Here is something that help me explain to my husband about the lack of energy I have. Maybe this will explain to yours it's hard to have energy when you lack sleep. I know it's a little different than what we have. But the idea is the same.
The Spoon Theory
by Christine Miserandino
www.butyoudontlooksick.com
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 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 “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".
How do you sleep? Do you snore? Do you wake up through the night? Come join me at the sleep disorders sleep apnea group! We'll talk about it!
http://www.mdjunction.com/sleep-disorders
