Five years ago, I slowly got sick. Or rather, I got slow: Slower and slower as the days went by. At first, I just had to give up my bike for a car. Then I had to drop out of college; I could no longer walk between my classes. After exercise, I became debilitated, stuck in bed. I was suffering pain and mild twitching during my debilitated periods.
But things seemed to be improving when I experienced a four-month remission four years ago. It was a beautiful summer.
However, at the end of that summer, I crashed again. And it was worse than ever before. I was confined to bed, barely able to microwave meals and use the computer. I began to experience more severe body pain.
In December 2013, I felt my life was no longer worth living. There was nothing to look forward to but more pain, fatigue; more punishing periods of further debilitation if I tried to get out or gently push myself.
Then I experienced my second, more minor remission. High doses of vitamin C, magnesium oxide and calcium carbonate, plus super-hot baths, briefly allowed me to build strength. It was mysterious and tenuous, but it gave me hope. This method worked for me for a few years, with diminishing returns. I never knew why it worked, or why it stopped working as much. But eventually, I was feeling much worse again.
I really crashed in 2015. A tubo-ovarian abscess put me in the hospital, and the antibiotics triggered months of gastroenteritis and abdominal yeast infection. I lost almost 1/4 of my body weight.
The last year has been a series of recoveries (very minor) and worsening’s (very debilitating). More than a year after my infection crisis, I find that I am once again extremely sick, just as I was when I was losing hope in late 2013. I can barely get out of bed, and struggle to even prepare food in the microwave. I have left most of my interests and hobbies behind. Today I withdrew from my online college. School is no longer possible. Trying to learn to program when I struggle to roll over or dress myself, or when I suffer pain that makes concentration nearly impossible, has become vaguely ridiculous.
My mom has been my biggest support, now and always. I don’t know where I’d be without her.
Research into Chronic Fatigue Syndrome (CFS), the diagnosis that best fits my symptoms, is ongoing. Researchers have now realized that this disease is real and that it is not a mental illness. We really are ill; very.
However, there isn’t nearly enough money devoted to understanding this disease. We need more money for research in order to help the millions of people who are suffering from this disease of mostly unknown pathophysiology. Some researchers are beginning to understand the disease, but with more money we could arrive at answers faster. Not just answers, but also treatments — and maybe a cure.
The most promising research I’ve seen has come from the Open Medicine Foundation and from the mitochondrial dysfunction hypothesis written about my Dr. Sarah Myhill, a published author on CFS.
November 30 is my 30th birthday. Like most very ill people, I only have one wish. I want a cure.”
Dylan C. Moore