Now that I have started to come down from last week’s excitement, I realized something important. I forgot that I have a chronic illness. That’s huge and amazing at the same time. First off, how awesome is it that I have managed to arrange my lifestyle to accommodate enough time for self-care that my symptoms are minimal enough not to have a negative impact most of the time? I see friends of mine with similar chronic conditions talk about how many spoons they have left and thank my lucky stars that I usually have enough spoons to get through each day with a few in reserve. Spoon Theory
Sure, I have my bad days, but my illness is largely in remission. In fact, I’m not even medicating for it right now. But I’m never going to be cured, and it could turn ugly and kill me without a lot of warning. So I wake up every morning and say to myself “today is not the day” and move on with my life. Because my life is unbelievably good and I love it.
It wasn’t that long ago really that I had to worry about covering up the fact that my hair was falling out, or having to walk with a cane, or couldn’t write my name because the tremors were so bad. Ok, some days I hurt, or my vision goes all wonky, I’m short of breath, and I can’t think or talk straight. I admit it. Some days just suck, but it has been much, much worse.
So I was taken a bit by surprise how tremendously awful I felt during this camp. My emotions were all over the map. I shook, my heart rate wouldn’t slow, my eyes were red, not just from crying, but from swelling of the muscles around them. In short, I didn’t do what I needed to do to keep from being a broken mess. Oddly enough, I didn’t make the connection to my disease until today when I was sitting at work wondering why I still felt so darn terrible. Duh! You’re sick, stupid.
It’s sort of a blessing, really. While it was miserable at the time, I am so lucky that I am in a position that I can forget something that is such a big part of my life. Still, forgetting was dumb and I shouldn’t make that mistake again. There really aren’t enough spoons for that anymore.