Life is What Happens When You're Busy Making Other Plans

 

It all began in my freshman year of high school, a time of transition and major stress. Suddenly, my body was overcome with a heavy malaise and my muscles were constantly strained. Told by my doctors that the teenage years were a time when the body experiences "major changes", I thought little of it. However, not long after the onset of the fatigue, I began getting sick more frequently than normal. Each time I came down with a virus or a sore throat I did not register a temperature and was told by the doctor to let it run its course. In the beginning, I was diagnosed with Hashimoto's thyroiditis, a hypo-thyroid disorder, when it was discovered that my thyroid was profoundly enlarged. I thought that this diagnosis and treatment would represent the end to my suffering and was hopeful that my energy would return soon. Unfortunately, that was not the case.

During my sophomore year of high school, I took a two month sick leave and flew to the Mayo Clinic in Minnesota where the thyroid disorder was confirmed and I was diagnosed with postural tachycardia syndrome (POTS), delayed sleep phase syndrome, and “severe de-conditioning”. There was one mention of a little known disorder called chronic fatigue syndrome or fibromyalgia (seen as interchangeable by the doctor) but I paid it little thought as I was told no one knew about it and that there was no treatment. In the end, I was prescribed a rigorous reconditioning program (aka heavy exercise), given a list of ways to cure insomnia, and sent home. I went home and began working with a personal trainer (which I now recognize aggravated my condition), saw a psychiatrist and therapist, and corrected my sleep schedule. All the while, I continued to plummet downhill with the onset of new, more troubling symptoms, and missed about 30 to 40 days of school each year. I, nor the growing list of doctors that I consulted, recognized my symptoms with any particular disorder. I felt my body was shutting down and sometimes feared that what I was experiencing was fatal.

Fast forward to present day, I now know that I suffer from chronic fatigue syndrome and fibromyalgia. I have experienced many ups and downs in my symptoms over the years which vary from fatigued but functional to bedridden. I have been fortunate to have reprieves long enough to allow me to attend college and live away from home. Unfortunately, I am currently in my senior year, but have had to take a medical leave for the semester due to a reactivation of Epstein-Barr virus. Living at home and confronting this most recent downfall, I have decided to start this blog, CFS/FM: A Day in the Life, to encourage dialogue about coping with chronic fatigue syndrome and fibromyalgia. I have chosen to share my story in the hopes that it gives me some credibility to speak on the subject and make informed assumptions regarding the issues shared by those who identify with these illnesses. I am not looking for pity and recognize that there are many people out there with situations worse than mine.

I am open to discussing my symptoms and physical experience further but am more interested in discussing the psychological and social effects of these illnesses. Constantly making sacrifices, facing social isolation, and at times feeling scared for my safety due to certain symptoms, chronic fatigue and fibromyalgia have had a significant impact on my self-esteem, confidence, and sense of purpose. Along the way I have developed many coping strategies that have been helpful and that I hope may be of value to readers. In addition, I want to hear from readers about your experiences and techniques for living with these illnesses or being a friend or family member of someone with these illnesses. Each entry will contain a specific topic that I will discuss in addition to questions for readers to respond to. Thanks in advance for your interest!