What it feels like to be sick

[Guest guest]

I found this story on _www.butyoudontlooksick.com_

(http://www.butyoudontlooksick.com/) thanks to someone in one of the support

groups I am a member of.

It explains so much of what I can't explain. I hope you will take the time

to read it. Also on that site are many other valuable tips and stories.

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; 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. 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

“lossâ€

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 “spoonsâ€

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 preparedâ€

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.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 " spoons " . ©

2003 by Miserandino Butyoudontlooksick.com

" Dedicated to making PBC look like pbc.....life is good! "