Expanding My Envelope: How I Balanced Work and CFIDS

By Kristin Scherger

Note: Kristin Scherger is a CFIDS patient from Minnesota. She has participated in many groups of the CFIDS/Fibromyalgia Self-Help Program, including being the leader of several introductory courses.

I have faced many challenges in my seven years with CFS, but few have been as significant as the fight for my career. When I first became ill, I had just begun working as an occupational therapist, a field I had dreamed of entering since I was a girl. Fresh out of school, I had all the energy and motivation in the world. But a year later I came down with a late winter flu-like illness that I could not shake. Although I didn't have a name for it at the time, I had begun my adventure with CFS.

My life with CFS was like riding on a roller coaster. When my symptoms were strong, I would lie at home in bed for days. When I felt better, I would drag myself to work for several weeks before collapsing again and returning to bed. I had always been able to push through other illness, but this time "pushing" only made things worse. The unimaginable had indeed occurred, and I was forced into facing the possibility of losing my career.

Initial Efforts to Salvage My Career

My first attempt to solve my career dilemma was to reduce my status to part-time. Working four hours every morning allowed me to rest and nap during the afternoon and evening. But I continued to feel quite poorly and wasn’t able to do much except work and rest. After several months my health showed very little improvement and my employer was unable to maintain my part-time status indefinitely.

My second solution was to work as an on-call occupational therapist. This involved being on a list that the hospital would call when they needed extra staff. Unfortunately, I soon found the job was not as ideal as it sounded. I had difficulty saying no to work opportunities since I did not know when I’d have another chance to work again. So, I would work myself to exhaustion, then require days of rest to recover. Even though I only worked an average of two days per week, my life remained on a constant roller coaster.

Emotional Consequences

Not only was my work as an occupational therapist very energy consuming, but I also saw my attitude toward my job and toward my patients change for the worse. I became resentful of how much my career took out of me. I started to dread going into work, and became overwhelmingly focused on simply getting through the day so I could go home.

Also, I found I could no longer manage my anger and frustration. When patients were feeling sorry for themselves, I wanted to yell at them that they were not the only one with problems. Prior to CFS I was proud of my ability to sympathize with my patients and effectively manage even the most difficult ones. Because of CFS I had become a less stable individual, one who was quite emotionally labile.

The career I had once loved had become a nightmare. But, despite my difficulties, it was nearly impossible for me to imagine leaving it. I had worked in healthcare since I was seventeen and had experienced happiness as an occupational therapist. But gradually I began to ask myself whether I should let go of a career in healthcare.

New Insight: The Energy Envelope & Logging

In the next few years, two things happened which gradually pointed me toward a solution. First, through counseling I recognized that I was not in fact recovering and that I had to accept that CFS was a central part of my life. Second, I found some useful ideas in the CFIDS Self-Help Course. Two of the most helpful were the concepts of the Energy Envelope and logging. I learned that the Energy Envelope is the amount of energy a person can expend without making symptoms worse. Through logging I was able to establish an obvious connection between a day of work, and a severe spike in my symptoms. I kept a daily log of my activities and the time I spent at them. I identified how demanding of my energy each activity was using a scale I created.  I also included my symptoms and their severity using another scale. My roller coaster life had become a clear example of an individual living outside her Energy Envelope

Logging convinced me that I had to change careers.  My records showed clearly that during weeks I worked, my symptoms were high and I was not able to do much beyond going to work, resting up for work, or recuperating after work. Using the 0 to 100 CFS/Fibromyalgia Rating Scale, I estimated my level during that time to be between 20 and 40. My life during other weeks was a big contrast. When I didn’t work, I was able to do more and my symptoms remained lower. I successfully maintained myself at 40 to 50 on the rating scale. I concluded that I needed to leave my career as an occupational therapist and find work that was within my Energy Envelope. If I did not do this, I would never get off the roller coaster.

A Difficult Experiment

But the idea of looking for a new job outside the medical world was scary. To begin with, my self-confidence already suffered from trying to cope with my CFS symptoms. Also, I was worried that the loss of my comfortable income would place financial hardships on my husband and me. Finally, I had no idea how to begin to look for a job outside the occupational therapy field, or how to “sell” myself to a potential employer.

I applied for various jobs without success. A breakthrough came one day when I received a call from a local park district, with whom I had interviewed unsuccessfully for a receptionist job. They asked if I would be interested in a temporary job with them. Suddenly I had a “safe” solution. I could try something new without being required to make a huge commitment or formally quit my job at the hospital. This enabled me to experiment with a new job, while having the security of knowing my once beloved and financially stable career was still there for me.

Successful Lessons

For nearly the first six months of my new job I felt very much out of my element and unsure of myself. Gradually, I became comfortable with my job and gained appreciation from my new employer. Eventually, when an internal job opened up that was of interest to me, my employer thought highly enough of me to adapt the position so I could apply for it.

Now, nearly one and a half years later I am still with the park district. I found a job in Risk Management that allows me to use my healthcare background and people skills. I rarely find myself missing my former career. And although my wage is not what it was as an occupational therapist, it is very respectable and satisfying. And incredibly, I once again enjoy going in to my job every day (well…there are days I’d love to play hooky!)

Most significantly though, my change in jobs enabled me to expand my Energy Envelope. I now spend significantly more time active than in rest. This is the complete opposite of my experience when I was working as an occupational therapist. My activity level and symptom level are now even better than those times a few years ago when I was not working at all. Currently, I estimate myself at 60 on the Rating Scale. On occasion, I even experience periods at 70.

Since my Energy Envelope has become larger, I have become a firm believer in the self-management of CFS. The knowledge that I have control over my life has provided me with the hope that I can continue to apply self-management principles in my life, further expanding my Energy Envelope.  And I’ve gained confidence that I can find the strength to make changes when life presents me with challenges.

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