October 4, 2010

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!


  1. Hi, I just discovered your blog through chronicbabe. Fatigue??? Oh boy, I've had a few days of that!! I do have medical problems that explain my symptoms, even though doctors have no clue as to a cure. Anyway, my sister has Hasimoto's and just went through an Epstein-Barr episode in March. Sis and I are a lump of autoimmune diseases, and the doctors just scratch their heads. She was recently told that she has CFS, but I think that doc told her that because he didn't know what else to say. She does not read blogs, but I am going to tell her to check out yours. I love your writing style and I am going to check your blog often. Do you have the ability to add a subscription option to your blog? If so, I would subscribe so as not to miss any posts.

    Catch you at chronicbabe. And if you would like to read my story my blog is at:

    I havent been posting much lately because of a family problem, but hope to get back in the swing of things soon.

  2. Hi Mo. Thanks so much for your comment, it made my day! The best way to follow my blog is to become a follower though blogger.com which you can do by selecting the "follow" button on the right. In addition, I just created the option of receiving e-mail updates when I post new material so if you would like to do that the instructions are now on the right side of the page as well.

    As for your sister, I can totally understand the feeling of being told you have cfs because as you said, the doctor didn't know what else to say. Unfortunately, there is no test available for cfs so it is a "diagnosis of elimination" - basically, its the diagnosis you get when they can't find anything else. It wasn't until I started researching the illness myself that I personally accepted it as a legitimate diagnosis because it felt like doctors were just giving me a label because they had run out of other ideas. My blog doesn't even begin to cover the range of symptoms I have experienced so if you or your sister have any questions or want to talk about symptoms, treatments, etc. more privately please feel free to e-mail me at cfsadayinthelife@gmail.com. Also, another great resource to look into is http://chronicfatigue.about.com/.

    I did get a chance to look at your blog and it is great! If you are comfortable with it, I'd love to add it to my resources section. Again, thanks for your lovely comment. Wishing you a peaceful day.