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Myth: Even though you are chronically ill, you should have the same amount of energy every day


MaryO

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Myth: Even though you are chronically ill, you should have the same amount of energy every day. "You look SO good and you went to that party last month! Why can't you come to MY party?!" When you say you are not well enough to do something, you are just making excuses. You could do it, just like you did that other thing; you are just choosing not to! 

 

Fact: You may have heard me talk about "The Spoon Theory". It was created by someone named Christine Miserandino, to explain the experience of someone with chronic illness in terms of using energy to live and to complete tasks every day. Though the myth assumes that one should have the same amount of energy all the time; the fact is that energy levels fluctuate and people who are chronically ill must make conscious decisions about what they can spend their energy on. 

 

Christine Miserandino (2010) uses the spoon theory to answer the question, “What does it feel like to be sick?” The spoons serve as a symbol for resources available and energy spent to get through every moment of every day. Miserandino states that “The difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to”. Most people who get sick feel a loss of a life they once knew. When you are healthy, you expect to have a never ending supply of spoons. But, when you are not well, you need to count your spoons to keep track and you can never forget about it or take it for granted. Each task costs a spoon and each spoon is not to be taken for granted. Miserandino (2010) asks, “Do you know how many spoons people waste every day?” 

 

Patients use the metaphor of a banking system. In this system, patients must make a withdrawal of a spoon every time they complete a task. Cushing's and Adrenal Insufficiency patients talk about the "Cortisol Bank" metaphor. The concept is the same and the idea is that certain stressors and/or tasks cause one's body to make a cortisol withdrawal from the body. Bad things happen when there is a cortisol deficit, meaning that there is not enough cortisol in the body for one to live everyday because of the amount of cortisol that has already been used up. If a person continues to draw from the bank on an account that is already negative, the situation can become worse and worse as each day passes. Something needs to happen in order to start making appropriate deposits. This can include, taking more medication (stress dosing or an emergency shot), resting, getting adequate physical and emotional support and help, and saying "NO!". Even when in a deficit, many patients have a difficult time saying "no" to an invitation to an event, completing a task, or engaging someone in a way that will use up more energy because of their fear of their loved one's reactions. Much of the time, this fear is warranted because of the actual reactions they have received. Ever heard, "But you volunteered for the bake sale last week! You must be better! Why can't you come to church this week?!". You may have heard something similar.

 

It is important for loved ones to understand the amount of "spoons" it takes for a chronically ill person just to get through every single day. EVERYTHING costs spoons! The amount of spoons paid by each person varies from person to person. It all depends on that individual's situation, body, level of illness, etc. What is common for all, though, is that spoons must be used and eventually those spoons run out. In order to avoid becoming sick or to recuperate from getting sick, the chronically ill patient must evaluate how he/she will use spoons and what tasks can be feasibly completed that day or week. Please understand that when the chronically ill patient says, "YES" to you; he/she is making a conscious choice to use up spoons to meet your need, request, or demand. Talking on the phone, going out to lunch, making dinner, coming to your event all required a sacrifice of another task that day or week. Your friend may have come to lunch with you but that required that she skipped washing the dishes that day or washing her hair, or is even giving up doing something important the next day. Instead of being angry at your friend, please consider why the request is denied at times.

 

spoons-myths.jpg

 

Refer to the attached picture. This is not an exact science but gives some idea of the spoon bank. If you have time, try doing this exercise: Lay out 8-12 physical spoons. As you complete certain tasks throughout the day, use this chart to subtract spoons from your pile. Each and every thing requires a spoon. Taking a shower, washing your hair, cooking, cleaning, watching a movie, going out to lunch, working, writing this post (Ha)! When you are done with your day, notice how many spoons you have left. Observe your feelings after this exercise. You can even do it for a week. Lay out a certain amount of spoons for every day for seven days. If you go into a deficit, borrow spoons from the following day. However, if you do borrow spoons; you must take away a task that you WERE planning to originally do that day. Notice what happens and notice how you feel at the end of the week.

 


 

Can you think of any other tasks that are not on this chart? Help our friends who are doing the activity. List those tasks and assign how many spoons each task will require.

 

 

Spoon Bank

Get out of bed- 1 Spoon

Shower- 2 Spoons

Attend Special Event- 5 Spoons

Go out for Coffee- 4 Spoons

Drive- 4 Spoons

Make a Phone Call- 3 Spoons

Work- 5 spoons

Play Games-3 Spoons

Clean the House- 5 Spoons

Have a Meal- 2 Spoons

Walk the Dog- 4 Spoons

Study- 5 Spoons

Watch TV- 3 Spoons

Ironing- 5 Spoons

Exercise- 4 Spoons

Shopping- 4 Spoons

Read- 2 Spoons

Catch Public Transport- 4 Spoons

Cook- 4 Spoons

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  • 2 weeks later...

I'm glad you wrote this, dear MaryO. I was gone for the weekend, stayed with my brother and sister-in-law, and helped my daughter do last minute things on the 1865 type dress she made and wore to a fashion show. I have been sick all three days since coming home.

 

What I find to be so difficult is that the quality of my life has been so diminished.

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  • 3 weeks later...

Thanks Mary for printing this. I think it is so hard for someone that is well to understand it. Just got home from a 18 day vacation and I am so done out. I am SOOO done out. I came here to find out what would help me get more energy but I think I just used my last spoon up.

Someone please come up with an energy booster! I started selenium and it helped some. Violet

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