|Faith and I took some graduation photos living out one of |
our shared passions: eating vegan chocolate ice cream.
PC: Jurnee Paylor
On this past Thursday, my mom asked me to tell her my schedule over the next couple of days. I explained the millions of things I needed to accomplish on Friday, from saying goodbye to a teacher to driving my sister to picking up balloons, before moving onto Saturday. When I mentioned that I did not have anything planned between 12:00 and 2:30 today, my mother quickly and very seriously responded, "Good. Don't plan anything there. You need to take care of your health."
|PC: Jurnee Paylor|
My mother sees that all of the events following graduation are wearing me out. Fatigue hits so hard, and I think it must be challenging to understand from the outside looking in, because it is drastically different from tiredness. Yet even though my mother is the picture of health and does not have personal experience with fatigue, she seems to get it. We have spent six years figuring all of this crazy medical stuff out, and while there have been several overhauls of the members of my medical team since the sixth grade my mother has always been there.
The worst moments of my fatigue over this past year led me to sleep at a Christmas party, in a teacher's classroom before school even started (which is horribly embarrassing because everyone probably thinks I am just an irresponsible teenager who stays up late watching Netflix and procrastinating homework), and during phone calls with friends. It is difficult to manage because my level of fatigue does not correlate at all with how interested I am in something or how entertained I am. I could be talking to Hillary Clinton herself on the phone and the fatigue would still knock me right out.
Another factor in this whole situation is that I have a very limited amount of time left at home. The reality of moving away is hitting me like a freight train, and my weak health is not helping. I want to be with people as much as possible. I want to see all my friends and family, and I want to be fully present. I want to live in the moment. I love people and I want everyone to feel appreciated. But fatigue tells me that I am not enough. I am not good enough to be around all of these healthy people who want to say their goodbyes to me, because I cannot knock the fog out of my brain. I want to say things that are genuine and kind, but sometimes I feel too exhausted to get the words out. So far my health has not stopped me from attending any of these post-graduation functions, but I still have to make it through today, and that is a daunting feeling. My body is begging me to crawl into bed for a solid fifteen hours, but that is at least seven hours wasted sleeping when I could be loving people. I was very frustrated with my health during my drive home last night and found myself with watery eyes trying to drown my thoughts with the blaring of the radio. I decided to handle this feeling responsibly and talk to a friend about it over the phone, but by the time I got home and picked up the phone I was literally too tired to discuss the subject so I just pretended like everything was okay. Fatigue so extreme that it prevents a person from talking about fatigue is a serious matter.
Part of my problem is that I live very intensely, and not always in a good way. Taking care of my health means skipping other things sometimes, but I automatically assume that I am a terrible person if I do because it means I care more about sleeping than making sure someone else feels important and cared for. Though I am still in the process of figuring all of this out, I know this assessment does not quite align with reality. I know that I am not at my best when I am battling fatigue, but I value being present even for the little things so much that I always end up going and dreading the physical consequences. But I have been having a lot of fun this week; it has not been miserable at all, it has just been exhausting.
Before this post reaches its conclusion, I want to thank my extraordinary friend Faith. Faith and I have been through quite a lot together since the eighth grade, not so much in terms of friendship troubles but in terms of life experiences. It has been such an honor to grow up with someone so incredible. Arthritis often causes me to draw inward and to become very private, and Faith manages to respect that while gently pulling it all out of me and refusing to allow me to isolate myself. I am 100% confident that she would treat me the exact same way if I was 100% healthy, and there are not many people I can assuredly say this about. She has shown me so much compassion over the past five years, and I genuinely cannot imagine life without her. We have shared our families, homes, joy, and suffering with each other in a way that can only be described as holy. Once when we were in the car together she casually noted that she learns more about my disease and how I am feeling from reading my blog than she does from conversations that we have. I was not surprised by this, as I can be ridiculously avoidant of the topic in discussions I have, especially with my friends, and I like that with my blog at least people get to choose whether to read it or not. As she was gathering her belongings to get out of the car, Faith followed up her comment with, "If you want to talk about it, call me." And she meant it. Sometimes I call, sometimes she calls, sometimes I am unable to remember who did the calling and who did the answering. It was her Christmas party that I fell asleep at, and when I apologized profusely for my awkward mid-party nap she gently and very patiently assured me that everything was totally fine and made me feel like a human being again rather than a walking case of juvenile rheumatoid arthritis.
|PC: Jurnee Paylor|
I will make it through today, but I have not been very smart in managing my health over the past week and I need to get back on track. Unfortunately the next two weeks are really not an ideal time to do so, but I am confident that everything will work out in the end. It always does. Luckily, my joints have not been severely affected by this dip in my health, and I am having very little trouble walking, which is a real blessing. Plus, when I am surrounded by people as incredible as my mother, my pediatrician, Faith, everyone who came to our graduation party, and the young nurse who dealt so kindly with me yesterday, I have no doubt that I can make it through the rougher days, weeks, months, or even years.