By Kristy Schell, Special to The Chronicle
Anyone who has seen me walking around campus has more than likely not noticed anything different about me. I appear to be a healthy, normal, and perhaps somewhat energetic girl. However, this could not be any further from the truth.
I have been sick everyday of my life for the past three and a half years with an illness called Chronic Fatigue Syndrome. Contrary to its name, which likens it to nothing more than just fatigue, it is a very complex illness that affects almost every system in the body. According to the Center for Disease Control and Prevention, CFS is as debilitating as AIDS, cancer, and heart disease. The illness consists of about 50 different symptoms, all of which I experience in the span of a month. On a daily basis my symptoms include headache, fatigue, nightmares, cognitive problems, muscle twitches, insomnia, heat sensitivity, shooting muscle pains, poor circulation, problems with balance, and a general feeling of malaise which can be compared to the feeling of having the flu. Unfortunately, the majority of chronic illness last for a person's entire life, as is the case with CFS.
I first became sick my junior year of high school after a bout of mono. I was so sick I could not get out of bed for several months and had to be fed by my mother. In addition to my current symptoms, I was also experiencing swollen lymph nodes, fever, chills, sore throat, and was sleeping 16 hours a day. I made slow improvement through the months but by the time senior year started I was still no better.
My senior year was nothing short of a nightmare, and I barely made it through. I had always been an extremely active person who participated in after-school activities like theater, and went out on the weekends with friends. During my senior year, however, I had to take a nap for four hours right after school before going to bed again at 11.
Throughout the day I felt like I had a mild flu, was so weak I had trouble walking up the stairs, and felt delirious by the end of the day. I missed 24 days of school because sometimes I would wake up and feel like my body had been run over by a truck. I lost all my friends, who I guess weren't true friends anyway, because they were'nt very understanding of my illness. While everyone went out to party on Friday and Saturday nights, I was home asleep by 10 p.m. Most weekends I was too sick to do anything but lay in bed all day.
Because of CFS, my body has an abnormal response to stress, which makes it hard for me to do the most basic things like walk up a flight of stairs. On an average day at the university I go to class, then after being awake for four hours, even after having slept for nine hours at night, my body is so run down that I need a nap.
Eating healthy is very important for me, and makes a big difference. I have to eat lots of fruits and vegetables- unhealthy eating only exacerbates my symptoms. Once a week I eat ice cream, but even after eating ice cream my body feels worse. Weekends I go to bed early because if I go out late, do any kind of physical activity, or sleep for less than 12 hours a day my body breaks down and I become more weak and lethargic: my headaches worsen, my body temperature rises, my face, bones, and muscles ache, my cheeks feel hot, and my throat and ears become sore. If I went several days living an active lifestyle I would become bedridden for a week. If I lived an active lifestyle for as long as I possibly could until I collapsed, it would result in my CFS progressing to a more severe state, permanently.
Doctors are not sure what causes CFS, but evidence points towards a possible combination of viruses, a traumatic and stressful childhood, and hereditary factors. When I was nine months old I got a herpes virus (the kind that causes cold sores on your mouth) because there was an outbreak of it in my older brother's middle school. Because I was so young, the virus wreaked havoc on my immune system. Looking back now, I exhibited milder symptoms of CFS my entire life but never thought I had anything serious.
The reason why my body developed CFS after having mono is more than likely because my body had an abnormal response to the virus and could not fight it off, but why my body could not fight it off like a healthy person's is still a mystery. The CDC has established that CFS is an immune disorder, and because of this I become sick much more often. I get infections, whether they are viral or bacterial, anywhere from eight to fifteen times a year. This year alone I had three throat infections, one of them streptococcal, in the span of one month.
Unfortunately, not many doctors know about CFS or even believe it exists. I wrote this article to educate others on my illness because it is all too misunderstood. I want people to understand the severity of this illness and the devastating effects it has on people's lives.
Being forced to give up the life I had always imagined has been sad, frustrating and depressing. I feel like a prisoner in my own body who longs to be let out. Despite every day being a struggle, and even though sometimes I want to give up completely, there is still a part of me that is motivated to get up every day, go out there and be the best I can. My illness has limited me greatly in what I can do. Of course, I have to obey my body's limits, but I refuse to let my illness completely define my life. I refuse to let it stop me from going to school, studying and speaking foreign languages, and traveling.
I am currently writing a book about my experience with CFS, and will start to submit it to editors when I graduate from the university. People with CFS deserve to be heard, understood, believed, and cared for. I cannot sit back and allow patients to go undiagnosed and untreated due to a lack of knowledge in the medical field. It is simply unacceptable. seventy-five per cent of the earnings from my book will go towards CFS research. My ultimate goal is not to cure CFS, but rather to help doctors find a medication that will increase the quality of life of CFS sufferers. Until then, the only thing I can do is fight, and fight I will.