“The Spoon Theory” was thought up by an individual with Lupus. It always makes me sad to think about, because I don’t have to plan life as much as she does. She has to plan around her ability to button shirts in the morning or take extra time to look presentable if there are bruises on her arms or if her hair is falling out. You can view her original story here. Anyway, I was thinking about this as I read the article to Dr. Wile E. Coyote yesterday morning, and I wanted to create my own spoon theory. Anyone who is physically disabled or has an illness such as MS, fibromyalgia, Lupus, no matter how severe or not, can relate to the Spoon Theory.
Each spoon represents energy that I have in my day. People who are not sick have an unlimited number of spoons, and even if they use them all up in a day, many are regained with a good night’s sleep. This analogy also works well with a gas tank, that once you run out, it takes another night’s sleep to gain it back. But for the sake of this post, I will stick to spoons.
I’ll begin this illustration by handing you, my reader, twelve spoons.
“Only 12?” You ask suspiciously. Yes. Only 12. Let us begin the day.
At 2, 4, and 7 am, we get up to go to the bathroom, so it is really hard to get up later. Luckily, I do not work in the morning, so if I don’t get up until 8:30 or 9, it’s okay. But I’m already behind. But I have 12 spoons. At 8:47am, I get out of bed. I get up, shuffle through the clothes in my closet, and get dressed. I go to the bathroom to take my medicine, brush my teeth, put on some makeup, and just in general be ready for the day. I then go and put a bowl and some cereal on the table, make a pot of coffee, and sit down to eat breakfast. Oops, there are only 11 spoons in our hands now. I was standing for much too long this morning. Unlike others who have central nervous system diseases, I don’t notice when a spoon is missing until I sit down and relax for a moment. You can see how this may be hard when I am go-go-go for too long. It also doesn’t help how stubborn I am at times.
After breakfast, I sit down with my Bible, journal, and cup of coffee to spend some quality time with Jesus. I love doing this daily for a few reasons: 1) It starts off my day with eternal thinking, which always puts me in a better mindset when it comes to other things. And 2) It doesn’t cost a spoon. : ) Then I go ahead and do some chores. I put some clothes in the wash, and I decide to get some supper started in the crock pot while I’m up and on my feet right now. If I went and sat back down now, I would not lose a spoon, but because I have all this energy and am motivated and already here, I shall continue—but I lost another spoon. After supper is started and clothes are put in the drier some 20 minutes later, I sit back down in my spot to rest and catch up on some writing or reading or something else on my computer. I have 10 spoons. I wanted to go shopping today, but I also have to work today. Shopping usually costs about 3 spoons, so I decide to go tomorrow. We’re out of milk, but Dr. Coyote will make eggs or something for breakfast for himself. Shoot, we’re out of eggs, too. “Well, then, I shouldn’t have done laundry and started supper if I wanted to do all those things today!” I say frustratedly to myself. I look at my schedule the rest of the day and plan it out.
I leave at 11am to go grocery shopping, and after I decide something, I’ll do it, even if I…shouldn’t. If I leave at 11, I know Dr. Coyote will be out of class in time to help me unload groceries (because I texted him as I left). But as I’m grocery shopping, I have to back track because I forgot that something on my list was in the second aisle, not the second-to-last like in my hometown. I skipped getting another thing that I really did forget on my list simply because I didn’t want to lose another spoon. I have 6 spoons when I get inside the hot car, and 5 spoons before the car cools down enough where I feel like I’m breathing fresh air and my body temp goes down.
As soon as I get home, I climb the stairs with eggs in my hand, put the eggs away, and sit down, exhausted, with 4 spoons left. I didn’t take as long as I thought I might, so it’s not even noon yet when I crash. I listen as Dr. Coyote gets home and heads right for the car, taking as many groceries in his hands each trip as he can. He then starts putting groceries away (because he is such a sweet guy like that). At 12:18, I get up to help with the last few things. I now have 5 spoons again, because that sitting break is exactly what I needed.
“What do you want for lunch?” I ask my husband. He has to leave for class again at 12:55, so that doesn’t leave us much time. Had I not went grocery shopping, I could have had lunch started, or even finished by now. I beat myself for it, but Dr. Coyote tells me to go sit down again, because he has an idea for lunch.
I join Dr. Coyote at the table as he finishes putting together salads on two different plates, thanking him for carrying up the groceries and for making lunch. We eat and visit. I still have 5 spoons left, but I think I can get another back before I need to go to work.
That is just the first half of my day, but I do have to plan a little more. These are some recent examples of some harder days I’ve had. But I learn from my mistakes. I haven’t always planned enough in my day, but I know what I can and cannot do. Unfortunately, I’ve had to learn a lot of that through trial-and-error, but I don’t make the same mistakes forever. I’m not always aware when I’ve just dropped a spoon or took one away until after it has happened. Sometimes, I take tomorrow’s spoons by mistake, and have a harder day tomorrow.
Dr. Wile E. Coyote is learning more about MS in me and MS in general, as well. I share with him little bits, but it wasn’t until I read him the original spoon theory article that he really understood. Reading articles from the MS Society, I do know that people who have MS use 5x more energy than people without. We have to think as we walk. I have a limp, and need to lift up my left leg, even when it feels s o h e a v y at times.
In an article I read by Cathy Chester yesterday morning, I learned that there are a few different kinds of fatigue. There is primary MS fatigue, which Chester described as “waking up feeling somewhat energized, then feeling tired in the afternoon and less tired in the evening.” There are also different forms of secondary MS fatigue. Nerve fiber fatigue is when you are doing something, like walking or playing the piano, and suddenly your legs or your fingers feel weak. Both of these happen to me personally. There is fatigue of walking with a disability, which I have already discussed. There is fatigue caused by disrupted sleep. I have experienced this, as well, as urinary problems and other digestive problems have woken me up in the night repeatedly. To learn more about MS fatigue and what you can do about it, read the article I read yesterday here. I have found that planning, as well as rest breaks, work for me. I have jobs where I can sit while I work, and I have family, friends, and an amazing husband who will all help me out when needed. They don’t even know when they step up and rescue me, but God knows what I need and makes sure I get it.
I felt like I should write this so that my friends and family can understand me better. I have told this story to one friend, who had tears in her eyes as I finished, because she simply hadn’t understood before. I don’t want people to always feel like they need to help me, because I am independent and can do plenty of things on my own. But when I can’t do everything that one might expect, this is why. I haven’t completely understood how to explain, nor have I wanted the sympathy that stories like this sometimes bring. But I have come to a place where I would just like you to understand.
I’d like to hear from you: If you have an illness, do you have to plan your day around your illness? What kinds of things do you do to help yourself? If you don’t have an illness, does the spoon theory help you understand other illnesses better?