When I Accepted My Energy Limitations With Chronic Fatigue Syndrome

I was a healthy, full-time teacher in my 40s, someone who also taught summer school, took night courses, skied, and rode horses for fun. Obstacles were challenges. I refused to submit to the demands of colds or the flu, and didn’t accept failure as an option. I felt powerful and effective.

Over the course of a couple of months, I became fatigued, then exhausted. I had extreme pain in my muscles and bones. I acquired cognitive deficits, particularly when it came to my memory. I gave up driving after stopping at a red light, then driving right through the intersection as if I’d been at a stop sign. Crossing the road was impossible; I couldn’t remember what I saw in each direction. I lost nouns from my vocabulary although I could describe the function of objects. Eventually I slept 20 hours a day, but sleep was not restorative. I began to hallucinate at night, vivid and terrifying visions of blood and fighting animals. I fell down the stairs during sleep walking. My general practitioner listened to the symptoms and then, in a caring voice, asked if my marriage was solid.

Not until blood tests revealed a high Epstein-Barr virus load was there any attempt to diagnose an illness, and even that was unsuccessful until I had seen several specialists. Chronic fatigue syndrome is debilitating, but invisible to the observer which increases the patient’s suffering as colleagues, friends, family remark, “You don’t look sick” and question your honesty. I was on long-term disability for two years and then worked part-time for another four, unable to handle a full work load.

I am one of the lucky ones whose health eventually improved with the help of an innovative doctor. As long as I monitor my energy levels and lay low when they are down, I have a pretty “normal” life now.

I was shocked to learn how quickly you end up outside of “normal” society, either from being shunned by people who don’t care to be around someone who is sick or who cannot keep up, or by your own belief that you are not equal because you cannot participate fully. It becomes hard to imagine what you can contribute when you have lost so much. It is easy to spiral down into depression, cursed by thoughts of who you used to be and what might lie ahead. Everyone gives you advice, but their advice comes from a place of ignorance; they’ve never had a chronic illness. Support groups didn’t work for me because I did not want to hear about how to cope — I wanted out of my situation.

I lost a lot of time by being in denial. I could not accept my limitations and struggled against them constantly. If I had a window of energy, I threw myself into activities I’d been unable to do. That depleted the energy quickly, and I paid the price in increased pain and exhaustion. The best advice came from a rehab counsellor who said, “Estimate how much energy you have and then use half of it.”  This went against everything I had ever believed — but it worked. It forced me to be subjective, to plan, to stay in the moment, and to think positively.

Once I was healthy again, I began to look at how I had lived my life previously. I had always considered sickness to be a weakness. I had refused to accept limitations. I ignored the inner voice that whispered, Maybe you shouldn’t, and pressed on regardless of possible consequences. That attitude had given me a pretty exciting life, but it took its toll on me physically. By then in my 50s, I had to face the fact that limitations were going to increase with each year as I aged. My attitude would have to change. I wasn’t on a quest to shut down and become sedentary. I wanted to get the most juice out of life, but that wasn’t going to happen if I ignored reality.

Now I live my life differently. I still ride horses, and sail, and go canoeing. I pursue new interests, new people. But I monitor myself, my energy levels, my reactions to things, and when I don’t like what I see, I ask myself if there’s another way to think about what’s happening. If I’m getting tired because I’ve done too much, I figure out which tasks are disposable or can be put off. If I’m feeling angry or frustrated, I ask myself if I can choose a different reaction. If I’m sick, I actually rest. My life has less drama, more satisfaction, and I have the energy to enjoy life to the fullest.

Not everything is under our control, but I have learned how you react to what happens to you is under your control.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.