An avid mountain biker, skier, golfer and most other outdoor activities until 1999 when I became too ill. I am now mostly bedridden and dedicate any “up time” to CFS/ME advocacy, awareness and education for the Rocky Mountain CFS/ME & FM Association. I want to do everything in my power to make sure that the next generation doesn’t have to go through what I have.
All my life, I’ve imagined myself doing something amazing to help others, whether my career be a veterinarian, marine, doctor, or even a psychiatrist; I never thought a “simple” bout of strep would turn my world upside down. What was initially deemed as “post- strep arthritis” turned out to be a devastating disease that took five years to diagnose and would leave me unable to enjoy my previously active life. Before chronic fatigue syndrome took over my life I was fully enjoying my middle school years; especially band, which was my favorite past- time. I am now unable to attend school, hang out with my friends, or attend church functions, and spend most of my days in excruciating pain lying in my bed wishing I were better.
Since I became ill so young, this illness has dictated most of what I could and could not do for my entire adult life. I have very little memory of what things were like prior but was very fortunate in that until a few years ago it was taking a relapsing/remitting sort of course. Most of my time with this disease was spent without the benefit of any sort of professional healthcare due to poverty caused by relapses and a general lack of medical knowledge surrounding my condition.
Because of this illness, I am now largely socially and educationally homebound, as well as having to pace myself and use a wheelchair in order to conserve energy; minor exertions of physical or mental activity now impact my ability to function in daily life. In order to accomplish the things that I am still able to do, I have had to forfeit many of my goals and learn to live without a lot of things that are just unobtainable for me right now. The lack of awareness and staggering amount of ignorance surrounding this illness further complicates an individual’s ability to cope and function in society.
I lost the prime years of my life to a confounding set of symptoms that went undiagnosed and untreated for too many years. I lost the joy in raising my children as my life became about survival rather than nurturing. I lost my connection to community as I was no longer able to participate in social activities. I lost my music and my art, and my ability to spend time in nature. I lost my sense of self when it was inferred by my doctors, my family and my church that somehow I was at fault. Although my world has become small and circumscribed, I retain my ability to dream and to hope and to reach out to others who are living with this debilitating disease.
This illness swept my old life away as I had to give up all the activities I loved: my profession, my social life, my ability to travel, just to name three. I spend most of my days on or in my bed. From there, I’ve written a book called “How to Be Sick” to help others with CFS/ME; it was published in September. Despite the book’s theme, which is that we can find joy and fulfillment despite this devastating illness, I’m determined to continue the fight to find the cause of CFS/ME so others don’t have to suffer the way I and millions others have.
The Invisible Awareness website shows many people afflicted with ME/CFS.