. Most people give up and this is what they count on, they actually have averages all figured out of how many people will persevere! But persevere you MUST!! ! ! Each day became a challenge, and many days I retreat to my bed depressed and discouraged. No one can imagine the pain we deal with, it is hard to describe, we look fine, but the smallest effort some days requires all our energy. I try to have a goal each day, even if it just getting showered and dressed! Now you must become very active in your healthcare. It is very important that you educate yourself about your illness and work to make your quality of life the best that it - can become. This means trying different drugs, altemative therapies and health care providers, natural supplements, and learning different coping strategies that work for you. Each person has to find what treatment is FOR THEM and this takes a lot of time and a lot of patience.My learning to deal with FM did not happen quickly, but each step you achieve gives you the energy to try something else. You have to accept that pain is a part ofyour life and live "around" it. Sometimes doing something that is fun will cause a "flare" but you decided it was worth it and are in control and prepared. One of the things that has helped me maintain my selfworth is becoming involved with a support group. In 1991 I was one ofthe founding members of our group in Niagara and 13 years later we now have 5 groups and an active Board. Giving back to others can be some of the best medicine going, helping others to a better quality of life and informing the public of our illness so that we can validate our illness to family and friends. I urge all of you to become involved. . . . we all are tired. . . we all hurt . . .. but we can all find some energy to help another. I am very blessed to have a husband and family who understand my illness in different ways but are supportive of my limitations and one of my greatest pain relievers is spending time with my grandchildren. Be assertive... .Be involved... .Be the best you can make yourself!!!

Pat, Niagara Falls, Ontario