The Spoon Theory

[DSM3KIDZ]

I found this Theory at a website called www.butyoudontlooksick.com

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 with an awkward kind of stare, instead of continuing

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

to have 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; **** 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 a

life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and

energy to do whatever they desire, especially young people. For the

most part, they do not need to worry about the effects of their

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

wanted something for her to actually hold, for me to then take away,

since most people who get sick feel a ?loss? of a life they once knew.

If I was in control of taking away the spoons, then she would know

what it feels like to have someone or something else, in this case

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 th

an one spoon, but I figured I would give her a break; I didn?t want to

scare her right away. Getting dressed was worth another spoon. I

stopped her and broke down every task to show her how every little

detail needs to be thought about. You cannot simply just throw clothes

on when you are sick. I explained that I have to see what clothes I

can physically put on, if my hands hurt that day buttons are out of

the question. If I have bruises that day, I need to wear long sleeves,

and if I have a fever I need a sweater to stay warm and so on. If my

hair is falling out I need to spend more time to look presentable, and

then you need to factor in another 5 minutes for feeling badly that it

took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn?t

even get to work, and she was left with 6 spoons. I then explained to

her that she needed to choose the rest of her day wisely, since when

your ?spoons? are gone, they are gone. Sometimes you can borrow

against tomorrow?s "spoons", but just think how hard tomorrow will be

with less "spoons". I also needed to explain that a person who is sick

always lives with the looming thought that tomorrow may be the day

that a cold comes, or an infection, or any number of things that could

be very dangerous. So you do not want to run low on "spoons", because

you never know when you truly will need them. I didn?t want to depress

her, but I needed to be realistic, and unfortunately being prepared

for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that

skipping lunch would cost her a spoon, as well as standing on a train,

or even typing at her computer too long. She was forced to make

choices and think about things differently. Hypothetically, she had to

choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I

summarized that she had to eat dinner but she only had one spoon left.

If she cooked, she wouldn?t have enough energy to clean the pots. If

she went out for dinner, she might be too tired to drive home safely.

Then I also explained, that I didn?t even bother to add into this

game, that she was so nauseous, that cooking was probably out of the

question anyway. So she decided to make soup, it was easy. I then said

it is only 7pm, you have the rest of the night but maybe end up with

one spoon, so you can do something fun, or clean your apartment, or do

chores, but you can?t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was

getting through to her. I didn?t want my friend to be upset, but at

the same time I was happy to think finally maybe someone understood me

a little bit. She had tears in her eyes and asked quietly ?Christine,

How do you do it? Do you really do this everyday?? I explained that

some days were worse then others; some days I have more spoons then

most. But I can never make it go away and I can?t forget about it, I

always have to think about it. I handed her a spoon I had been holding

in reserve. I said simply, ?I have learned to live life with an extra

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

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".

[Dizzy Dame]

Thanks for posting this! I can use this story to describe my daily life to people who ask...before I just told them it was difficult to do anything, but this is so much more comprehensive. thanks again!

[bttrflyamby1981]

Thanks for such a heartfelt story! It made me cry, for you, for me, for anyone with limits.

It aslo helped me to understand my own limits. I still strugle tring to find some sort of balance, but your spoon theory opened my eyes to a new reality. I still need to teach myself what is "spoon" worthy.

Thanks again for sharing such a personal story,

Amber

[JenniferInOhio]

Wow. Wonderful story. Thank you so much for sharing. It brought tears to my eyes...like Amber said, for you, for me and others with limitations.

[maggee]

oh my.....thanks so much for sharing this!

touched me so....and is a wonderful metaphoric way to describe what most of us cannot find words for.

took you alot of time to write it out for us...and you did an awesome job......!!

again...cannot thank you enough for your time, energy put-forth....and giving us all something to capture in words----what we live each day.

God Bless!

Maggee

[Gena]

This story is great. It made me thing about my own "spoons" and what things in my life cost spoons for me.

It would be interesting to get feedback from others about what tasks or events require spoons in your life?

Here are a few of mine...I realized the list was getting too long so I stopped!

Things that cost spoons

? Trying to sleep at night

? Getting up in the night to use the bathroom

? Waking up in the morning / getting out of bed

? Taking a shower, washing hair

? Eating high carb meals, sugary snacks and caffeinated beverages

? Loud noises, arguments, scary or intense movies, stress or excitement of any kind (good or bad)

? Not drinking water /not staying well hydrated throughout the day

? Skipping meals

? Going to work

? Sitting at computer or in one position for any length of time

? Dealing with job pressures and stress

? Speaking in front of large groups

? Lifting heavy objects

? Walking from the parking lot to the store on a hot day

? Standing or walking for long periods of time

? Any activity in the heat

? Cleaning the house

? Watching a movie at a theater

? Exposure to chemicals or synthetic fragrances

? Going to doctors appointments

? Medical tests

Hugs,

gena

[Kitsakatsa]

This is fantastic. This is what it really comes down to for me, because I am the type that will still attempt to use 30 spoons a day instead of 12.

Thank You!

[shannon]

This was such a great story!! A great way to explain chronic illness to healthy people.

Some things that cost me spoons:

Getting out of bed

Brushing my teeth

Washing my face

Showering (even with chair)

Putting on and taking off compression stockings

Stress

Busy surroundings

Forgetting Fluids & Salts

Being woken up by noise (cell phone, alarm, etc)

Sitting up through a whole class

Eating

Not eating

Heat

Typing, sitting at computer

Climbing stairs

Walking & standing

Doing my hair

Getting dressed

Not getting enough sleep

And I gotta agree with Gena when she says.... medical tests and dr. appts.

Again, thanks for sharing the story!

[AJVDK]

Thank you so much for sharing this with us. I have never found a way to tell other what it is like to live with POTS, but wow, that a great way.

Amy

[persephone]

yeah, the spoons theory is a good one, isn't it? I was with someone from class on wednesday after all my bike riding and buzzing about, and I said to her, I'd better not stay out too late as I don't want to use up my energy for the day, I'll pay dearly tomorrow if I do.

And she said "yeah, but you're only sitting in the pub- it's hardly strenuous, is it?" I can't even be bothered to feel annoyed by this type of ignorance any more.

What does annoy me now as far as my university is concerned is that instead of helping me to conserve spoons, they are training me to be helpless. I don't want someone to do everything for me! I want small adjustments to be made so I can carry on doing stuff myself.

Anyway, thought I'd add to the list of things that cost my spoons on bad days

*climbing stairs

*sitting upright

*cooking a meal- this is the killer for my spoon levels

*anything between 4-7

*reading, stretching my mind....incredibly draining for something involving no movement.

[Guest dionna]

i really enjoyed this posts. thank you for sharing.

dionna

[Tammy]

I love the spoon concept. I never know how to explain to people what I go through daily and usually just say that I'm just too tired to do anything, knowing they couldn't understand or want to hear about the struggles I go through hour to hour, but the "spoon" explaination seems more comprehendible to those who have not been in our shoes.

thanks

Tammy

[persephone]

I've just sent the spoon theory to a friend of mine with M.E/CFS;I'd forgotten how good it is.

[Hoobaid]

This is such a great story. I have used the Spoon Theory to explain my Lupus situation to many people, I first heard of this story in the Lupus community.

It works great with Dysautonia as well!

Thank you for sharing with us!

Lori