Most people think that people with Chronic Fatigue Syndrome, (CFS) are lazy or ‘mental’. Even my own family doesn’t understand what happened to me. I’ve always been overweight. For the most part, in this society fat people are automatically considered lazy. My personality isn’t lazy, never has been. I used to have the most perfect clean house, a perfectly balanced checkbook, a completely organized life. My life used to be a ritualized balance of working, cooking, cleaning, organizing, exercising and recreating. I used to be proud of my linen closet – all the towels and sheets color coded and prioritized into my ‘favorites’. Same routine with my desk drawers, my kitchen cabinets, my clothing drawers. That life for me disappeared ages ago.
I was studying a the University of Wisconsin, Madison, Wisconsin. I was 33, and it thrilled every pore of me to have been accepted to the University and to be studying Landscape Architecture – I had a beautiful future. I had gone to the gynecologist and she prescribed birth control pills to lessen hair growth under my chin. This hair growth seemed at the time to be the biggest problem in my life. I was fine for about 6 months, but then a huge unreasonable depression set in. I attribute that depression and subsequent asthma, to a side effect of the birth control pills.
I had no reason in the world to be depressed. I had everything a fairy tale life could include – new house, new car, excellent marriage, good health, I was thin, and my ultimate dream of a university education. But the depression was relentless, a morbid brain sickness that had me constantly inventing new ways of killing myself in exaggerated Rube Goldberg type mechanisms. I imagined patenting a ’21-gun Salute’ hat – a Mexican sombrero with 21 rifles marvelously cantilevered in circumference around the brim, with one old fashioned water closet pull chain to launch the full suicidal assault. I sought counseling, my counselor said one significant thing to me: “Carrie, you’re stronger than this.” It’s true, I was, I am. After a year, the depression ceased and I thought life would continue as it was.
While I was suffering from depression, I never stopped exercising. Making my body submit to my will felt good. I have always enjoyed swimming and after the depression left me, I decided that I’d like to compete in mini-triathlons. A mini-triathlon is a 400 meter swim, combined with a 2K run and a 6K bike ride. My spirit still soars at the thought of it. I wasn’t training to win, I just wanted to complete this goal as a huge badge of personal pride. ( I wanted that t-shirt!) I trained every day, sneaking into the university pool between classes, jogging after classes, continuing my training near my house at the YMCA and the jogging track. At my best, I was swimming a 42 minute mile and then jogging 2 miles a day combined.
Then it seemed as if in an instant, I couldn’t climb a half flight of stairs. I remember having had a cold and it felt like it never left me. I suddenly developed severe asthma symptoms, I had difficulty walking small distances without taking a rest. At the University, I didn’t have enough time between classes to make it from one end of the campus to the other, and was constantly late or would miss the class entirely. Then it got worse – the next semester I barely made it to class at all. I was literally crawling through my home, since it took less energy than walking. I needed to sleep constantly, at one point, I remember needing to take a nap while I was putting on my undies. I slept on the floor in front of my dresser with my undies around my knees. Going to the grocery store, which was across the street, was an impossible task. I would take tiny steps, like you see old people do, shuffling ever so slightly toward my destination. Every day I had a low grade fever. I thought everything that was wrong with me was a symptom of asthma, and while I saw a doctor for asthma medications, I didn’t think more about it.
I ended up taking a series of ‘incompletes’ on my coursework, and I did pass all of those classes that semester. After about 3 months, most of the overwhelming fatigue left me, and I was able to struggle through to my graduation. I was thrilled when I was accepted as an associate with a prestigious landscape architecture firm. I worked with him for several years and loved being a productive landscape architect. Soon again, I developed another cold, and just as suddenly, I was back to the unending fatigue. I had great difficulty climbing the stairs to the office, having to allow an extra 5 minutes to my morning schedule just to get up there. I would come home from work exceptionally exhausted, walking through the door, setting down my keys and often with my coat still on, falling asleep immediately. I kept taking sick days, unable to get dressed, and eventually lost my job.
It was at this point, that I did some research on the net and found that I suffered from Chronic Fatigue Syndrome. It was 1997, and CFS was a ‘new disorder’ and barely understood. There was no known treatment. At the time, my sister kept complaining about this thing called Fibromyalgia – she hurt all over, I thought she was ‘mental’.
I felt stuck, quagmired, stricken, and I had no energy to find relief especially when the net was suggesting that there was no cure. I languished for years upon years. My search for medical treatment is detailed in the next chapter.
Feel free to see my other worlds:
For the Love of Acid Cigars
Harley Davidson Gifts