Fatigue, spoon theory

[Guest guest]

Someone posted this on another support I belong to. I really liked it and

thought I share it with you. Let me know if you can't access the attachment.

I'll e-mail the entire essay if I need to. I've shared this with my family, no

friends yet. I think people just get tired of people who are chronically sick.

We look OK to them (not any more, though) and no one really knows this disease.

It's not like cancer or lupus or MS. Honestly, hardly anyone I ever mention

Klug or Walter Payton to even knows who they are any more. I don't want to

wish this on anyone, but we need some more celebrity. LOL Cheryl 50 PSC, UC

OK I can't open up my attachment tool. So I'm posting it here.

The individual who wrote this article has Lupus, but it could just as

easily have been written about Fibromyalgia, Chronic Fatigue,

Multiple Scleroses, forms of arthritis, and so many other " invisible "

illnesses.

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