Spoon theory: The way to explain how fibromyalgia feels

Spoon theory  is a method to explain what it is like to be chronically ill. It is a very long article but definitely worth reading. This article about the spoon theory is not written by me, this is a translated version of the original article by Christine Miserandino. Christine has Lupus; I have adapted the article to the chronic illness that is central to my blog; fibromyalgia.

Spoon theory: The way to explain how fibromyalgia feels

The spoon theory:

My best friend and I were talking in a cafeteria. As usual, it was late and we ate French fries with sauce. In the old days, when we were young, we spent a lot of time in the cafeteria instead of at school and most of the time we talked about boys, music or unimportant things that were important to us at the time. We were never serious about anything. When I took some medicine, along with a snack like I usually did, she looked at me with a strange look, staring, without talking further.

Then she asked me, without reason, what it feels like to have fibromyalgia and to be ill. I was appalled. Not only because she came so unexpectedly with that question, but also because I thought she knew everything about fibromyalgia and chronic illness, what was known about it. She went with me to the doctors, she saw me walking with crutches, riding in the scooter, rolling with the wheelchair, saw me throwing in the toilet and she had seen me crying from the pain.

What else was there to know?

I started to rattle about pills, syringes, infusions, discomforts and pains, but she persisted and did not seem to be satisfied with my answers. I was a bit surprised, because she was my roommate when we studied and had been a good friend of mine for years; I thought she knew about the medical side of fibromyalgia for a long time.

Then she looked at me with a look that knows every sick person very well, the expression of pure curiosity about something that someone who is healthy really can not contain.

She asked me how it felt, not physically, but how it felt to be me, to be sick.

As I tried to calm down, I looked around for something to help me, but also to stretch the time to think. I tried to find the right words. How do I answer a question that I have never been able to answer for myself? In what way do I explain in detail how you are affected every day by your illness? Can you explain emotions that a sick person struggles with, someone who is healthy?

I could have given up, joking like I normally do and can change the subject. But I remember thinking: “If I do not try to explain it to her, how can I expect her to understand? If I can not explain it to my best friend, how can I explain my world to someone else? “I had to try it at least.

spoon theoryPhoto by: Pixabay

At that time the spoon theory was born.

I quickly scooped all the spoons from the table – and even from the other tables. I looked into her eyes and said, “Please, you have fibromyalgia right now.” A little surprised she looked at me, as most would do if they were given a bouquet of spoons. The cold metal spoons rang in my hands as I gathered them and put them in their hands.

I explained to her that the difference between being ill and being healthy is that a sick person has to make choices and constantly have to think about things, while the rest of the world does not have to.

Healthy people have the luxury of a life without those choices,

a gift that most people take for granted. Most people start their day with an unlimited amount of possibilities and energy to do whatever they want, especially young people. In general they do not have to worry about the effects of their activities. So I used the spoons to make this clear.

I wanted something for her to hold and that I could take away, because most people with a chronic illness experience a sense of loss from the life they had until then. If I kept the control of the removal of spoons, she would know how it feels that someone or something, in this case fibromyalgia, has control over your life.

She grabbed the spoons with enthusiasm

She had no idea what I was doing, but she is always in for fun things, so I believed she thought I was joking, as I normally do on sensitive subjects. She did not notice how serious I would become.

I asked her to count the spoons. She asked why, and I explained to her that if you are healthy, you expect to have an infinite number of spoons. But if you have to plan the day carefully, you need to know exactly how many spoons you start the day. It is no guarantee that you will not lose a few more spoons on the way, but it helps to know where you can go. She counted: 12 spoons. She laughed and said she wanted more. I said no”. Immediately I knew that this game would work when she looked disappointed – and we had not even started yet!

I want more spoons for years ..

..and have not found a way to get more, so why would she get more? I told her that she should always be aware of how much she still had and that she should not drop them, because she now has fibromyalgia and therefore has to use her spoons sparingly.

I asked her to tell her daily activities, including the simplest things. As she talked about all the daily and fun things, I explained to her that every business would cost her a spoon. When she immediately told me about going to work, I interrupted her and took a spoon. I almost flew her.

I said no! You do not just stand up.

