I have always been a very curious individual with a strong desire to learn. I’d drive everyone crazy with my constant question of “why?”
I was born in 1988 and enjoyed a pretty normal childhood. During elementary and middle school the single most important thing to my friends and I were video games, and the 90s were an exciting time where technology was really taking off. Within a decade, game graphics went from a pixelated mess that required a lot of imagination to decipher, to realistic 3D experiences.
Being my curious self, I wondered how they were made and decided I could make them, too. I had an old DOS computer where I would program simple little games to show my friends when they came over. After learning a bit of how the inner workings of games, it gave me a different perspective and made our conversations more interesting. This is just one example of me being curious.
When I turned 13, weird things started happening. I had been playing soccer and basketball for a few years, and one day I came home with some keen pain. I couldn’t remember landing on it weird, what was going on? My doctor called it Osgood Schlatter Disease, inflammation that occurs sometimes in growing boys. It then spread to my other knee, my shoulders, my back. After that I started having a great deal of fatigue and brain fog, finding it very difficult to do anything. Finally, I started having some severe abdominal pain. Something was very wrong.
I started seeing doctors and having all the routine tests, which all came back negative. In the meantime, I came down with mono making all of my symptoms worse. Since all the tests returned negative, people began treating me like I wasn’t really sick. I was forced to school, but I wasn’t really sleeping. In eigth grade I could no longer go to school. My normal life of playing sports, joking around with friends, and enjoying life were gone. It was too much for my mind to take, and I had to spend a couple of weeks in a psychiatric hospital.
For the next ten years I was constantly seeing doctors, and the routine continued. Tests came back negative, medications didn’t work or made me worse, and I’d move on to the next doctor. Finally I received a diagnosis, Chronic Fatigue Syndrome. This is the name given to a collection of symptoms that can’t be explained after ruling everything else out (AIDS, Lyme Disease, etc). There is no known cause, no known cure, and often, no hope. I began reading about this illness, but it was very depressing. Doctors compare the disability of someone with CFS to a late-stage AIDS patient or someone going through chemotherapy. One doctor mentioned that one of his patients said “I with I had leukemia, instead.”
I started taking Adderall, and for a while I thought it was the cure. It came with a lot of side effects, but hey, I finally had the energy to hang out with my friends again. With my new-found energy, I would stay awake all night and read psychology books from start to back. I made it through college where I got my Psychology degree. Unfortunately though, tolerance builds quickly with that drug, and in my mid 20s I was back to where I started. I could barely get out of bed for a half hour a day.
That was when I realized that I’ve had the best doctors can offer, and I needed to figure this out myself, or end up in a nursing home. I stopped all my medications and went through the withdrawal for a year. Then, I used my psychology knowledge as a foundation to learn more about brain chemistry and how medications work. I also learned a great deal about how the medical system works. When I’d see my doctors now, I came to them with a plan, I bring them studies, and information on medications. I started finding a lot of supplements and medications that my doctors hadn’t heard of, and I found this that helped. I also learned to cycle the medications I had so they wouldn’t lose their effectiveness.
Now, I’m squeezing every last drop of enjoyment I can get out of this life. I’m doing things I never thought would be possible for me before. I got my social life back, I’m travelling, playing live music at various open mics, and meeting people. I still have a lot of issues, but the good times are finally making it worth it. I want to share all I’ve learned with others, so hopefully they can also do the impossible and turn things around with any illness that has no happy endings.
Whether it’s Chronic Fatigue Syndrome or any other chronic illness, no matter how hopeless it seems, there is always something else you can try – even if doctors don’t know about it.