Exerpt from the webpage of Christin Miserandino.
. . . . . . . . continued . . . . . . . . .
Showering cost her a spoon, and just shaving her legs cost her a spoon. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my shoulder joints are sore that day, over-the-head tops are out of the question. Depending on the shirt, some are totally out of the question due to the loss of the range of motion in the arm on the side I had surgery. That range of motion has not totally returned, and getting dressed into some outfits without help is not possible. Since my hair has fallen out, I need a little more time to look presentable - I'm pale and tired looking, so I need to wear makeup to look nice in my hats, etc. Then she needed to add in another 5 minutes to her time for feeling depressed that it took 2 hours to do all this in the first place.
I think she was starting to understand when she theoretically didn't even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow's "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn't want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had two spoons left. If she cooked, she wouldn't have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn't even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So, she decided to make soup, it was easy. I then said "It is only 7 pm, and you only have one spoon left. You have time to do something fun with your family, or do some laundry or clean up dinner dishes. . . but you can only do one thing - you can't do it all. Cleaning house is out of the question due to the risk of infection - so save up your money!"
I rarely see her emotional, so when I saw her upset, I knew maybe I was getting through to her. I didn't want my friend to be upset, but at the same time, I was happy to think finally someone understood me a little bit. She had tears in her eyes and asked quietly "Christine, How do you do it? Do you really do this everyday?" I explained that some days were worse than others; some days I have more spoons than most. But I can never make it go away and I can't forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared."
It's hard, the hardest thing I ever had to learn is how to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. when other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lfestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said "Don't worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don't have room for wasted time, or wasted "spoons" and I chose to spend this time with you."
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