Photo Courtesy of Joey Tuan
Joey Tuan was an adrenaline junkie, working 60 hours a week as a consultant in San Fransisco. He went to the gym four times a week, and studied for the Chartered Financial Analyst exam in the evenings.
He was in a committed relationship, and jumped at any opportunity to go to new bars and restaurants with his friends.
All that changed when he was 23, the day he became ill with myalgic encephalomyelitis, or M.E. (formerly known as chronic fatigue syndrome).
He was in the third mile of a 17-mile hike at Half Dome in Yosemite National Park in California, and found himself feeling "like death warmed over". When he got home he had a "high fever from hell" and was incapacitated in bed for two weeks.
When he went to the ER, he was diagnosed with mononucleosis. Weeks went by and he was still bedridden. He had to move back in with his parents in Los Angeles, bedridden and needing help with everything, including eating, for the following six months.
It took 10 months to be diagnosed with M.E. He'd never heard of this condition, learning about it on an online forum. He was fortunate to find mention of a good doctor in his area.
Tuan was incapacitated for six years, spending more than $200,000 on treatments. In a typical day, he would sleep anywhere from six to twelve hours at a stretch, but never woke feeling rested. His mother took care of his meals because he was unable to stand up to cook.
He was able to spend half an hour on the computer researching for his condition, then his head was throbbing too much and he'd have to stop. The rest of his time was spent meditating, driving around, and watching TV which he never used to do.
He had a bath at night since he couldn't stand up in the shower. He'd take benzodiazapines to put him to sleep, ending a day where "I was basically living but not alive."
His social life and his efforts researching his illness, were online in patients' forums. Though he learned a lot about other peoples' symptoms, he didn't know if he was dealing with the same things or whether their treatments would work for him.