Saturday, February 4, 2012
THE STRAW THEORY (FIBROMYALGIA)
The Straw Theory written for Fibromyalgia life
written by Penny Reed
written in regards to fibromyalgia inspired by spoon theory.
I was visiting at my Dads having coffee like I usually do on my level 6 pain days, My Dad asked me for the first time what it felt like to have fibromyalgia/chronic pain I started to ramble on about pills, and aches and pains, but he kept pursuing, and he already knew about the pills, he bought them for me half the time because of not being able to work, I thought he already knew the medical definition of fibromyalgia. Then he looked at me with a face every fibro person knows well, the face of pure curiosity about something no one healthy can truly understand. He asked what it felt like, not physically, but what it felt like to be me, to be in chronic pain 24/7. I was flattered someone in my family actually wants to know and cares enough to want to ask. I said I have a bipolar body Dad, pain along with emotions , having the flu and riding on a roller-coaster all the time.now how do I explain every detail of every day being effected, and give the emotions a fibromyalgia person goes through with clarity. I glanced around the table knowing the spoon theory for lupus, at that moment, the straw theory was born. I grabbed every straw in my Dads kitchen; I said Dad there's a spoon theory but fibromyalgia is different so I’m going to make a straw theory “Here you go, you have fibromyalgia”. He looked at me slightly confused, as anyone would when they are being handed straws for no reason. I explained that the difference in having fibromyalgia and being healthy has to make choices, not even having 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 chronic pain with 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 straws to convey this point. I wanted something for my Dad to actually hold, for me to then take away, since most people who have fibromyalgia feel a “loss” of a life they once knew. If I was in control of taking away the straws, then he would know what it feels like to have someone or something else, in this case fibromyalgia, being in control. He didn’t understand what I was doing, but he is always easy going. I asked my Dad to count his straws. He asked why, and I explained that when you are healthy you expect to have a never-ending supply of “straws”. But when you have to now plan your day, you need to know exactly how many “straws” you are starting with. It doesn’t guarantee that you might not lose some along the way, or all of them , but at least it helps to know where you are starting. He counted out 10 straws., I asked him to list off the tasks of his day, including the most simple. As, he rattled off daily chores, as he’s 62 and retired ,this helps him not lose all his straws compared to when my dad was younger hard working man ; I explained how each one would cost him a straw. And you have to think about what you’re doing tomorrow because muscle groups that are used the most today may hurt more tomorrow. He jumped right into getting ready for the day as his first task of the morning; I cut him off and took away a straw. I had to remind him he’s in pain. I said” No! You don’t just get up. You have to fight the severe stiffness, and then realize you have firm knots in your muscles, causing restricted movement and radiating pain. Can’t move and have to wait for your body to release some muscles. You didn’t sleep well the night before. exhaustion from head to toe, You have to crawl out of bed being in severe pain and stiff, some days takes hours to crawl out, and then you have to make yourself 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 straws for today and tomorrow too.” I quickly took away a straw and he realized he hasn’t even gotten dressed yet. Showering cost him a straw, just for washing his hair and shaving. Reaching high and low that early in the morning could actually cost more than one straw, but I figured I would give him a break; I didn’t want to scare him right away. Getting dressed was worth another straw. I stopped him and broke down every task to show him 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., I have neuropathy I need to wear big clothing to stay off my skin 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 he was starting to understand when he theoretically didn’t even get to do anything, and he was left with 6 straws. I then explained to him that he needed to choose the rest of his day wisely, since when your “straws” are gone, they are gone. Sometimes you can borrow against tomorrow’s “straws”, but just think how hard tomorrow will be with less “straws” and what if you get a bad flare up. I also needed to explain that a person who has chronic pain always lives with the feasible thought that tomorrow may be the day that you have a flare up and can barely even walk to the bathroom and you feel like you’re dying from the flu and so on. Fibromyalgia may not kill you but it sure can make you wish it did on severe flare ups. So you do not want to run low on “straws”, because you never know when you truly will need them. I didn’t want to depress him, 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 he slowly learned that skipping lunch would cost him a straw, as well as standing on a train, or even typing at his computer too long. he was forced to make choices and think about things differently, Difficulty concentrating and retaining new information may seriously interfere with everyday mental tasks. This symptom is referred to as "fibro fog" and he will easily get distracted, loss a straw. Hypothetically, he had to choose not to run errands, so that he could eat dinner that night. When we got to the end of his pretend day, he said he was hungry. I summarized that he had to eat dinner but he only had one straw left. If he cooked, he wouldn’t have enough energy or the pain would be severe to clean the pots. If he went out for dinner, he might be too tired to drive home safely also your will arms hurt so bad driving. Then I also explained that I didn’t even bother to add into this game, that he was going to be in too much pain that cooking was probably out of the question anyway. So he 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 straw, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all. I rarely see him emotional, so when I saw him upset I knew maybe I was getting through to him. I didn’t want my Dad to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. He had asked quietly “Penny, How do you do it? Do you really do this every day?” I explained that some days were worse than others; some days I have more straws than most. But I can never make it go away and I can’t forget about it, I always have to think about it because I always feel Widespread Pain I handed him a straw I had been holding in reserve. It’s hard, the hardest thing I ever had to learn is to slow down, and to relax even if I tried I can’t do everything with chronic pain and exhaustion all the time. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted him to feel that frustration. I wanted him 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 level pain 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 for that day but cannot make plans for other days ahead, we can only know the morning of what may be possible for that day. It is in that lifestyle, the difference between chronic pain and healthy. It is the beautiful ability to not feel pain and to be able to not think and just do. I miss that freedom. I miss never having to count “straws”. After we were emotional and talked about this for a little while longer, I sensed he was sad. Maybe he finally understood. Maybe he realized that he never could truly and honestly say he understands. But at least now he might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to his house and he always has to drive to mine. I gave him a hug when we walked out of the kitchen. I had the one straw 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 straws people waste every day? I don’t have room for wasted time, or wasted “straws” and I chose to spend this time with you.” Ever since this night, I have used the straw theory to explain my life to many people. In fact, my children, family and friends refer to straws all the time. It has been a code word for what I can and cannot do. Once people understand the straw 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 fibromyalgia and chronic pain, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their pain free 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 “straws."