⁉️ Cushing’s Myths and Facts: Even Though You Are Chronically Ill, You Should Have The Same Amount Of Energy Every Day…

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!

myth-busted

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-mythsRefer 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.

You can view “The Spoon Theory” in its entirety at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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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⁉️ Cushing’s Myths and Facts: “You should be all better by now!”

Myth: “You should be all better by now! You found out what was wrong, you got the surgery, it’s been quite some time, and you are STILL not better?! You SHOULD have gotten better by now!” Chronic illness follows the same pattern as normal illness. You get diagnosed, treated, and then go back to a state of recovery, eventually leading you back to a state of “normal health”.

 

Fact: Chronic illness is called chronic illness for a reason, because it is chronic! Wayne Dyer addresses this myth: We usually expect to follow a pattern that is characteristic of most illness. “The person has an illness and falls from the path of normal health. Then, comes a period of diagnosis and treatment followed by a period of convalescence (the general recovery of health and strength after illness). Finally, the person returns to good health again” (p. 251).

The person is supported, typically, by family, friends, neighbors, and their church community during the illness, treatment, and recovery, assuming that at some point the person will return to normal health and their assistance will no longer be needed (p. 251).

However, in the case of the chronically ill, a different cycle occurs. In the chronically ill, the person loses his normal health. He goes through a period of treatment and sometimes recovers. “But for a number of reasons, depending on the illness, the person does not return to a condition of normal health but continues in a fluctuating pattern of chronic ill health. The person may have periods when he feels better or worse, but at no time does he ever return to complete good health.” (p. 252).

According to Dyer (1990), “Unfortunately, family members, friends, and neighbors do not know how to respond to this unfamiliar pattern, and they usually shift their attention away from the chronically ill person as others with the more normal cycle of sickness occupy their attention” (p 252). At this point, the person with the chronic illness feels a lack of support, understanding, and help. This can lead to increased pain, depression, and anxiety.

It is very difficult for family members, such as spouses, to deal with the person with chronic illness. “Chronic illness can disrupt and pide a family, or it can provide the family with an opportunity to grow in understanding, patience, sacrifice, and love for one another” (Dyer, 1990, p. 256).

For the chronically ill person and his family, the friends, neighbors, and church can either be a source of support and help or elicit feelings of neglect, rejection, and misunderstanding. Most people help at the beginning of the illness, but then become confused when the person doesn’t get better, so they withdraw their attention (p. 256).

Here are some ideas for helping the chronically ill person and family:

• Discuss in some detail with the person how his illness is affecting him and his family and find out what his needs are

• Make short visits to not overtire or over stimulate the patient

• Send a card or make a short phone call to the sick person

• Look for ways to help with young children

• Send a small gift

• Avoid saying things to make the person feel pressured such as “I hope you can come back to church every Sunday now”

• Don’t ask, “What can I do to help?” People don’t like to have to ask for support. Express sensitivity and go ahead and do something (p. 258).

Reference: Dyer, W.G. (1990). Chronic Illness. In R. L. Britsch & T.D. Olson (Ed.), Counseling: A guide to helping others, volume 2, 250-259.

Please take the time to view this video on “Chronic Illness versus Normal Illness” and share with your loved ones:

🦓 From a Past Blogging Challenge: Cushing’s Awareness Challenge ~ Danielle, Day 4

From Danielle’s Blog:  http://www.lifewithcushings.com/2017/04/cushings-awareness-challenge-day-4.html

I have often said, I wish I had cancer instead. Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?

It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was. I wouldn’t be questioned by my boss when I called in sick. My friends and family would be more supportive. My doctors wouldn’t question my symptoms.

Maybe my life would be easier.

Read the rest of the post at http://www.lifewithcushings.com/2017/04/cushings-awareness-challenge-day-4.html

⁉️ Myths and Facts about Cushing’s: Even Though You Are Chronically Ill, You Should Have The Same Amount Of Energy Every Day…

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!

myth-busted

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-mythsRefer 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.

