Kristy Burton-Vunesky went from volunteering in New Orleans in the aftermath of Hurricane Katrina to dealing with the aftermath of her own CFS diagnosis.
Personal Story: Kristy Burton-Vunesky
A little over a year ago I was an active, driven and successful woman. I was a single parent with two children, a full-time college professor and a full-time doctoral student with many hobbies. I exercised nearly every day; walking, running, strength training, yoga, Pilates and various dance classes kept me active and in shape. My fiancé and I loved to hike and bike, and our family would go camping and canoeing every summer. I loved the outdoors and spent as much time outside as possible. When I wasn’t outside I was seeing a play at a local theater, going to the symphony or opera, or going to the movies, art shows, craft fairs or whatever struck my fancy. I never sat still. I was always on the move. That all changed drastically in March of 2006.
What led up to this drastic change began in October of 2005 when I was volunteering after Hurricane Katrina. I’d been deployed with the Red Cross to New Orleans and was working in the Ninth Ward and St. Bernard Parish, providing mental health services to hurricane survivors. The days were long, and the conditions were harsh. I lived in a shelter with about 100 other volunteers, and we worked 12 hours a day. I loved what I was doing. I felt useful, like my life had meaning and purpose.
On day 5 of my 2-week stay I woke up to find that my face was swollen. I saw the staff doctor and he said it was likely a mold allergy. They moved me farther from the mold growing in the shelter, and things cleared up. I continued my work and didn’t think much more about it. Then on day 12 I woke up so exhausted I could barely get out of bed. I decided to take the day off and sleep. I knew I needed the rest. I hadn’t had much time to myself, and the long work days, crowded living conditions and lack of sleep were getting to me. I enjoyed my day of rest and went back to my routine the next day. I left Louisiana 2 days later and went back home, back to my life.
Once home I jumped right back into my old routine. I went back to my mothering duties, worked full-time and continued with my doctorate in psychology. I continued to exercise and remained active in all my usual ways. Something didn’t seem quite right because I was quicker to tire than I had ever been before, but I chalked it up to stress and too many responsibilities. I kept going.
Through the fall, winter and into spring I suffered from recurrent sinus infections that antibiotics did little to help. Then in March I got really sick, and I ended up in the emergency room so dizzy I couldn’t even stand up. The doctor there gave me a steroid shot to reduce the inflammation in my ear and sent me home.
Two weeks later I was in the hospital. I couldn’t walk. My legs didn’t want to go. I felt like someone had put a thousand-pound lead suit on me. I couldn’t raise my arms to brush my hair. I couldn’t talk because it took too much effort. I couldn’t swallow, my vision was blurry, I was dizzy, I had a strange rash on my arms. I felt sure I was going to die.
The doctors ran every test known to man. Nothing. How could that be? How could I be that sick and they find nothing wrong with me? After three days they sent me home with follow-up appointments and visits to specialists. Over the next seven months I was poked and prodded and subjected to some pretty painful tests including a muscle biopsy. The diagnosis went from myasthenia gravis, to multiple sclerosis, to hypokalemic periodic paralysis, to polymyositis, to a brain tumor or possible cancer. I wasn’t getting better, yet no one could find what was wrong. I was convinced I was going to die of some mysterious illness and even saw a lawyer and wrote my will. Finally, after months of agony, I was sent to a neurologist at the Mayo Clinic in Rochester, Minnesota, and was told I had CFS.
I was crushed. How can this be? How can that be my diagnosis? Doesn’t that just mean you’re tired? I am so much more than tired. I can’t possibly have chronic fatigue syndrome. I don’t even sleep very well! What do you mean there’s no cure? As I sat in that doctor’s office, tears streaming down my face, my mind raced with these thoughts and so many more. What did this mean? What was going to happen to me? There were no answers.
For months after the diagnosis I refused to believe it. I wouldn’t even talk about it or tell anyone. I refused to read anything about it. I just knew the diagnosis was wrong. I’m only 39, I would think. This can’t be my life. There has to be something else wrong with me. Something they can fix. How had I become this person who could no longer shower on her own, could barely get out of bed, and was almost completely reliant on others for her care, yet the doctors were unable to treat me effectively? How could not one single test show what was wrong with me? I was angry and I was in denial. I wanted answers and treatment. I wanted to get better.
Time has gone on, and it’s now almost a year and a half since my trip to Louisiana. Almost a year since I became completely disabled. I’ve finally started talking about my illness. It has been very healing to talk about it. I’ve told my family and friends, and I’ve started a blog about my experience. I’ve finally begun the long journey of acceptance.
But as I accept what’s happening to me, I refuse to become complacent. I may be sick and my life may have changed dramatically, but this illness cannot change who I am or what I want in life. It may alter what I can do physically and even mentally at times, but it can’t change my hopes, my dreams, my desires or my soul. I’m a fighter. I will fight this disease and I will win. Winning may not mean that I recover, but it will mean that I will go on living, and I will live life to the fullest. I will continue to enjoy my family. I will find new ways to be active with them and on my own. I will complete my doctorate. I will find ways to feel productive and fulfilled. My life will have meaning. I will fight.
Kristy Burton-Vunesky is a wife, mother of two, college professor, psychotherapist, doctoral student and CFS survivor and fighter. Her blog website is at http://mybattlewithcfs.blogspot.com.