Joined: 12/3/2016
Posts: 374
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I just couldn't wait to share this. I just read "The Spoon Theory" by Christine Miserandino. I don't know if I'm the only one who has never had of this but I found it fascinating. She is talking about ME! A spoonie is someone with an "invisible" illness. In this article she is explaining to her friend what it is like to live with a chronic illness. I want a million copies of this article. Her web site explains this theory and offers tons of information support,and understanding.
www.butyoudontlooksick.com
I also found a pin on Pinterest: 23 Spoonie hacks That Can Make Life With Chronic Illness Way Easier.
Hope you find this helpful!
--Lynda
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Joined: 12/15/2011
Posts: 18692
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Lynda, I tried to go to that site and this is what I got:
This site can’t provide a secure connection
butyoudontlooksick.com uses an unsupported protocol.
Iris L.
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Joined: 12/15/2011
Posts: 18692
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Spoon theory
The spoon theory is a disability metaphor and neologism used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. "Spoons" are a visual representation used as a unit of measure used to quantify how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person "recharges" through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.
This metaphor is used to describe the planning that many people have to do to conserve and ration their energy reserves to accomplish their activities of daily living. The planning and rationing of energy-consuming tasks has been described as being a major concern of those with chronic and fatigue-related diseases, illness, or conditions. The theory explains the difference between those who don't seem to have energy limits and those that do. The theory is used to facilitate discussions between those with limited energy reserves and those that do not.[1][2] Because healthy people typically are not concerned with the energy expended during ordinary tasks such as bathing and getting dressed, the theory helps healthy people realize the amount of energy expended by chronically ill or disabled people to get through the day.[3]
Spoons are widely discussed within autoimmune, disability, and other chronic illness online communities,[4][5] The term Spoonie is sometimes used to refer to a person with a chronic illness that can be explained with the spoon theory.[3]
Origin
The term spoons was coined by Christine Miserandino in 2003 in her essay "The Spoon Theory".[2] The essay describes a conversation between Miserandino and a friend. The discussion was initiated by question from the friend in which she asked a question about what having lupus feels like. The essay then describes the actions of Miserandino who took spoons from nearby tables to use as a visual aid. She handed her friend twelve spoons and asked her to describe the events of a typical day, taking a spoon away for each activity. In this way, she demonstrated that her spoons, or units of energy, must be rationed to avoid running out before the end of the day. Miserandino also asserted that it is possible to exceed one's daily limit, but that doing so means borrowing from the future and may result in not having enough spoons the next day. Miserandino suggested the spoon theory can describe the effects of mental illnesses as well.[2]
Special considerations
According to the Spoon theory, spoons (units of energy) may be replaced after rest or a night of sleep. However, people with chronic diseases, such as autoimmune diseases, and various disabilities may have sleep difficulties. This can result in a particularly low supply of energy.[6] Some disabled people may not be fatigued by the disabilities themselves, but by the constant effort required to pass as non-disabled.[7]
This is taken from:
https://en.wikipedia.org/wiki/Spoon_theory
As a systemic lupus patient and chronic fatigue syndrome patient for decades, I know about low energy and trying to preserve my energy. I never heard it referred to as the spoon theory. Thanks for sharing, Lynda.
Another term that I'm quite familiar with is invisible illness or invisible disability. This was used a great deal in my Women's Peer Support Group.
Iris L.
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Joined: 9/12/2013
Posts: 3608
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useful - easy to understand.
thank you both for sharing this.
then there are days when I start with 12 spoons and end up with minus spoons, lost spoons, broken spoons.
I am moving around quite a bit but my house clean out project is beyond me unless one guy becomes willing to rip all the walls and ceilings out of basement room and re-support the upper floor with beams or a wall.
Just the thought of it removes my spoons. I might get it done though. and what else would I be doing anyway?
my illness is not invisible anymore, it is obvious something is wrong, and I use appreciation, smiles, and laughter to order on my own at a restaurant. i did get exactly what I wanted (gain 1 spoon) and did not over eat.
If I get back to sleep tonight I will have a 2 spoon day.
My mother in law came to spend the night, we went out for dinner, it was fantastic and I have seconds in refrigerator.
spoons are a very workable concept! thanks!
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Joined: 5/20/2014
Posts: 4408
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Oh my, I don't think I've had any spoons at all this week! My one son's car got hit by a bullet in Philly! My other son totaled his car. Bad news meeting at work about drastic cuts layoffs etc. due to lack of funding.
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Joined: 12/3/2016
Posts: 374
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OMG llee, I am sooo sorry to hear that you are having such a difficult time right now. I hope that you will be able to unwind and relax a little this weekend. Know that I am thinking of you and wish you all the very best.
