Monday, April 15, 2013


      I would happily accept a little more control over my life. Actually, a LOT more control. This post is a suggested post from a friend who would rather remained unnamed.
      Dealing with autoimmune arthritis takes a whole lot of patience. I don't have a large or small amount of patience in my opinion; I would consider myself average. Of course, I strive to be patient, but I just think I'm pretty typical when it comes to that trait. I find not being able to participate in activities to be extremely frustrating. Luckily, people are fairly understanding, especially my teachers. I've heard many horror stories about teachers who are cruel and ignorant to other kids with arthritis, but I'm fortunate enough to have never had a major problem with any of my teachers, though some are quite aggravating. 
      Having autoimmune arthritis means that I have to be conscious of how much I am doing. I cannot afford to overdo it (which I constantly do) or I will feel completely exhausted and defeated later. I've gotten better at this over time, but I generally want to do what seems fun to me. I think this is perfectly normal, because what human doesn't, but I have to remember that what is fun for fifteen minutes has the potential to throw me into a flare lasting many days. 
      A lot of times I go to things and push myself to try new things because I genuinely think I can do them. I'll show up somewhere (take school, for example) feeling relatively fine. The pain is not unmanageable and I still feel able to accomplish what needs to be accomplished. However, I wear out very quickly and I'm stupid enough not to anticipate this. I often start out feeling half-okay and then go downhill. I mean, I've fallen asleep several times in the cafeteria. It's a problem. 
      For this reason, there are few things that are more helpful than a schedule. When I have a schedule (or even just a general outline) of what is going to be happening at an event or in class, it takes about a thousand pounds of weight off of my chest. If were are doing major activities, I prioritize a certain one, like activity 3 for example, and then I know to take it easy on activities 1 and 2. I can space out my energy levels to make sure that I get to do everything I want to do. I can also know ahead of time whether or not and when I will need to sit out. That said, it is important to keep in mind that autoimmune arthritis has some patterns but is also very unpredictable. I may feel better than I expect or worse in a single second. Even with proper spacing and taking it easy, my arthritis can flare. Sometimes I do more than I thought I would be able to and end up feeling not too shabby. 
      People don't tend to realize that juvenile arthritis takes a toll on my whole body. Not only do my joints hurt, but my stomach aches from medications and I'm severely fatigued (speaking of that...I promised myself I would take a nap today....and I didn't...). It is really hard for me to do a lot of "normal" things, and that is beyond frustrating.
      Prioritizing has become astoundingly important as my disease progresses. Prioritizing my physical activities has taught me a lot about prioritizing my life. At the top of everything has to be God, and then my family and my friends. Grades are important, but they aren't everything. I personally think adults put too much stress on school. School is not the world. In fact, it's a very small portion of it. Everything can wait if someone you love needs you. Everything. I think that's really easy to forget, but worth remembering. 
       Now, I'd like to share with you one of the best pictures I've ever taken. This is one of the bookshelves in my house. No books were rearranged in the production of this photograph. 

       Just take a moment and let that sink it. The "Raising a Child With Arthritis" book is in between four books about raising dogs. I think I laughed for a good ten minutes straight after observing this. 


1 comment:

Feel free to comment or shoot me an email - I'll try to get back to you either way!