A year of living with (chronic) fatigue

There have been a number of popular books about living a particular way for the year. AJ Jacobs’ book about living Biblically or Rachel Held Evan’s book on living biblical womanhood may be the most well known but I think my favorite title in this genre is a The Year of Living Danishly. Maybe it is all that hygge (cozy living) they enjoy. I hope to find out soon in my trip there in January. 

This post details a similar genre, though entirely involuntarily so. 

On December 31 2015 I found myself being tested, stuck, and interviewed at my local ER. I had been more tired than usual since my trip to Amman Jordan the previous month. I chalked it up to a heavy travel schedule and the end of semester fatigue. I would soon be 50. Was I slowing down? But on that day in the ER, I was having trouble moving my muscles to go up and down stairs. Standing for more than 5 minutes was out of the question. Larger muscles seemed to all want to twitch with a mind of their own. Having traveled to Brazil, DR Congo, Rwanda (twice), and Jordan, the doctors thought I must have contracted something exotic and interesting. 

I spent the month of January and February teaching from a stool and spending a lot of time in bed…or at various specialists. The results all came back negative. I didn’t have a known exotic infection. Neurology didn’t turn up anything that would explain my fatigue. I was able to keep working but exercise and basic exertion was next to impossible. I had felt tired before but didn’t know that fatigue makes things like raising your hands or even chewing food to be a chore…or that fatigue makes sleep even more difficult. 

After 6 months of seeking mainstream answers and getting nothing, I turned to integrative medicine and began a regimen of massive supplements and treatment for a possible chronic lyme infection. Certainly, my level of fatigue has dropped considerably even if I cannot walk long without fatigue. I can teach for 3 hours and only need to sit from time to time.

So, what have I learned during the last 12 months? 

1. Fatigue colors everything. Sleep is non-existent. Eating is tiring. Even thinking is a challenge. Memory, mood, and libido are seriously disrupted. Fatigue of this level is all-encompassing and cannot be escaped. 
2. Planning is nearly impossible. What will I be able to do next month, next week, the next day? Should I cancel that speaking engagment? Should we cancel family vacation? I wouldn’t know how I was going to feel in the afternoon even when I felt great in the morning. I realized how little ability I had to predict my energy, especially last winter. 
3. Fatigue messes with identity. For 50 years I have done what I wanted to when I wanted to. I have been able to push (even over-extend) my body with little seeming consequence. Fatigue, on the other hand changes how you see yourself and how you relate to your loved ones. Once used to being the one to do things for others, you become the helped. When you feel 80 but you think you should feel like 50, it begins to change your sense of yourself and your place in life. At times I wondered if my career was about to be over. If you make your identity what you can do, fatigue will soon remind you that such an identity is certainly fragile and soon lost. 
4. Unknown causes of suffering is its own form of suffering. During the months of testing, I regularly had to consider what to do have the next round of “negative” results. Should I keep digging? Even after accepting an “equivocal” chronic lyme infection diagnosis, the treatment consists of medicines/supplements that are not fully supported by mainstream medicine (i.e., double-blind study results). Is it working? (Or better, what part of it is causing the positive results?) Should I continue? 
5. There is a secret fraternity among fell0w sufferers. Over the last year I have come to know many invisible sufferers. Individuals with chronic pain, fatigue, and/or disease states that limit capacity are quick to empathize. They offer support and help with ease but also with the knowledge that there isn’t a magic bullet to solve the problem. I have felt  loved and cared for by many but those who know are the best at understanding. 
6. Weakness offers an opportunity to trust God anew and to see life with new eyes. When you can only trust God (and not your own strength) you see mercy and grace you might not have seen before. When you can do what you want, you are filled with gratitude. 

I would love to say that on December 31 2016 I was able to learn all I needed to learn from my year of fatigue and revert to my former physically capable self. While I am not back to where I was, I am happy to report that I am much improved over last year. I can walk further, stand for as long as I need to, and travel internationally as I have opportunity. And I hope I continue to be more prayerful as I steward what resources I have been given.