|Name: Cort Johnson|
|Location: Nevada, United States|
|Years Ill: 36|
|Former Activity Level (0-100): 100|
|Current Activity Level (0-100): 50|
|Former Occupation: Student|
|Current Occupation: Blogger|
I was running the Redwood forests of the University of the California at Santa Cruz when I got ill. I had finally decided on my path in life; I' developed an intense and joyful relationship with nature, and I was going to be an environmental scientist.
I was twenty years old and surrounded by creative people and doing well. There was the Farm - where people lived in the tee-pees. There were the Native American classes taught by Native Americans, the trips to Yosemite and time spent in a Native American community. There was the anthropologist who had lived with Eskimo's, the instructor who had lived in India, the Tai Chi master I meet and a host of others.
My written evaluations indicated that my instructors thought of me as a creative and inspired student. I couldn't have been in a better place.
But during the course of a quarter during my second year there something happened and I gradually become more and more fatigued. After a month or so I could hardly make it to class. My thighs ached, and it felt like the blood was pooling in my feet. Many times I felt like I just had to lie down. I remember being stopped by campus security who were concerned when they saw me stopping and resting.
I went on a diet suggested by a chiropracter which made me feel better but overdid it and lost a lot of weight and felt worse. Eventually I retreated back home in Southern California. Many tests were done, all of which showed nothing. Trips to psychologists made no difference at all. I was emaciated and in pain. Walking across the room was painful.
Sometime in the next year or two I tried something called the EST training - a two-weekend program - designed to transform the quality of one's life. Many people came out with dramatic increases in vitality and remarkably enough I did as well. My fatigue and pain lessened and I started back to work again. I volunteered extensively with the organization for the next 7 or 8 years.
EST, thankfully, got me out and about, but I still couldn't exercise, was frequently in pain, and was cognitively challenged. I was still a very different person. I ended up working at low paying jobs as a cashier, in fast food places, etc. I didn't feel I had the capability to do more.
Over time I went back to school and got a degree in Philosophy at Long Beach State University and then, in the late 1990's got a Master's Degree in Environmental Sciences at San Jose State University. I had no idea what I was going to do with it. I was lucky in the end to be able to do things that came naturally to me - studying and writing.
I could get around, but rarely felt good, felt cognitively stunted and couldn't engage in other than mild exercise without suffering. It was like 50% of my life had been taken away; much of the time I just struggled to get through the day.
During that time in an effort to see if living in nature - always a goal anyway - helped I began camping out. Finding that I could do that successfully and save money I camped out for the last couple years of college.
As I completed my Master Degree I came down with a very severe case of chemical sensitivities that impacted my life greatly. I moved to my sisters where I lived in her backyard or when the wind blew in the wrong direction - their house was above a golf course - on the hill above their house.
I also spent quite a bit of time living in the desert trying to recover from the chemical sensitivities. The mountains were out because of my problems with pine trees. They took quite a while to abate to the point where they didn't dominate my life but eventually they did.
I started Phoenix Rising in the early 2,000's, took it non-profit about ten years later and then, after a conflict with the small Board, left it in late 2012 to start Health Rising
At some point I moved to Las Vegas where I lived in an apartment (sleeping on the balcony) and then to a house. There I got one dog and then another and then after I met somebody traveled quite a bit and for mostly brief stints in Mexico, Arizona, North Carolina and Colorado. After I broke up with my girlfriend I set out with the two dogs on an extended camping trip that continues three years later.
I tried many things early on - none of which had the slightest effect - positive or negative. At one point about 15 years in I started reacting well to everything I tried but paradoxically once my energy levels started to rise they would set off a weird reaction that caused me to crash again.
Thirty some years later I am finally learning the benefits of pacing. I stopped trying do anything other than walk for exercise decades ago but I tended to push myself in other ways until I crashed. Now regular rest breaks are more a part of my routine.
Around 2000 I started Phoenix Rising and somewhere are 2010 turned it into a non-profit organization. At the end of 2012, after disagreements with the small Board regarding my position (I was to be a blogger), I left Phoenix Rising and started Health Rising.
I have been very lucky to have a supportive family who have never discounted ME/CFS and I am very, very lucky to have a father who has helped to support me financially for many years.
Lives Interrupted: Life Before and After Chronic Fatigue Syndrome (ME/CFS)
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Not Running Any More - See Cort Johnson's story here