The Spoon Theory

[Guest guest]

Wow! How true.....What a great example how life is living with an

illness...think I'll forward this along....

Thanks Sheila!

The Spoon Theory

Here's something a friend of mine from another group sent me. I

think it's really good. Sheila

The Spoon Theory My best friend Jenni 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 this time, with a kind of stare, instead of

continuing the conversation. She then asked me out of the blue what

it felt like to have Fibromyalgia 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 Fibromyalgia. She came

to doctors with me, she saw me when I could hardly walk. Jenni 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 Fibromyalgia. 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 " Jenni, here you go, you have

Fibromyalgia. " 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 choice, 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 Fibromyalgia, 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 Fibromyalgia.

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 have to get up and start another day

all over again. You didn't sleep well the night before. You have to

crawl out of bed, and then you have to might have to make your self

something to eat before you can do anything else, because if you

don't, your medicine might make you sick, 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 would 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 my knees ache that day, I need to wear

long pants or jeans because I need to stay warm and so on. If I have

bags under my eyes, from not getting enough sleep the night before,

I need to spend more time to look presentable and could cost me

another spoon. Then you need to factor in another 5 minutes for

feeling badly that it took you an hour or more 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 six 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 mean even getting out of bed, could cost you two of your

spoons. 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 sitting and just 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 sometimes felt so nauseous from

medications, that cooking was probably out of the question anyway.

So she decided to make soup, it was easy. I then said it is only 6

pm, 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 and if you had used your last spoon to make

the soup, the rest of the evening would mean you couldn't do

anything at all except maybe get those clothes off you had put on

that day, and go to bed.

I rarely see Jenni 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 " , 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, " Jenni, I have learned to live life with an extra spoon in

my pocket, in reserve. You need to always be prepared. "

Its 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, how I feel at that moment, 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 " Jenni, 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 Fibromyalgia, 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. "

[Guest guest]

it made me realize, , that what I go through in dealing with a chronic

illness is not so bad when you look at what others are going through. I am very

fortunate and grateful! hugs, Sheila

susan hodgson <suser@...> wrote:Wow! How true.....What a great example

how life is living with an illness...think I'll forward this along....

Thanks Sheila!

The Spoon Theory

Here's something a friend of mine from another group sent me. I

think it's really good. Sheila

The Spoon Theory My best friend Jenni 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 this time, with a kind of stare, instead of

continuing the conversation. She then asked me out of the blue what

it felt like to have Fibromyalgia 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 Fibromyalgia. She came

to doctors with me, she saw me when I could hardly walk. Jenni 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 Fibromyalgia. 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 " Jenni, here you go, you have

Fibromyalgia. " 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 choice, 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 Fibromyalgia, 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 Fibromyalgia.

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 have to get up and start another day

all over again. You didn't sleep well the night before. You have to

crawl out of bed, and then you have to might have to make your self

something to eat before you can do anything else, because if you

don't, your medicine might make you sick, 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 would 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 my knees ache that day, I need to wear

long pants or jeans because I need to stay warm and so on. If I have

bags under my eyes, from not getting enough sleep the night before,

I need to spend more time to look presentable and could cost me

another spoon. Then you need to factor in another 5 minutes for

feeling badly that it took you an hour or more 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 six 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 mean even getting out of bed, could cost you two of your

spoons. 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 sitting and just 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 sometimes felt so nauseous from

medications, that cooking was probably out of the question anyway.

So she decided to make soup, it was easy. I then said it is only 6

pm, 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 and if you had used your last spoon to make

the soup, the rest of the evening would mean you couldn't do

anything at all except maybe get those clothes off you had put on

that day, and go to bed.

I rarely see Jenni 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 " , 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, " Jenni, I have learned to live life with an extra spoon in

my pocket, in reserve. You need to always be prepared. "

Its 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, how I feel at that moment, 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 " Jenni, 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 Fibromyalgia, 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. "

[Guest guest]

......I didn't know I needed tissuses to read this!!! VERY well put...... BRATlecody <lecody@...> wrote: One way to explain what being sick is like to the Healthy. The Spoon Theory 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 this time, with a kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus 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 Lupus. 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 Lupus. 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 Lupus". 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 choice, 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 Lupus, 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 Lupus. 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 ", 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" Its 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 Lupus, 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". © 2003 by Butyoudontlooksick.com

[Guest guest]

Thisis wonderful and we can all relate to this . perhaps we should all print

it out forour families.

