Monday, June 6, 2011

My Spoonie Mantra

First off, what's a Spoonie? You really need to read this to get the full meaning, but in a nutshell, a Spoonie is someone with a chronic illness, especially those people who may not look sick.  "Spoons" are the amount of energy each daily task requires to complete. Here is my personal experience with spoons...

  • Each task can use up a different amount of spoons, depending on the day. For example, most days I can get out of bed, shower, and get dressed, then complete the rest of my day. No prob. But sometimes, standing in the shower and raising my arms to wash my hair completely wipes me out.
  • Heat, humidity, and other environmental factors greatly influence the amount of spoons, or energy, I have on any given day.
  • I make fewer promises than I used to...I may feel great when I agree to do something, but when the time comes to do it, I may feel like crap and have to break my promise. That sucks.
  • Some medications can be deceiving. Right now I am on steroids to control my Relapsing Polychondritis. At just the right level, I feel AWESOME. Lots of energy!! I must constantly remind myself that this is a LIE. I do not feel great, the meds are just making me think I feel that way. If I over-do it while I'm "feeling great", I definitely pay for it later.
  • I cannot save spoons for another day. I try, but it doesn't always work. Each day is unique.
  • However, I do ration my spoons. If I know I have to go to the grocery on Wednesday, I may plan for an easier day on Tuesday and/or Thursday. Just in case.
  • I feel guilty when I "waste" feel-good time by resting when I don't seem like I need it. This is stupid, I realize, because I always need it. So here's my new mantra:

I am a Spoonie. Today, I will willingly rest before fatigue and pain force me to do so. Today, I will accept my limitations and focus on the things I did accomplish. Today, I will leave beds unmade and dishes dirty. Today, I will take care of myself without guilt.
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  1. I like your mantra - now you just need to start DOING it. Heh.

  2. The Bug directed me to your blog, because I just started one about RA and wrote about The Spoon Theory a few days ago. Since I live where it is very hot and humid, I really appreciated your thoughts about that depleting energy--I hadn't even thought of including that in my spoons! I am also on prednisone, but don't feel like I am getting extra energy from it--just fat. Thanks.


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