You can view “The Spoon Theory” in its entirety at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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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⁉️ Myths and Facts about Cushing’s: “You should be all better by now!”

Myth: “You should be all better by now! You found out what was wrong, you got the surgery, it’s been quite some time, and you are STILL not better?! You SHOULD have gotten better by now!” Chronic illness follows the same pattern as normal illness. You get diagnosed, treated, and then go back to a state of recovery, eventually leading you back to a state of “normal health”.

 

Fact: Chronic illness is called chronic illness for a reason, because it is chronic! Wayne Dyer addresses this myth: We usually expect to follow a pattern that is characteristic of most illness. “The person has an illness and falls from the path of normal health. Then, comes a period of diagnosis and treatment followed by a period of convalescence (the general recovery of health and strength after illness). Finally, the person returns to good health again” (p. 251).

The person is supported, typically, by family, friends, neighbors, and their church community during the illness, treatment, and recovery, assuming that at some point the person will return to normal health and their assistance will no longer be needed (p. 251).

However, in the case of the chronically ill, a different cycle occurs. In the chronically ill, the person loses his normal health. He goes through a period of treatment and sometimes recovers. “But for a number of reasons, depending on the illness, the person does not return to a condition of normal health but continues in a fluctuating pattern of chronic ill health. The person may have periods when he feels better or worse, but at no time does he ever return to complete good health.” (p. 252).

According to Dyer (1990), “Unfortunately, family members, friends, and neighbors do not know how to respond to this unfamiliar pattern, and they usually shift their attention away from the chronically ill person as others with the more normal cycle of sickness occupy their attention” (p 252). At this point, the person with the chronic illness feels a lack of support, understanding, and help. This can lead to increased pain, depression, and anxiety.

It is very difficult for family members, such as spouses, to deal with the person with chronic illness. “Chronic illness can disrupt and pide a family, or it can provide the family with an opportunity to grow in understanding, patience, sacrifice, and love for one another” (Dyer, 1990, p. 256).

For the chronically ill person and his family, the friends, neighbors, and church can either be a source of support and help or elicit feelings of neglect, rejection, and misunderstanding. Most people help at the beginning of the illness, but then become confused when the person doesn’t get better, so they withdraw their attention (p. 256).

Here are some ideas for helping the chronically ill person and family:

• Discuss in some detail with the person how his illness is affecting him and his family and find out what his needs are

• Make short visits to not overtire or over stimulate the patient

• Send a card or make a short phone call to the sick person

• Look for ways to help with young children

• Send a small gift

• Avoid saying things to make the person feel pressured such as “I hope you can come back to church every Sunday now”

• Don’t ask, “What can I do to help?” People don’t like to have to ask for support. Express sensitivity and go ahead and do something (p. 258).

Reference: Dyer, W.G. (1990). Chronic Illness. In R. L. Britsch & T.D. Olson (Ed.), Counseling: A guide to helping others, volume 2, 250-259.

Please take the time to view this video on “Chronic Illness versus Normal Illness” and share with your loved ones:

🦓 From a Past Blogging Challenge: Cushing’s Awareness Challenge – Day 4

From Danielle’s Blog:  http://www.lifewithcushings.com/2017/04/cushings-awareness-challenge-day-4.html

I have often said, I wish I had cancer instead. Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?

It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was. I wouldn’t be questioned by my boss when I called in sick. My friends and family would be more supportive. My doctors wouldn’t question my symptoms.

Maybe my life would be easier.

Read the rest of the post at http://www.lifewithcushings.com/2017/04/cushings-awareness-challenge-day-4.html

Myth: Even Though You Are Chronically Ill, You Should Have The Same Amount Of Energy Every Day…

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!

myth-busted

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-mythsRefer 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.

You can view “The Spoon Theory” in its entirety at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki