Hi, I’m Shelby and I have chronic Lyme disease.
After 17 yrs of suffering, I know a lot about this horrible disease. I know a lot about myself and my body. I know a lot about doctors, medications, supplements and staggering medical bills. I have tried many treatments…many diets…many protocols. Having seen some of the best doctors in the country for helping treat chronic Lyme, I can tell you this: I have come a long way, but I have A LONG WAY TO GO.
During my teens I was bedridden for two years, my body so weakened by whatever was going on (it was not until year 10 that Lyme disease in my body was confirmed) that I could not sleep, eat, be in any bright lights or knock the fatigue and constant debilitating headaches that accompanied everyday life. Many friends faded away. Contact with the outside world was mostly limited to being driven around the nearby countryside for short periods of time, and even this could only be endured every few weeks because of the severe symptoms I was feeling. Deep depression and anxiety descended on me as I struggled to simply get through each hour of each day.
There came a day when I realized that the release of death would continue to evade me (and the pain would HAVE to be endured no matter what). The thought of death held no fear; however, please understand I didn’t want to leave this world because of depression or anxiety. I only wanted a break from the constant and overwhelming pain.
One day while laying in bed a curtain was drawn back from my brain and suddenly, I had an overwhelmingly deep desire in my soul: I wanted to go to college. This desire was nothing new as I had studied for years to become a concert pianist and major in Music, but I was forced to give up that dream when the keys on the piano became too hard and painful to press and my concentration levels simply did not allow me to practice the required 5-6 hours per day. At age 16 I dropped out of school. I thought college was a lost cause but suddenly, the searing fire of desire seemed to rise above the pain and suffering and I determined that NO MATTER WHAT, this dream would be realized.
I pushed myself to get out bed. I began to study to complete the last two years of high school, finishing in 8 months and receiving my GED. My constant pain and difficult symptoms had not lessened but the drive and determination to DO SOMETHING with my life pushed me on. I studied for and received my driver’s license and began the process of enrolling in college. Amazingly I was able to get a job, knowing that classes and books for my upcoming studies would not be cheap. Eventually I bought my own car and moved out of my parents home, becoming an independent adult as I struggled to work and go to school in the evenings and weekends.
This process took over three years, and the debilitating pain, symptoms and suffering worsened as I pushed my body harder and harder; however, my confidence level and belief in myself rose as I sought treatment for the Chronic Fatigue syndrome, Fibromyalgia, and other illnesses that were believed to be the cause of my puzzling illness. Year ten came and a momentous moment occurred; after many negative test results I FINALLY tested positive for chronic Lyme disease. At this point however, Lyme disease was firmly “stuck” in my body and throughout the rest of my years on earth, I will never be completely free of its grasp.
Treatments began, medications increased and supplements started pouring out of my ears. After a year and a half of living on my own, the strain on my body caused a physical break-down and my parents graciously accepted me back into their basement as I struggled to regain my health, determined not to lose my dream of completing college.
Since beginning my college studies I have been forced to drop out of school five times. I have always tried again however, even though ten years have passed and I still have not received even an Associates degree; a fact that threatens my determination on a daily basis, knowing that my dream could very possible not be realized until late adulthood.
I’m stubborn and determined, however. The daily pain level, on a scale of numbers 1-10 (#1 being the best you can imagine and #10 being the worst) hovers between a #7 and #8, and protocols have taken me through levels of hell that I pray other young people suffering from Lyme disease will never experience. My pillow has absorbed many tears and many days, I have given up on both my physical endurance and my will to survive.
I have come to realize that my continued education in the area of Lyme disease is essential to healing and that my recovery is my responsibility. PLEASE DO NOT BE FOOLED…these were hard lessons to learn and for years I refused to acknowledge the truth of these statements. Learning to balance my LIFE and my chronic LYME disease has been another hard lesson and one I continue to struggle with every day.
Life is rough with chronic Lyme disease.
My symptoms include
extreme joint and muscle pain (even wearing clothes sets my skin on fire some days),
nausea that threatens me often and causes my diet to be both limited and reduced to extremely small portions,
cluster headaches that have often reached migraine levels, causing me to black out at times,
brain fog, short attention span because of difficulty concentrating, word loss and difficulty communicating with proper sentences because of the fogginess and fatigue,
short-term memory loss,
extreme light and noise sensitivity,
difficulty sleeping (although the insomnia has improved greatly since my bedridden days),
weight fluctuation and
continued anxiety (again, much improved from my bedridden days thanks to my amazing primary doctor).
Other symptoms plague me but these symptoms are often the most severe and unfortunately, continually rising in levels of pain.
I have fought hard for my health since realizing it was my responsibility to care for myself. The realization that life would be miserable with the continued pain has driven me to seek the best treatments available with the goal that one day, I will reach the point where working, going to school and maintaining independence is possible.
I’ve come a long way. I have a long way to go.
But I’ve learned to appreciate the healing powers of a tear rolling down your cheek…the beauty of the stars at night as they twinkle and offer hope…the blessing of being able to get out of bed, a blessing that certainly is not guaranteed with Lyme…the knowledge that my determination and willingness to suffer in order to attain a greater goal is buried in the depths of my soul…the appreciation for others who have suffered as I have and the sensitivity to listen, not just talk…the ability to appreciate hard work, even if that means getting out of bed and taking a shower…the confidence in myself to go beyond my limits…the ongoing ability to release my distrust of doctors and their mistakes as human beings and place trust in those who have continued to help me…the knowledge that friendship, support, love, and a good heart are qualities beyond measure…and my final appreciation, the ability to decide to open up and share my story, a decision that has brought more healing to myself than I previously believed possible.
My dream is to complete college and receive a degree (I am constantly debating as to what exactly that degree should be). Life threatens to drown my dreams every day, but I WILL GET MY COLLEGE DEGREE, even if it takes me another twenty years.
This is my story and someday,
with this blog as a start,
I hope to reach out to countless other LYMIES and say
“don’t give up…I’ve been through those hopeless moments and overwhelming days of discouragement. Bad days will come your way as a chronic sufferer but a bad life is not sure to follow. You have the support of at least one other LYMIE in the world, one other LYMIE who can understand the horrible illness and the effects it can have on your life. Even when confined to your bed when the pain is too great, you can reach out to others in ways you may have never thought of before. You are amazing and unique. You are NOT Lyme. You are YOU.”
My rescue dog, Bella, and I on a chilly day. I would not still be here if it were not for Bella
I keep this reminder on my bathroom mirror at all times
Me, after a particularly hard day
Bella, watching out for her mommy