--Lynda
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Joined: 12/15/2011
Posts: 18692
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When it rains, it pours, Ilee! I hope your sons are okay. Like Lynda says, I hope you can decompress over the weekend.
There is another concept that I am more familiar with. This is the energy envelope concept. We can use only the amount of energy that is in our envelope; otherwise we will pay for it.
Here is an article about the Energy Envelope.
Recovery from Chronic Fatigue Syndrome by Bruce Campbell
7: The Energy Envelope
To me, the key facts about CFS were the combination of the tight limits it imposed and the high cost of exceeding those limits. For example, before getting sick, I enjoyed hiking, up to 20 miles a day. In the early months of my illness, I could walk for only 15 or 20 minutes a day on my good days, and 30 minutes might send me to bed for an hour.
CFS felt like a rigid and unyielding force, a feeling that initially gave me a sense of powerlessness. The more I fought the limits, the worse I felt. Like many other people with CFS, I learned that if I tried to ignore my body, my symptoms were intensified greatly. After a while, I concluded that my best hope lay in adjusting to my limits. Ironically, yielding to the illness gave me some power. By listening to my body and honoring its limits, I was able to achieve some stability and to begin regaining control of my life.
The Energy Envelope
My transition to this more productive way of living with CFS was aided greatly by two ideas.The first was the concept of the Energy Envelope, which I found in an article in the CFIDS Chronicle, the magazine of the CFIDS Association of America. Titled "Think Inside the Envelope," the article suggested that people with CFS have limited energy, but that they can gain some control over symptoms by keeping the energy they expend within the limits of their available energy. The authors called this "living inside the energy envelope."
For some time, I used this idea in a general way and found it very helpful. I would ask myself whether doing something would take me "outside the envelope" or whether I was living "inside the envelope." I used this idea in combination with monthly evaluations using a Rating Scale I developed. (The scale was based on a similar rating system in Dr. David Bell's book The Doctor's Guide to Chronic Fatigue Syndrome.) My self-ratings changed only a few points each month at best, suggesting that my improvement would be slow. Rating myself was like looking in a mirror. It showed me how far from normal I was and reminded me that I could be active only a few hours a day without increasing my symptoms.
The other idea from my reading was the Fifty Percent Solution, a concept I found in the bookRecovering from Chronic Fatigue Syndrome, by William Collinge. He suggests that people with CFS estimate each day how much they can accomplish and then aim to do half of that. Rather than repeatedly stressing your body by trying to do more than it can tolerate, you aim to limit yourself to a safe level of activity. The unexpended energy is a gift to your body. I appreciated his giving permission to do less and his reframing a lower activity level as something positive.
read more:
http://www.recoveryfromcfs.org/chapter7.htm
My neurologist told me that my MRI results are seen in patients with Alzheimer's Disease, systemic lupus, and chronic fatigue syndrome. He is leaning away from Alzheimer's Disease.
Iris L.
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Joined: 2/24/2016
Posts: 1096
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Limited spoons here also!
Thanks for sharing Lynda and Iris.
Iris, my sister has lupus and she has to actually lay down and rest several times a day, even if it's just for five to ten minutes. Otherwise she can not function.
llee, that is terrible about what happened to both of your sons and the lay offs and pay cuts are very scary. My best friend in PA was just told by her new boss that her pay is being cut $10 an hour. My girlfriend has worked at this lab at the hospital for over 23 years. She is devastated. I hope you will be okay. Saying a prayer for you.
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Joined: 12/15/2011
Posts: 18692
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BlueSkies, your sister sounds like she is improved. I used to spend all day in bed, getting up only for necessities. I'm doing so much better now because I can go for several hours without resting. I hope your sister continues to improve!
Iris L.
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Joined: 5/20/2014
Posts: 4408
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Yes pouring rain! My son was driving the car when the bullet struck the passenger side of the car. Fortunately they are both okay! Oh did I mention that son's new girlfriend might be pregnant?
Despite all I have been thinking how much God must love me and thanking him profusely!
Maybe the decision to retire from work will be made for me and it may not be so bad after all this worrying about staying or leaving and feeling drained and spoon-less all the time?
Over 3 years ago I downsized from 2400 sq ft to 1200 sq ft house. More recently, I have been thinking of buying a cheaper house on one floor so I can pay down some bills and not have to worry about stairs, rent, mortgage or car payment. Of course the thought of moving again does not sit well but it is what it is and I'll just have to get through it.
We all seem to be going through some changes; Blue just moved, Bill may moving, Obrien just retired and Alz + is taking on another major renovation project. We have each other!
Love to all
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