The Spoon Theory / How to explain your fatigue to others!

[Guest guest]

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory\

-written-by-christine-miserandino/            

The Spoon Theory

by Miserandino www.butyoudontlooksick.com

<<<<<<<<<   she is talking with a friend, EDITED as is long ) >>>>>>>>

 She asked what it felt like, not physically, but what it felt like to be me,

to

be sick.

 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 Lupusâ€. 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. So for my explanation, I used spoons to convey this point.

>>>>>>>>>>>. 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

“spoonsâ€.

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 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 “spoonsâ€, but just think

how

hard tomorrow will be with less “spoonsâ€. 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 “spoonsâ€, 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.â€

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 “spoonsâ€.

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.â€

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 “spoonsâ€.

© Miserandino

[Guest guest]

This is awesome, have used it, have passed it to firends who have then used

it - people just 'get it' plus it gives a nice in joke to us, I have a

friend who loves asking how my spoons are

On Sun, Aug 22, 2010 at 1:24 PM, Joanne Cathcart

<jjcathcart2001@...>wrote:

>

>

>

>

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory\

-written-by-christine-miserandino/

>

>

> The Spoon Theory

> by Miserandino www.butyoudontlooksick.com

> <<<<<<<<< she is talking with a friend, EDITED as is long ) >>>>>>>>

> She asked what it felt like, not physically, but what it felt like to be

> me, to

> be sick.

> 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. So for my explanation, I used spoons to convey this point.

>

> >>>>>>>>>>>. 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

> 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”.

> © Miserandino

>

>