May 12th is M.E. awareness day...it's a condition, I and many many others suffer from...
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A M.E. Fairytale
A Bedtime Story
There was once a young girl called Tamsin. She didn't have a wicked witch of a stepmother, she didn't have two ugly trogs for sisters, she didn't have seven vertically challenged men for friends and she didn't even marry a handsome prince (though her boyfriend was as prince-like as they come!) She was 18 years old...
... so what should she of been doing? Clubbing? Working? Shopping? Pubbing? Attending college? Partying? Going to church? Gossiping? Having the time of her life? Even living a life?
But what did she do? Sleep, sit, lie, listen and watch.... She couldn't work or do the clubs - if not extra especially careful with alcohol and certain foods; she would land herself back in the paramedics care. And though she could occasionally go shopping, she needed someone to take her and push her wheelchair, someone who could take her home at a moments notice. At a time when independence ought to be growing steadily, her reliance on other people was stifling and she couldn't help feeling a burden. She spent most of her time sitting by the window wishing to be able to be outside in the world but knowing that even if she was well enough to go outside for 10 minutes that she couldn't even do it alone.
But Why? This girl has M.E. (myalgic encephalopathy). It is collectively known as C.F.S.(chronic fatigue syndrome) or P.V.F.S. (post viral fatigue syndrome).
All right so what does that mean? Most people think it is just about being tired. Others think it is all in the mind.
Its not....
So what is it? No one actually knows for sure and even the fairy godmother cannot wave her magic wand to make people better. With over 150,000 affected in the United Kingdom alone, it is definitely not just make believe. Reduced blood flow to the brain causes a whole array of unpleasant symptoms But even those with a great imagination can not imagine how it feels. She often looks perfectly fine and they assume she is feeling great but the truth be told she feels terrible, she can not even remember how it feels to be well. So she smiles through the pain - she doesn't like a fuss.
So what does she feel? Everyday she wakes with a "hangover" or "fluey feeling". She experiences dizziness, headaches, chest pains, palpitations, tachicardia (rapid heart beat) abdominal pains, severe muscular pain and weakness, excruciating limbs, swollen glands, sensitivity to light - she often wears sun glasses in the house, even at night! She is sensitive to sound - the slightest sound can echo painfully a thousand times......She experiences temperature disturbances and shivers and shakes when wrapped up warm and sometimes has to wear a hat and gloves in bed! Other times however, she feels like she will explode with hear even when wearing next-to-nothing! Then there is an exhaustion, far beyond anything ever experienced by any healthy individual, a dreadful malaise and fatigue following the slightest mental or physical exertion. She suffers panic attacks and hyperventilation, severe shaking episodes, extreme weakness in hands, arms and legs - she frequently can not hold a pen, type, brush her hair, dress / undress herself or even clean her own teeth. She suffers ear and eye ache, terrible nausea, loss of appetite, weight change, insomnia, cognitive difficulties - she finds it hard to concentrate and often can't understand what is being said to her, sometimes she must read the simplest sentence over and over until it makes any sense at all. She cannot walk far without walking sticks and often collapses when her legs buckle beneath her. The only way for her to climb the stairs is to crawl - not at all degrading when one is eighteen! Sometimes she is unable to feel parts of her own body. And that's only the half of it ..................
If there is no cure, what does she want? She wants to raise awareness and understanding for the story of her's and many other people's lives. It is not make believe for, unlike sleeping beauty, a simple kiss will not revive the unfortunate victims. If that was the case, her handsome prince would have cured her long ago but even he cannot help. Like the others, all he can do is watch and feel helpless.
All she wants is for people to understand how she feels - she is NOT JUST TIRED! But she smiles to make the passers by feel better for she knows that one day she will reach the top of the beanstalk and she will be a stronger and better person for it...
This is not just a fairy tale...
It's more than tired when you have got M.E.
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 M.E. 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 M.E.. 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 M.E.. 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 M.E.”. 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 M.E., 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 M.E..
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 “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 M.E., 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 Christine Miserandino Butyoudontlooksick.com
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