My struggle began in high school when I had mononucleosis caused by the Epstein-Barr Virus (EBV). I had at least 3 EBV reactivations and continuous chronic symptoms over the next 15-20 years while I was graduating college, having 4 kids, working full-time and part-time as a mechanical engineer, and balancing our busy family schedule as a wife, mother, employee and friend. I’ve struggled with excessive fatigue, unrefreshing sleep, headache, congestion, reoccurring sinus infections, sore throat, laryngitis, stomach pain, body aches, neck and back pain, shortness of breath, brain fog, memory loss, cognitive disfunction, and ear infections since high school. I’ve been in and out of the ER, had surgery to remove my appendix, stomach scopes, colonoscopies, and repeated tests, taken endless medications, seen every type of doctor multiple times, spent thousands of dollars on medical bills, and been gaslighted and dismissed over and over.
Despite this rejection, I always knew something was seriously wrong. Six years ago, my health took a significant turn for the worse. I had 10 sinus infections in a row over 18 months with a long series of antibiotics and steroids that weakened me to the point that I could not work. I had surgery for a deviated septum and after that, all of my symptoms increased in severity and started to impact my function and mobility. I went gluten free, dairy free, egg free, low FODMAP and kept removing things from my diet in an attempt to address chronic pain, IBS-C, and a C-diff infection, but I still gained 50 lbs in a little over a year. I did my own research and actively pursued specialists, therapists, and dietitians based on my symptoms. I was finally diagnosed with Fibromyalgia in December of 2019 and tried various therapy treatments to help with the pain and fatigue. Despite physical therapy, massage, heat, medication, diet changes, stress reduction, talk therapy, relaxation, sleep, graded exercise, and everything recommended to treat my symptoms, my body kept feeling worse. Unfortunately, my symptoms continued to increase due to post exertion malaise from trying to keep up with my life and the excessive stress. I decided to go to a ME/CFS specialist, because I could no longer get out of bed or walk. I was finally diagnosed with ME/CFS in February of 2021 after suffering for over 25 years. Now I am mostly bed bound, unable to work and participate in activities with my family, and I have the heart of an 80 year old women, which severely limits my mobility.