In an effort to try to feel like I do “enough” in a day, it has been suggested to me that I should write down all the things I do in one day. Keep in mind, some normal, mundane activities require a tremendous about of energy. And the ones that require a tremendous amount of energy are liable to make me tired enough to sleep for a week. This theory has been so labeled The Spoon Theory by those who have a chronic illness but don’t always “look sick.”
I have always hated that statement. I know most people think they are being complimentary. What I hear is “It must not be THAT BAD if you are here doing insert activity here.” The worst is when people who are not sick are mollycoddled and protected. Meanwhile, if I park in a handicap space on a day I get chemo because I have 1/2 a spoon left, and it’s not even the good 1/2, and someone yells at me for taking up a spot that is reserved for people who are “really handicapped.” Needless to say, I no longer have a handicap placard.
Back to this list thing. I am afraid that this list concept has back-fired on me. Instead of seeing all the things I have done, I see all the things I forgot to do, or just could not find the energy for. Then I start to feel like I am not trying hard enough. Like I am a weak person for not being able to do what feels like the minimum.
I am afraid that some of this also stems from people trying to reach out, and instead they scare me away. I feel like sometimes people try to relate, which is nice, but no one knows what I am going through. I feel like it took me A LONG TIME to accept that I have a chronic illness. I still have not come to term with everything. I am not sure I ever will. So when I see people who have just dropped their spoons with out a fight, I become resentful, and that’s not right. Worse than that, they have them but don’t use them. Then try to compare themselves to me, and it gets hard to swallow. Am I really sick? Are they really sick? Am I just being lazy? How can I tell them I am not done fighting? How can I tell them that I am not them? Am I allowed to share with them my stories of victory as they try to drag me into this realm of self-pity?
I get angry. It makes me want to fight harder. It makes me not want to waist my time. I am not sure this is a good thing. As a matter of fact, I am pretty sure I am doing some damage. But, as we are taught in all PSYCH 101 classes, you have a fight or flight reflex. I have done a lot in my life.
I still don’t know how to fly.