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The Endless Cycle of Recovery and Relapse in Chronic Fatigue Syndrome

Imagine you are going on your merry way in the metaphorical walk of life when suddenly, on a day like any other, you are hit by a truck. Kaboom! You lay bruised, shocked and cursing your bad luck until you feel you are able to slowly start picking yourself up off the road. Just as you have reached your feet and dusted yourself off… kaboom! Again. “WTF?” you ask yourself. Did that really just happen? You take extra care of yourself this time, have a good look for trucks before getting to your feet again, and, sure that it’s clear, you gingerly start to limp along.

After a while you stop limping, relish the feeling of your feet moving smoothly under you and, satisfied, decide to attempt picking up the pace a little. You start into a trot, and you’re thinking you’ve left all things truck in the past, when kaboom! F-bomb. You are kidding me. Again? Is this some kind of sick joke? Your head is spinning this time. “Bad things happen in threes,” you console yourself as you pick up the pieces one last time. But it won’t be the last time. In fact, these are just the first of countless hit-and-runs you will endure and which will eventually become the norm in your life.

Before I lose you or confuse you… let me explain that this little narrative is a simple metaphor for what it was like for me to live with chronic fatigue syndrome in the early days. As is the story for so many others, my first collision with the “truck” was random and sudden and appeared to be some sort of virus. My second, third and fourth “collisions” came in rapid succession as I tried to resume normal activity “post-virus.” At this time, I had no name or explanation for what was happening to me, so I saw a few doctors and had a few tests which confirmed that all was “well.” We settled on the notion that my body was just taking its time recovering from a virus, so I waited. I waited and waited for good health to resume. From time to time I would try to resume “normal activity” but then the fifth truck came and mowed me down. Kaboom! Then the sixth. Then the 10th. And the 14th. Kaboom! Kaboom! Kaboom! And at some point, I just accepted that I was just an unlucky person who happens to get hit by trucks.

The name chronic fatigue syndrome can be misleading. The word “chronic” seems to imply that the disease is somehow steady or unmoving, and the word “fatigue,” one that any layperson can relate to, doesn’t quite cover the scope, severity or range of symptoms a person might experience. It is for this reason that I choose the image of getting hit by a truck. An episode of the illness, known as a relapse, is often dramatic, begins with a discernable trigger, and is followed by a slow uncertain road to recovery. The “chronic” part is not untrue — the trucks keep coming — it’s just that one learns to avoid them from time to time.

Aside from the obvious annoyance of getting hit by trucks all the time, this illness has some other not-so-awesome side effects…

For one, there’s the implications from well-meaning friends that over the years one must have gotten used to getting hit by trucks. Well, let me the record straight… the 39th time you get hit by a truck, the injuries are no less painful nor the recovery any less grueling than the first time. In fact, the repeated impacts drain my psyche as I lose hope of ever being a person who will walk the road of life without fear of imminent disaster. Which brings me to…

The paranoia. Imagine, if you will, how gingerly and strategically you might plan your moves or the paranoid thoughts that would plague your mind if you lived in perpetual fear of being hit by a truck — a paranoia that is only made worse when you start to notice patterns in your illness. You notice, for example, that the trucks will almost always get you when you happen to be out at night or perhaps when you do some gardening or have a stressful day at work. You start to fear and avoid these activities as you obsess about every little effort, weighing up the risks and wondering if this will be the one to inflict the wrath of your illness.

Then there’s the sadness. As one comes to accept their fate as a person who gets hit by trucks, there is certainly a period of mourning for all the things this type of illness steals from you. For me, the most notable of these were physical exercise, the capacity to work at much of anything, and that wonderful time of day known as “evening.” Though I am certainly luckier than some, I still miss the person I was (and could have been) before the trucks.

And how could I ever forget anxiety’s running dialogue in my head… how long will the recovery take this time? Will I ever work again? How will I ever X, Y and Z if I keep getting hit by trucks all the time? Will the trucks ever just leave me alone? Will there I ever enjoy my kids like I used to? And on and on and on…

These are just some of the things that one just comes to accept in a life fated with this strange calamity, but acceptance is a funny thing. So often, it is seen to be a final step on a long psychological/spiritual journey, as if one has reached some sort of ending, but I’ve learned that acceptance is a very active process that happens over and over again each day I wake up and still have this illness. Acceptance does not mean I will stop getting hit by trucks, just that I am less surprised when it happens and am ever-willing to keep getting up.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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