[Guest guest]

thank you for posting this . It s something everyonre who has a n ill family

member should read. cathy from ma

[Guest guest]

Dear Becky, I never get tired of hearing this story. I can't tell you how

many people I've passed it on too and who have told me for the first time

they understand chronic illness. It's definitely a keeper when it comes to

pain articles. I'm glad you are posting it again. Love, Fran

This is a story that is about a young lady with Lupus, I have carried it for

years. It relates to anyone with chronic pain. I thought I would post it

to the list again. I originally read it on the PA list, but with all the new

members, I thought it would be good to see it again.

Becky

_____

THE SPOON THEORY

My best friend Jenni 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 this time, with a kind of stare, instead of continuing the

conversation. She then asked me out of the blue what it felt like to have

Lupus 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

Lupus. She came to doctors with me, she saw me walk with a cane, and throw

up in the bathroom. Jenni 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 Lupus. 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 " Jenni, here you go, you have Lupus " . 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 choice, 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 Lupus, 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 Lupus.

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 Jenni 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 " , 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, " Jenni, I have

learned to live life with an extra spoon in my pocket, in reserve. You need

to always be prepared "

Its 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 " Jenni, 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 Lupus, 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 " .

C 2003 by Butyoudontlooksick.com

[Guest guest]

This great! It explains our lives clearly! I am printing it off

for my friends and family.

Sharon

>

> This is a story that is about a young lady with Lupus, I have

carried it for

> years. It relates to anyone with chronic pain. I thought I

would post it

> to the list again. I originally read it on the PA list, but with

all the new

> members, I thought it would be good to see it again.

>

> Becky

>

> _____

>

>

>

>

> THE SPOON THEORY

> My best friend Jenni 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 this time, with a kind of stare, instead of continuing

the

> conversation. She then asked me out of the blue what it felt like

to have

> Lupus 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

> Lupus. She came to doctors with me, she saw me walk with a cane,

and throw

> up in the bathroom. Jenni 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 Lupus. 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 " Jenni, here you go, you have Lupus " . 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 choice, 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 Lupus, 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 Lupus.

>

> 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 Jenni 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 " , 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, " Jenni,

I have

> learned to live life with an extra spoon in my pocket, in reserve.

You need

> to always be prepared "

>

> Its 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 " Jenni, 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 Lupus, 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 " .

>

> C 2003 by Butyoudontlooksick.com

>

>

>

>

>

>

>

[Guest guest]

I did read this on her site! It's really a great analogy and I like that it comes from her young adult perspective ---- gives me insight as to where my daughter may be, physically speaking, in her college years. Definitely a must read for all people dealing with chronic illness in their lives...... thanks! -HadleyJo Anne <jandjstewart@...> wrote: Is anyone familiar with The Spoon Theory? It's the story of a young woman, Miserandino - who is trying to explain to her best friend what

it's like to live with Lupus (or any chronic illness). She uses a "bouquet" of spoons to describe how she has to plan and "save" for every activity of her day. The analogy is so vivid and really helped me put into clearer thought what life with my daughter is like. I know I will use this to help explain to family and friends who have no idea what living with JA is like. Here's the link - please take time to read her story. www.butyoudontlooksick.com/the_spoon_theoryJo Anne - Lianna, just turned 5 -ERA

[Guest guest]

We adopted this idea and changed it a little bit for my son. We use

the same idea, but instead of spoons, we use hearts -- the kind that

show how much strength you have when you play video games. He starts

every day with 5 hearts. Luckily, we've been ending the day with a few

herts lately, which is always a good sign.

On 7/19/07, Hadley Messner <hmessner@...> wrote:

>

>

>

>

>

>

> I did read this on her site! It's really a great analogy and I like that it

> comes from her young adult perspective ---- gives me insight as to where my

> daughter may be, physically speaking, in her college years. Definitely a

> must read for all people dealing with chronic illness in their lives......

> thanks! -Hadley

>

> Jo Anne <jandjstewart@...> wrote:

>

>

> Is anyone familiar with The Spoon Theory? It's the story of a young

> woman, Miserandino - who is trying to explain to her best

> friend what it's like to live with Lupus (or any chronic illness).

