 I am just coming off one of the worst weeks of my life... with a re-flair of an illness (I thought was kicked), some professional set-backs, a few financial challenges ... and then our 17 year old son hits a telephone pole and nothing else seemed relevant ...  Then just as suddenly...everything was relevant and in crisis mode... He is a good kid, a new driver, coming back after taking his girlfriend home, it was a late Saturday afternoon (after his varsity baseball game), he was tired and closed his eyes for a second... His last thought before hitting the pole was "Dad is going to kill me"  The worst feeling in the world is driving to the scene of an accident involving your child, the 5 miles seem like hundreds... and then you see the flashing lights and loose all rational control until you hold your "safe" child in your arms . My husband and I were second guessing every decision, questioning our judgment, his abilities. He is fine... not a scratch on him, the car and the pole (thankfully it was old and broke in half) however are both totaled. The real kicker was that my "fibro-fog" lead me to forget some critical things (insurance stuff) prior to the accident that made the situation much more complicated & potentially financially devastating. After hours of hysterical crying... I mustered up enough braincells to correct the situation. My trust in myself was gone, I was physically, emotionally & spiritually bankrupt. Forgetting the one thing that really matters; we still had both of our sons (above). And today I get this e-mail ... ******************************* ELIMINATING THINGS ABOUT MYSELF AND MY LIFE THAT I HAVE DETERMINED ARE UNACCEPTABLE I am now receptive to the idea that . . . God's inner vision of me can be the outer vision I create for myself. | |
There is nothing you need to do to make yourself more acceptable to God. You don't have to work harder, nor do you need to change the kind of work that you do. You don't have to give more money to more charitable organizations. The reality is, God doesn't want you to give anyone anything if you only do it to impress God! God does not love you or find you acceptable because of anything that you do. God loves you and accepts you because you are a part of God. You can now give up any neurotic beliefs and activities associated with perfection. That's right! You can stop trying to be perfect! You can stop trying to do everything perfectly. You can save the time, energy and money you are spending trying to make the world or other people perfect. You can stop trying to figure out how to make yourself greater, grander, more acceptable to God today because you consider yourself to be damaged by the mistakes you made yesterday. Nothing you can do will make you look better, sound better, smell better or in any way be better, more acceptable than the person God made you to be. God has an inner vision. God is looking at you from the inside out. When you are accepting of yourself as a divine creation of God, undeniably connected to God, filled with the love of God, you become acceptable to yourself. That is really all that God is concerned with. Until today, you may have believed that there was something you needed to do to make yourself more acceptable to God. Just for today, examine and explore the aspects of yourself you believe are unacceptable. Identify the behaviors and actions you are engaged in and make a list of those things you choose to eliminate. Just remember that God is happy when you are happy. So do it for yourself. Today I am devoted to eliminating those things about myself and my life that I have determined are unacceptable!" From Until Today! by Iyanla Vanzant http://ow.ly/4Y6VN My lessons learned:
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Gratitude for lessons learned and "old" telephone poles!
Fibromyalgia Awareness Day: Pain Does Not Reduce Potential (Guest)
National Fibromyalgia Awareness Day: May 12th
Potential - Noun: Latent qualities or abilities that may be developed and lead to future success or usefulness.
When I think of my desire to get well, the idea of being “cured” has never been my emphasis. Would it be amazing if one day we are all completely free of fibromyalgia? Absolutely! But in my quest to live better, I have never focused on a cure as my destination. Instead of focusing on a cure – something I cannot control, I have tried to focus on my potential for living better in each moment – something I can control, and on building momentum during the good moments and minimizing the bad. It is a formula that often works, and continues to encourage me to keep trying, even if it means I sometimes fail and fibromyalgia wins.In our frustration with the many debilitating symptoms and lifestyle disruptions of FM, we often look for (and hope for) the quick fix. Who can blame us? But if there is one thing I can share today to encourage and inspire those of you trying to make sense of the misery of FM, it is this – focus on the things you can control, and let go of your attachment to the things you cannot. Be realistic. Understand that you can live better and that you do have a measurable amount of control over your symptoms.
Small changes can really add up to decreased symptoms and a better quality of life.
By being present and focusing on the variables you can control, you are doing the very best for yourself. Minimizing stress, eliminating sugar and gluten, exercising, etc. will not cure you of FM, but they will help reduce your symptoms and increase your quality of life. It is just a fact. A life with chronic illness is still a life full of potential and possibility, but we have a part to play to reach that potential.Frida turned her pain into her passion.
The great Mexican artist and revolutionary Frida Khalo lived her life of chronic illness with passion and vigor – painting many masterpieces along the way. I am no Frida, but I certainly have a lot to live passionately for. Fibromyalgia or not, my life has purpose and I intend to continue focusing on the possibilities rather than the pain. And I know I am not alone. There are many of you who feel the same, so for you, this is just a gentle reminder of your potential.
And for those of you who need a little more encouragement I offer this:
Start small. Change happens slowly. This is an uphill battle we are all facing, but each baby-step takes us closer to where it is we want to be – as long as we have a realistic view of our destination. The path is bumpy, and dusty, and there are many obstacles – and even some booby traps – but with dedication and determination, it is passable.
Celebrate and build on the little victories. Again, this means you must have realistic expectations. Maybe you start walking 5-10 minutes a day. And 4 out of 7 days you do so relatively pain free. Yes! Definitely worthy of a celebration. Sometimes you will not see the results of your efforts immediately, but just know that your efforts are having an effect, and that change is happening. This is why it is so important to stay encouraged, because our bodies give us many reasons to be discouraged. Chose to focus on the potential, not the pain.
Understand that even with improvement, the bad days will still come. This does not mean that all of the good work you have been doing is lost. It does not mean that you should be discouraged and give up. It is simply a fact of a life with chronic illness – one of the facts we cannot change, so slow down, accept the setback, and prepare yourself to move forward again once you are able. Fibromyalgia is not a static condition. It changes and fluctuates constantly. Know that no matter how bad you are feeling in any particular moment, there are better moments ahead. Pain of today does not reduce your potential for tomorrow.
Pain Does Not Reduce Potential
New Video: Christine Miserandino reads ‘The Spoon Theory’
New Video: Christine Miserandino reads ‘The Spoon Theory’
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”.
© Christine Miserandino
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