BUT YOU DON'T LOOK SICK

Here is an exerpt from a wonderful explanation on how lupus drains our energy.  To read the story in it's entirety please go to

“quote from story here”

-          The Spoon Theory 

By: Christine Miserandino

www.butyoudontlooksick.com

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 havesomeone or something else, in this case Lupus, being in control.  Here is an exerpt........

 

 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 getmore, 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 badlythat it took you 2 hours to do all this.

 

In her story Christine goes on to say...

 

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.

 

What really got me was when Christine said......

 

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".

 

Christine's Spoon Theory is amazing and there is no one who has Lupus who does not use this spoon analogy.

 

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".

 

This was not written by me but was found on the internet.The story is called "The Spoon Theory and was written by Christine Miserandino for the entire test please go to www.butyoudontlooksick.com.   I believe that it exactly explains how I (and how all of us who have Lupus) feel during a flare.  Or just how we live our lives.  I am feeling that way today.  Just the simple act of getting up every day can be torture.  So, please do not be deceived by the wayI look. 

What is lupus?

Lupus is a chronic autoimmune ('auto' meaning 'self') disease in which the body's immune system becomes 'hyperactive' and attacks the body's normal tissues. It is much like the body being allergic to itself.

Okay, now I am tired.  I'm running out of spoons.  You see even a small task such as writing in this journal has wipped me out.  Now I need to go rest for a little while.

Bunches of hugs and love…LuAnne