> She uses a " bouquet " of spoons to describe how she has to plan

> and " save " for every activity of her day.

> The analogy is so vivid and really helped me put into clearer thought

> what life with my daughter is like. I know I will use this to help

> explain to family and friends who have no idea what living with JA is

> like. Here's the link - please take time to read her story.

>

> www.butyoudontlooksick.com/the_spoon_theory

>

> Jo Anne - Lianna, just turned 5 -ERA

>

>

>

[Guest guest]

,

What a great idea! I was trying to think of a way to get my five

year old daughter to understand this concept so she can tell us when

her " spoons " are dwindling away and what activities she would like

to " spend " her spoons on. I like the hearts!

Jo Anne

> >

> >

> > Is anyone familiar with The Spoon Theory? It's the story of a

young

> > woman, Miserandino - who is trying to explain to her

best

> > friend what it's like to live with Lupus (or any chronic illness).

> > She uses a " bouquet " of spoons to describe how she has to plan

> > and " save " for every activity of her day.

> > The analogy is so vivid and really helped me put into clearer

thought

> > what life with my daughter is like. I know I will use this to help

> > explain to family and friends who have no idea what living with

JA is

> > like. Here's the link - please take time to read her story.

> >

> > www.butyoudontlooksick.com/the_spoon_theory

> >

> > Jo Anne - Lianna, just turned 5 -ERA

> >

> >

> >

>

[Guest guest]

This is really great... ive heaed it in relation to marbles as well.

I read this to one of the young adult sessions at the San Diego AJAO conference as well.

Issadora (collecting spoons)

On 7/19/07, Jo Anne <jandjstewart@...> wrote:

,What a great idea! I was trying to think of a way to get my five year old daughter to understand this concept so she can tell us when her " spoons " are dwindling away and what activities she would like to " spend " her spoons on. I like the hearts!Jo Anne> >> >> > Is anyone familiar with The Spoon Theory? It's the story of a young> > woman, Miserandino - who is trying to explain to her best> > friend what it's like to live with Lupus (or any chronic illness).> > She uses a " bouquet " of spoons to describe how she has to plan

> > and " save " for every activity of her day.> > The analogy is so vivid and really helped me put into clearer thought> > what life with my daughter is like. I know I will use this to help

> > explain to family and friends who have no idea what living with JA is> > like. Here's the link - please take time to read her story.> >> > www.butyoudontlooks

ick.com/the_spoon_theory> >> > Jo Anne - Lianna, just turned 5 -ERA> >> >> >> -- " I am not sick. I am broken. But I am happy as long as I can paint. " --Frida Kahlo

[Guest guest]

Jo Anne,thank you so much for sharing this story! My daughter has felt that her dad has no concept of what she deals with everyday, the pain and fatigue -she doesn't complain, so he it is easy for him to be in denial - today I shared this story with her and told her perhaps if she shared it with her dad, it would help him understand her world a little. Thanks again for sharing it. (amanda, 17, arthritis)Jo Anne <jandjstewart@...> wrote: Is anyone familiar with The Spoon Theory? It's

the story of a young woman, Miserandino - who is trying to explain to her best friend what it's like to live with Lupus (or any chronic illness). She uses a "bouquet" of spoons to describe how she has to plan and "save" for every activity of her day. The analogy is so vivid and really helped me put into clearer thought what life with my daughter is like. I know I will use this to help explain to family and friends who have no idea what living with JA is like. Here's the link - please take time to read her story. www.butyoudontlooksick.com/the_spoon_theory Jo Anne - Lianna, just turned 5 -ERA

Park yourself in front of a world of choices in alternative vehicles.Visit the Auto Green Center.

[Guest guest]

This was a great story. Thank you for sharing this. After I read it, I forwarded the link to Hannah. I thought she could simplify this when talking about her own struggles, both with arthritis and her asthma as some days when her asthma is flaring are as big a struggle as when her joints hurt. She loved the story and has converted it to money. Her friends (and some family members) can then understand that everything she does on a bad day "costs" her and she "pays" for her choices.

