Re: explaining to people (LONG)

[Guest guest]

Hi all,

I really related to this story when I read it. I know it deals with

another disease but the

story seemed to really help me explain to people about the fatigue and

other multiple

issues involved with the Mito.

Hope it helps,

Praying for all of us,

AnnMarie L. - Complex IV (pre-diabetic, hypothyroid, adrenal/endocrine

issues)

Married to my best friend Rick,

Very Busy Mom to (15), (12), Cassandra (6) and

Joe (5) - complex IV, lactic acidosis, CP,

tethered chord syndrome, dysautonomia, and

a smile that never quits :-)

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 Miserandino Butyoudontlooksick.com

[Guest guest]

The story also demonstrates how having someone or something (human or

otherwise, like a helper dog, or even an accommodation) help

you " conserve your spoons " is very important. From the other side of

it, those of us with chronic conditions should keep in mind that our

caregivers may have " more spoons than us " , but they don't have an

unlimited supply either.

The most difficult thing I find is to not use up too much energy when

I'm feeling well, " cutting down my spoon supply " for the next few

days/weeks.

Take care,

RH

> > Hi all,

> > I really related to this story when I read it. I know it deals

> with

> > another disease but the

> > story seemed to really help me explain to people about the

fatigue

> and

> > other multiple

> > issues involved with the Mito.

> > Hope it helps,

> > Praying for all of us,

> > AnnMarie L. - Complex IV (pre-diabetic, hypothyroid,

> adrenal/endocrine

> > issues)

> > Married to my best friend Rick,

> > Very Busy Mom to (15), (12), Cassandra (6) and

> > Joe (5) - complex IV, lactic acidosis, CP,

> > tethered chord syndrome, dysautonomia, and

> > a smile that never quits :-)

> >

> >

> > 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 Miserandino Butyoudontlooksick.com