Perseverance was my middle name
by Joan Sturgeon, Canada

Fatigue, we all have it, even the healthy people unaffected by our disease. After years of absolute exhaustion and not knowing that this wasn't how a normal body was supposed to feel all the time, I was actually relieved when the diagnosis was made 12 years ago. The body tension, headaches, the restless nights from not being able to relax enough, caused me to dread the next day, and being unable to cope with the demands of daily living were enough to put my mental state in question. Once I made up my mind to do what needed to be done to make life tolerable I felt better.

Searching for appropriate orthotic care, using a cane and later on leg braces were all to aid in this energy conservation quest for me. Perseverance was my middle name.

The most difficult thing for me was learning to say no to people who still expected me to do the impossible. The realization that no one but I knew how much I can lift or how far I can walk, and the final realization that the only one I was fooling was myself if I continued doing these things, was quite a life lesson for me. Listening to my body as the fatigue levels rise, I now conserve energy by using a scooter when visiting tourist attractions and shopping in these mega stores. Pacing your day also helps in enjoying quality time with family and friends. Planning to shop till you drop during the day and then having to go out in the evening is not an option.Adjustment to allow others to assist in my housework was another long process of relinquishing something I loved to do.

Now, with assistance in the home, I am still smiling by dinner time, enjoy making the family dinner and enjoy the conversation around the dinner table.

On another note, I find it terribly unfortunate that some folks with this syndrome prefer to deny it and will not seek help that is out there in our communities or put the effort into getting some mobility aids available in this day and age. One of the few things I do cherish is that I have made many new friends in different organizations I belong to, since I am not too shy now to ask for the help of an arm when I need a little more balance or support.

Thank you, Linda and staff, for still giving us the opportunity to be helped in our quest for reassurance and answers with the wonderful newsletters.