Sending prayers & happy thoughts,

Beth :-)

Re: The Spoon Theory

Jo Anne,thank you so much for sharing this story! My daughter has felt that her dad has no concept of what she deals with everyday, the pain and fatigue -she doesn't complain, so he it is easy for him to be in denial - today I shared this story with her and told her perhaps if she shared it with her dad, it would help him understand her world a little. Thanks again for sharing it. (amanda, 17, arthritis)Jo Anne <jandjstewart@ hotmail.com> wrote:

Is anyone familiar with The Spoon Theory? It's the story of a young woman, Miserandino - who is trying to explain to her best friend what it's like to live with Lupus (or any chronic illness). She uses a "bouquet" of spoons to describe how she has to plan and "save" for every activity of her day. The analogy is so vivid and really helped me put into clearer thought what life with my daughter is like. I know I will use this to help explain to family and friends who have no idea what living with JA is like. Here's the link - please take time to read her story. www.butyoudontlooks ick.com/the_ spoon_theoryJo Anne - Lianna, just turned 5 -ERA

Park yourself in front of a world of choices in alternative vehicles.Visit the Auto Green Center.

[Guest guest]

Thanks for site. Read the Spoon Theory.. it is exactly how you feel with hep c and liver disease Newton in Nevada From: AngelBskts <AngelBskts@...>Subject:

The spoon theoryHepatitis CSupportGroupForDummies Date: Thursday, August 21, 2008, 6:47 AM

Another site that I am on had this in one of the threads. Not sure if anyone has seen it or not but wanted to share. It refers to Lupus but I felt it applies to how my husband's Hep C affects him. The original thread also listed this site: http://butyoudontlo oksick.com/

The Spoon Theory

There was a lady named who made explaining chronic illness a whole lot easier for the rest of us. And, oddly, it referred to spoons. She was sitting in a diner one night with her friend when her friend asked her what having Lupus was really like. She then proceeded to take every spoon from the diner tables, and handed them to her friend, telling her friend that she now had lupus. had her friend go through her daily routine, but broke down steps that take extra energy for people with chronic illness. Her friend said that she would first wake up and get ready. then stopped her, saying that first she had to find the energy to get out of bed. And with that, she took a spoon from her friend. The spoons represented her energy level, kind of

like what you see in video games (like the hearts in Zelda). As she went through her routine, she came to the end of her day. She was down to one spoon, but she still had to make something to eat OR take her medicine. Without the food, she couldn't hold down her medicine and without her medicine, she could become very sick.It's sad, but such decisions have to be made every day for some people. We can never tell how many "spoons" we have in a day. Some days we can have 20 and the very next we can have 2. I believe that with more awareness, maybe we could have some extra spoons that we didn't even know were there.

Get the MapQuest Toolbar. Directions, Traffic, Gas Prices More!

[Guest guest]

Bev -

This is great - I have been a member of this site for awhile - it's

great - they will send you emails with things that are helpfull and

wise to buy for people that have a chronic illness.

I have used the spoon theory to give to friends and family - it sure

has helped them understand more what we go thru on a daily basis.

Thanks -

Diane

[Guest guest]

For those of you who have relatives who don't understand what it means

to live with a chronic illness, have them read " The Spoon Theory. "

Here is a link:

http://tinyurl.com/6ovzrn

Sue

[Guest guest]

Wow! What a powerful story. I can so relate to that myself and for my children.

I will be sharing this with those in our lives.

> >

> > Macey let me know about a site today that her Starbright friends told her

about. ButYouDontLookSick.com

> >

> > On it there is an article called The Spoon Theory. In it the author

describes living with a chronic disease (in her case Lupus).

> >

> >

http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpo\

onTheory.pdf

> >

> > Ursula

> > Mom to (17) and Macey (14)

> > http://www.caringbridge.org/visit/maceyholleman

> > http://maceysjourney.blogspot.com

> >

> >

> >

> >

> >

[Guest guest]

Wow! What a powerful story. I can so relate to that myself and for my children.

I will be sharing this with those in our lives.

> >

> > Macey let me know about a site today that her Starbright friends told her

about. ButYouDontLookSick.com

> >

> > On it there is an article called The Spoon Theory. In it the author

describes living with a chronic disease (in her case Lupus).

> >

> >

http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpo\

onTheory.pdf

> >

> > Ursula

> > Mom to (17) and Macey (14)

> > http://www.caringbridge.org/visit/maceyholleman

> > http://maceysjourney.blogspot.com

> >

> >

> >

> >

> >