Sunday, June 07, 2009

CFS Personal Story/Call for Action

A must read....

When months went by and I did not seem to fully recover, I went through a myriad of tests and skeptical doctors before (2 years later) I had an official diagnosis: CFS. I remember the first time a doctor suggested it to me. “You might have chronic fatigue syndrome,” he said. “Some people develop that after severe cases of mononucleosis.” The funny thing was, I didn’t realize at the time that he was actually diagnosing me with anything. I thought he was just telling me what I already knew: that, following mono, I had become chronically ill and exhausted. It wasn’t until another doctor brought it up again that I realized that was actually a name for an illness. “I feel way too sick to have something called chronic fatigue syndrome,” I told her.

But, as it turns out, as ridiculous as the name is, CFS is a real and devastating disease. Also known as chronic fatigue immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (M.E.), it is currently classified under the World Health Organization as a neurological disease. It also affects the immune, endocrine, and other organ systems. The CDC recently acknowledged CFS as a real and serious illness that can be as debilitating as multiple sclerosis, late stage AIDS, chemotherapy treatment, COPD, and end stage renal failure. CFS also afflicts at least one million people in the U.S. Some estimates have it at over 4 million.

Yet, despite this, CFS is still one of the least funded of all illnesses in the United States. According to the CFIDS Association of America, more money was spent studying hay fever last year than on CFS.

Due to such limited funding and research, to date there are very few treatment options currently available for CFS (none FDA approved), and much of what is available is primarily trial and error. I have spent my entire life savings on various treatments to try to get well. Thus far, none have worked, and many made me worse.

I have always been a very determined person, often to a fault. I went back to work the very morning I woke with my temperature just barely below 100 degrees (3 weeks after onset), though I otherwise was not much improved. Clearly, it was too soon. Within a month, my 104 fever was back full blown, and I was out of work for another 3 weeks.

Following that setback, I was able to push myself to continue working full time for the next few years; however, it was not without great difficulty. I often had to rest in my car during my lunch hour, and went straight to bed upon getting home. I was running my body to the ground, and though I knew this, I did it anyway. I was of the mind-set that I could push through anything, and that with enough perseverance, I would eventually overcome.

Not so. I learned the hard way (and I am still learning) that CFS does not reward that kind of forced perseverance. After years of pushing my body beyond its capacity, I had a setback (known in the CFS world as a “crash”) so severe I ended up housebound and had to quit my job. Not long after that, I had a crash that left me bedridden and unable to speak above a whisper. That was 9 years ago. I have spent what was supposed to be the most vital years of my life sick, barely able to speak and confined to my bedroom.

Lest you think I have merely fallen into some kind of depression or given up, I assure you I have not. I am not depressed, and I still fight to overcome my obstacles every minute of every day. In many ways, I fight harder now than I ever did before. It is for that reason that I write and share this with you today.

As most of those stricken with this illness, I was previously a fully healthy, energetic, ambitious and well educated young woman (just 24 years old). I graduated magna cum laude with a B.S. in psychology from Tufts University. I worked in human resources, first at an internationally known publishing company in Boston, then at a state university. I traveled extensively in my youth, including a year abroad in London, during which time I back-packed through Europe for a month at spring break. After college, my friend and I spent nearly 2 months driving 6,000 miles across the United States.

I love to travel. I love to learn. I love to draw and read and spend time with friends and family. I love photography and the outdoors. I love to dance. It's not that I no longer want to do these things. It’s that I can't.

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