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ABERLAINE's Photo ABERLAINE Posts: 6,450
10/8/10 6:54 A

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This story is great for explaining fibromyalgia, too. My family is always asking me how many "spoons" I have left.

Nancy
Co-Leader: Fighting Fibromyalgia
Co-Leader: The Breakfast Bunch
Leader: Buffalo Bills
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Dream it. Do it.


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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,841
7/27/09 10:07 A

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Hadn't thought of that, and for many mental health issues that could very well be true. Though I don't know much about the physical issues that attend mental problems, and some mental health issues show up in behavior that is QUITE visible, I think you definitely have a point...

Problem with that, though... some doctors still think fibromyalgia IS a mental health issue~ and we all know how frustrating THAT can be, especially when many doctors (primarily GPs) don't keep up with current research that has shown changes in brain structure that support FM as a serious health issue...

Kathy emoticon

Edited by: I.M.MAGIC at: 7/27/2009 (10:08)
"The real secret of success is enthusiasm..." thanks, Walter P. Chrysler. I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called


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SUKIE23 Posts: 30
7/27/09 9:53 A

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This can also be said of those suffering from mental diseases.

 
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MSPUDGE Posts: 335
7/25/09 4:05 A

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Eeeeeeew! That was a great post-- the Spoon Theory. Made me quickly count the spoons I've lost forever in just the past 12month, more than ever before in my life. It took me a long long time to adjust to/accept the idea the spoons were gone for good. I'm working on my own theory that weight loss not only couldn't hurt, but might miraculously help more than I know. And I pray all the time that I'll find a spoon I lost :) Maybe there's one down there by my feet that I can't see over my belly! Hugs to all of us.

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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,841
7/20/09 1:32 P

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I don't know if it's the time of year or what, but this seems to be cropping up a LOT lately!

Here's a link to the website ABERLAINE posted...
www.butyoudontlooksick.com/navigatio
n/
BYDLS-TheSpoonTheory.pdf

It takes you directly to the article itself. I've purchased a copy to frame on my wall. It really does apply to a lot of what we with FM face every day.

Kathy emoticon

Edited by: I.M.MAGIC at: 7/20/2009 (13:33)
"The real secret of success is enthusiasm..." thanks, Walter P. Chrysler. I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called


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ABERLAINE's Photo ABERLAINE Posts: 6,450
7/19/09 7:28 P

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The original Spoon Theory was about lupus and can be found here: http://www.butyoudontlooksick.com/

Look for "The Spoon Theory" in the left hand column.

Nancy
Co-Leader: Fighting Fibromyalgia
Co-Leader: The Breakfast Bunch
Leader: Buffalo Bills
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Dream it. Do it.


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EAR4MUSIC's Photo EAR4MUSIC SparkPoints: (2,912)
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7/19/09 6:26 P

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what a wonderful way to get through to people that just can not understand where we're coming from. you know for years this fibro illness was never ever discused out in public, but it certanily is now THANK GOD!!! including other debilitating disease's like your MS, like you said people just can't believe that anything can possibly be wrong with us.MS reminds me so much of this fibromyalgia,it mimics it a lot.i have heard and i'm sure you have to that fibro is very likely to turn into MS,their both such horrible illnesses. you don't seem to ever accomplish even the easiest task and i'm sure its even harder on you with MS!! I remember the first time i saw a fibromyalgia commercial, i literaly had tears of joy and a sense of comfort knowing these disease's are finnaly being brought to everybody's attention. i think the public is finnaly saying "WELL THESE PEOPLE REALLY ARE SICK MAYBE THEY AREN'T HYPERCONDRIACTS" MY PRAYERS ARE WITH YOU. emoticon

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7/19/09 3:15 P

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emoticon WOW great!

Peace and Love always.
I don't want to gain the world to lose my soul!

Team Leader of: Feng Shui www.sparkpeople.com/myspark/groups_i
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JOURNIJAE Posts: 852
7/19/09 2:41 P

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This is an excellent way to explain what it is like living with a chronic illness that can be nearly invisible to others. (And MS is often the poster child for the "You sure don't LOOK sick!" illnesses.) Please read it and pass it along to help others better understand those who suffer silently around them....

Welcome To My World

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Multiple Sclerosis and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Multiple Sclerosis. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Multiple Sclerosis. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand. If I can't explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said "Here you go, you have Multiple Sclerosis". She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained 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. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Multiple Sclerosis, being in control.

She grabbed the spoons with excitement. She didn't understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become.

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many "spoons" you are starting with. It doesn't guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I've wanted more "spoons" for years and haven't found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Multiple Sclerosis.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don't just get up. You have to crack open your eyes, and then realize you are late. You didn't sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don't, you can't take your medicine, and if you don't take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn't even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn't want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn't even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow's "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn't want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn't have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained that I didn't even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can't do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn't want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly "Christine, How do you do it? Do you really do this everyday?" I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can't forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared".

It's hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said "Don't worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don't have room for wasted time, or wasted "spoons" and I chose to spend this time with you."

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn't just good for understanding Multiple Sclerosis, but anyone dealing with any disability or illness. Hopefully, they don't take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".




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