  • First you laboriously open your eyes, and you find out that you are late because you have slept badly.
  • You crawl out of bed with difficulty and you first have to make sure you eat something before you can do anything else.
  • If you do not eat anything you can not take your medication, and you can immediately hand in all the spoons of today, and those of tomorrow too. “

I quickly took a spoon and she realized that she had not even dressed herself. Showering costs her a spoon, just for washing her hair and shaving her legs. In reality, the high reaching of the arms during the hair washing and the low reaching to shave her legs might cost more than one spoon, but I left it for a while. I did not want to scare her immediately. Dressing again cost her a spoon.

I stopped her again.

..and brought up every little step in the process to make it clear that she had to think about every detail. You do not just put on some clothes when you are sick. I explained to her that I have to see which clothes I can actually wear.

  • If my hands hurt, buttons or a zipper are out of the question.
  • If I am going to be fired all day, I need long, soft sleeves.
  • When I have a fever I have to wear a warm sweater to keep warm and so on.
  • If I have slept badly, I need more time to look good.
  • And then you also have to add 5 minutes that you need to feel angry or sad, because all this took me 2 hours.

I think she started to understand it.

Then I explained to her that she had to figure out the rest of her day, because when the spoons are finished, they are really gone. Sometimes you can borrow the next day’s spoons, but remember how difficult that day will be when you start with even fewer spoons. I also had to explain to her that someone who is ill always lives with the threatening thought that tomorrow may be the day that you have a cold, inflammation or that something else happens to you that can be dangerous for a chronic ill.

So you never want to come with too few spoons, because you never know when you really need them. I did not want to discourage her, but I had to remain realistic and unfortunately being prepared for the worst is a normal part of a normal day for me.

We spent the rest of the day ..

Slowly she learned that skipping lunch would cost her another spoon, as well as standing in the train, or even typing too long on the computer.

She was forced to make choices and think about things in a different way. Theoretically, she had to make the choice not to do any shopping, so she could have dinner that day. When she arrived at the end of her do-it-yourself-fibromyalgia-day, she said she was hungry. I reminded her that she still had to eat hot, but that she only had one spoon left. So she had to choose:

  • If she would cook, she would have no more energy (spoons) to do the dishes;
  • If she went out for dinner, she might be too tired to drive safely home in the car;

Then I told her that I had not yet bothered to tell her in this game that she was also so sick, that cooking was no longer an issue. She decided to make soup because that was easy. I told her it was only 7:00 pm, you only have one spoon for the rest of the evening, so maybe you can do something nice, or watch TV, brush your house, or sing at your choir, but you can do it do not do it all.

I rarely saw her emotionally ..

I did not want my girlfriend to get upset, but at the same time I was glad that someone finally understood me a bit. She had tears in her eyes and asked, “How do you do that? Do you really have to do this every day? “I explained to her that some days are worse than others; on some days I have more spoons than on others. But I can never leave it behind and never forget, I always have to think about it. And every now and then a spoon disappears structurally, which you will never get back. I gave her a spoon that I had secretly kept behind.

I simply said, “I have learned to live with an extra spoon in my pocket as a reserve. You must always be prepared. “

It is difficult. The hardest thing that I have had to learn is to take it easy and not want to do everything. I fight against that every day. I hate to be shut out, to stay home while I want to leave, not being able to get things done because it is not going.

I wanted her to feel the frustration that she understood that everything everyone does is so easy. But that for me it is a hundred small tasks in one. I have to think about the weather, my temperature that day and all plans for the whole day, before I can do anything. While other people can just do things, I have to dwell on it and plan as if I were developing a strategy for a war.

The difference between being ill and being healthy is the lifestyle.

For healthy people there is the wonderful freedom not to have to think but just to do. I miss that freedom. I never miss having to count spoons.

After we were both emotional and we talked about it a bit longer, I noticed that it hit her. Maybe she finally understood. Perhaps she realized that she could never sincerely say that she really understood it. But she would at least no longer complain, if I can not eat again with her, or if I can never even visit her body and she always has to come to me. I hugged her when we left the cafeteria.

I still had that one spoon in my hand and said, “Do not worry, I see this as a blessing. I am forced to think about everything I do. Do you know how many spoons waste some people every day? I have no room for wasted time or wasted spoons, I have now chosen to spend this time with you. ”

Spoon theory (lepeltheorie)
2003 by Christine Miserandino

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