Sunday, November 29, 2015


     Flares hurt my body in all sorts of ways, but one of them is through fatigue. Of course, it does not seem so horrible. Most people associate "fatigue" with "tiredness," and I did too before I experienced it myself. I thought fatigue must be the way I felt after a long day of sports and tests at school, or after my parents took me to the NC State Fair in the fall and I slept in the car during the drive home.

       The peculiar thing about fatigue is that it is totally unpredictable and overwhelming. It is more than tiredness; it is the purest exhaustion I have ever encountered. Fatigue feels like an urge to sleep mixed with an urge to be at peace mixed with feeling like I might collapse. My longest walk between classes is my B-day walk from chorus to my independent study, and I dread it immensely. Once I am at my independent study classroom, I usually ask for a pass to the library, because it is easiest to work in there. So after making the first difficult walk, I trek to the library, and I feel more like a corpse than a human by the time I sit down. I am simultaneously being essentially attacked by a swarm of teenagers who are in a rush to end the school day, which really does not help the situation at all. I was embarking upon this ridiculously strenuous journey a couple of days before Thanksgiving break, and about halfway through I felt incredibly fatigued. I wanted a bed to appear, and I wanted to take a nap and stop moving my joints for approximately ten years. My hands were shaking slightly with the pain, and I think I looked pretty awful by the time I made it to the library. My body felt like it was shutting down on me.

       The other peculiar thing about fatigue is that it often affects my relationships with people, which is unfortunate. I am genuinely too tired to talk sometimes. I am too fatigued to try to figure out what people mean, or to decipher their sarcasm, or to laugh at their jokes. I need to be able to take things at surface value, and I need people to be straightforward with me, because I simply do not have the energy to entertain their complexities. I fear that this comes across as not wanting to be around people, but that is not true. I just don't want to use up all my energy in my interactions, because I have to save a lot of it. Naturally, this is easier with some people than with others. I hate feeling like I am rationing out my energy or time, but that is just the reality of it. 

     The worst part of the exhaustion is that it does not making sleeping any easier. I have struggled with getting to sleep and staying asleep for quite some time due to the pain in my joints. One would think that the more exhausted I am, the easier it would be to get to sleep, but somehow my body defies all of the laws of science and this is not generally true. 

     Despite the trouble fatigue is causing me, I am getting used to it. I know how to schedule myself to make the most of my time, and I am laughing about it a lot more than I am despairing about it. It's super lame to feel exhausted after walking less than a mile at Duke Gardens or after going to church, but it is what it is, and so I curl up under a blanket later in the day and laugh about how pathetic it is. I have convinced myself that watching "House" on Netflix and writing scholarship application essays is a good way to cope, but I suppose my methods are still up for debate.

     A few years ago, at the National Juvenile Arthritis Conference, I listened to a presentation given by Jeffrey Gottfurcht, the first person with rheumatoid arthritis to successfully climb Mt. Everest. As a 13-year-old dealing with the same disease, I was filled with questions. I wondered how he combatted the fatigue. Even for healthy people, that journey is extremely dangerous and unbelievably tiring. For now, high school class changes are my Mt. Everest. But with all of the advancements in RA treatment, maybe one day my Mt. Everest will be the real thing. 

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