About the Author’s Illness Part 1: Fatigue

This post is hard to write. It’s more personal than the other posts I’ve put up. However, I think it’s important to share the backstory of what I’m up against, especially because it’s an invisible illness. It’s easy for people to misunderstand what I and others like me are up against, and so I’m sharing my story to shed a little light on our struggles.

The past year and a half of my life has been, quite simply, hellish. One day I was living alone and able to take care of myself and my pup, while advancing rapidly on a demanding and active career path, maintaining a full social life and set of hobbies, and practicing yoga frequently. The next day (May 24^th 2012 – it’s hard to forget), I made it through a shortened workday with an intense neck and headache, I canceled my night plans, let my pup exercise herself in my yard, and was in bed by 6 pm. Since then, things have mostly just gotten worse.

My fatigue has been more debilitating than any other symptom that’s come with my illness. Over the course of June 2012, I lost a little bit of my energy and endurance each day. Historically, I avoided using the elevators in my six-story workplace, and instead ran up and down the stairs constantly over the course of my workday. One day that June, I tried to go up a single flight of stairs, and about halfway through the flight, I had to sit down. It took me almost five minutes of sitting before I was able to muster the energy to walk up the remaining steps to the next floor. By the end of the month, I lacked the energy to make the twenty-minute drive to work, never mind having the energy to stick around to work or to drive myself home. To my deep and unending frustration, I have not yet recovered enough energy to go back to any kind of work.

It is very hard, I know, for people who haven’t experienced this kind of fatigue to imagine what it’s like. I sometimes compare it to recovering from the flu, for people who are trying to wrap their head around it. If you’ve had the flu or another intense but fleeting illness, you know how it feels to have all of your energy stores unavailable to you. It’s common, on the first day your symptoms go away, to try to bounce right back into your normal routine, but to instead find you “hit a wall” and can’t return to normal after all. Even though you might not feel sick anymore, you don’t have the energy to do what you want to. If you try to ignore that fact, you might just end up sick again. This kind of surprise exhaustion is impossible to ignore, because the body is pretty good at letting you know when you’ve overdrawn from your reserves of energy. This is what I and others with chronic fatigue are up against every day; we have very limited stores of energy, and if we overdraw from these stores, we get knocked on our asses. Another explanation of what it’s like is written in an entertaining and memorable way here: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/.

In the year and a half since I got sick, I have made some modest gains. I have good days, where I can go to a doctor’s appointment and go to a friend’s house to sit on the couch and catch up, or go to the doctor’s and do half an hour of exercise. However, not all days are good days, and to the ongoing disappointment of my partner, me, and my friends, I have to keep all of my social plans tentative until the very last minute. There is always the chance that I will “hit a wall” at any moment. Sometimes, I wake up and know immediately that all of my plans for the day need to be canceled. Other times, I make it to the doctor’s, go through an appointment, and then I have to call my boyfriend to get a ride home since I can’t for the life of me muster the energy to drive the short distance home. Other times, I’ll make it through most of my day, take a minute to rest on the couch, and discover that my body is telling me it is done for the day.

This degree of unpredictability about my limits and how each day is going to play out is something that never ceases to upset me. Maybe, maybe if I had a sense that each day would hold an extremely limited but predictable amount of energy for me, I could come to terms with this part of my disability. The way that my fatigue always sneaks up on me, though, is something I have yet to come to terms with, and something I still don’t know what to do with in terms of being a good friend, and potentially even a good worker again.

In a society where we are encouraged to give 110%, and most people haven’t given a lot of thought to invisible illnesses, it’s easy for me to look lazy. I have friends and family members who encourage me to “just work through this.” There is an assumption that, if I only tried harder, I could whip my body back into shape. To some extent, there is wisdom in this. I don’t want my eternal exhaustion to continue to decondition my body. And I am taking much of the advice of my many many doctors and of my friends and family about this. That is why I make sure I go up and down at least one flight of stairs each day, no matter how hard it is. That is why I have hired a personal trainer (as inexpensively as possible) to work with me once a week for half an hour (when I’m up to it). That is why I go to yoga for the disabled each week (when I’m up to it). I am trying to make the best of this. I am trying to keep the toll my illness takes on me to a minimum. But if I overdo it at the gym, or at yoga, I usually am out of commission for the next two to three days. On these days, plans have to be canceled, and I often can only get out of bed to get food and water and use the bathroom. Working any harder than I am working, counter-intuitively enough, is not going to make me better. This illness can’t be worked through, whether I like it or not. Instead, I have to be patient with myself, and I have to listen up when my body starts telling me it’s had enough. I have no choice.

As if the fatigue weren’t debilitating enough, I also have constant migraine-like headaches, body-wide pain and a grab-bag of additional mystery symptoms that keep my life interesting. But to hear about all that, you’ll have to tune in next time.