and andrea -explaining fatigue - Spoon Theory

[Guest guest]

and

Have you ever read the Spoon Theory to explain things? Maybe your husbands

would get a better understanding if you could get them to read it. It makes

things a little clearer for those not affected with the great fatigue. It's

long but a good explanation. Here's a copy.

Be well, Arlene

The Spoon Theory or what a day with MS feels like

I just finished reading this and knew I had to share it with the world! Thanks

to Lin for sharing it with me. It is a wonderful way to explain what it is like

living with a chronic illness that can be nearly invisible to others. (And MS

is often the poster child for the " You sure don't LOOK sick! " illnesses.) Please

read it and pass it along to help others better understand those who suffer

silently around them. I don't know who this " " is, but I thank her;

and even though she has Lupus and not MS, they are sister disorders and

everything she writes about the " Spoon Theory " absolutely applies to us! Read

on... welcome to my world.

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 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 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 "

It's 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 " .

With thanks to the author, a woman known only to us as " " .

-------------- Original message --------------

> Hi,

> I'm in the same boat you are. I can't do it all any more. I get home from work

> and I can boil water for dinner. Pretty pathetic huh? I'm not sure how to get

> someone to understand how you feel. Just try telling him? Describe it? It took

> my husband a while but now he understands. I hope you don't have ms or

something

> worse. Good luck,

>