I was comfortable, in my surroundings. But they did not serve me. Too much needed to be changed. I am searching for it. I may be a bit uncertain, but the only constant in this life is change.
I was comfortable, in my surroundings. But they did not serve me. Too much needed to be changed. I am searching for it. I may be a bit uncertain, but the only constant in this life is change.
Having one of those days … looking into a mirror. Yep, she’s there, looking back at me. “You are NOT my friend.” I remember to say “today” under my breath because I’m trying to ‘turn my frown upside down’. Why does that saying plague me? It is like an annoying mosquito, you can hear it but you can’t see it.
What do you do when you are having a not so friendly day with yourself? There are the ‘mild annoyances with oneself’ days, and the ‘I better not see you at all’ days. I’m going to ask you to be honest and open. Let people around you know, “This is not a good day for me, but I will get over it”. “Why?” “Because that is just the way it is some days.” You can play out the rest in your head … even prepare for it;
“Well, aren’t you selfish?” “Wish I had that much time to think about myself.” And the most endearing, “Get over it.”
Well, I could tell you what my mouth so desperately wants to say in response, but I’ll cool off and speak from the heart. My stock answer, “it is what it is.” I choose not to engage! I have enough going on with not liking myself (today). I choose to do something about that, as for the insults, you can go … get yourself a hobby!
Today I will choose to be nice to myself, even though I want to kick and scream and throw a tantrum. I also want to cut off all my hair, myself. Yes, it’s one of those days. I need to focus on what I like about myself. Since I’ve decided to be kind to the world and not run errands today, I will take out my journals.
Journals can be used for a vast array of things. I found one I liked, in particular, to just mess around with, Art, Doodle, Love, and I found one to write inspirations and aspirations in, my green journal (very original name). Then I just found an awesome tablet divided into three sections, my funky journal (again, a name of my own choosing, in case you were wondering). The funky journal has a section of lined paper, graph paper, and plain paper. I love my journals.
What kind of journals do you have? Would you like to start one? Is it already a habit for you? I finished Art, Doodle, Love but refer back to it on those days. I keep the green journal for the ‘I want to cut my hair off’ days. But all three get me through the ‘that person in the mirror is not my friend’ days. I am not crafty by any means. But it is helpful to review your scribbles and musings when you are in a bad mood. I have a good old stack of 99 cent tablets that I scribble in and write nasty notes in, they get thrown out as soon as they are filled up, no need to continue to travel down that path…
So, on those days, make sure it is just a regular old ‘you are not my friend’ day and it is not depression. If it is depression, this is a disorder, an illness that often walks hand in hand with chronic illness. You must be treated for it. Once you’ve established what type of day you are having to grab the appropriate journal, book, DVD, photo album, whatever it takes to turn your day around and make it bearable. Because I can promise, tomorrow will be better!
The answer may surprise you… Doctors are often afraid of chronic illness. How do you treat someone when their symptoms change daily, even hourly? Who is supposed to have the answers? Doctors. Do they? No, not for chronic illness. This is frustrating for them! They are incapable of curing fibromyalgia and this is upsetting; to them, to us, to our families … what are doctors to do with a person who is chronically ill?
The fear usually boils down to the medication prescribing. What is appropriate for chronic pain varies from patient to patient. Can they ‘justify’ what they prescribe? Should they refuse to prescribe and send you to a pain clinic? Should they track down alternative therapies for you? Should they have you enrolled in physical therapy? Send you to a psychiatrist? Often, it’s a toss of a coin to make a decision what the best treatment for their patient will be.
Have you ever seen a frightened doctor? No? I bet you have. Have you ever seen a frustrated or an angry doctor? Then you have seen a frightened doctor! Often, it is not that a doctor doesn’t want to treat you, they do, they want to fix you! The truth is they do not know how. It frustrates them, scares them a little, sometimes a lot!
What do you know about your chronic condition? In the beginning, not much, none of us do. Educate yourselves! Take notes! Bring in the information you want your doctor to read! They will appreciate it. Better yet, mail them information … then they can be prepared for your visit. Don’t be afraid to say, “I want to discuss this with you on my next office visit which is on Tuesday the 15th of June.” Or let them know you just came across an article about your condition and you’d like their opinion. Doctors are willing to learn! However, if your doctor rejects the information, find a new doctor.
The Shadow Boxers
Your Personal Journal
What is a Shadow Boxer? A person who fights an invisible illness. A person who overcomes what tries to bring them down. A fighter. We are all Shadow Boxers. We all have had to fight through insurmountable odds at one time or another. Every day people have a personal conflict to fight through. For some it is just a part of the human condition, for others it may be a chronic illness. Everyone has a story they have never told … I just happened to write about how to shadow box a chronic illness. The Shadow Boxers, Fighting Fibromyalgia, Your Personal Journal written by Karen Anderson and I, is being edited for print as I type this…
The cover of our book has taken many, MANY hours of thought, editing, adjustments, and caused confusion, even conflict at times. Silly, really. A cover of a book. Does it really hold that much importance? Yes. It is important. I will share with you what the cover means to me.
In Norse Mythology it was said that the god of war and wisdom, Odin himself, had two ravens, one on each shoulder. They symbolize thought and memory, sight and sound. At times, thought and memory can be fleeting for a person with fibromyalgia battling fibro fog. Sounds can be overpowering, eyesight can be affected. The ravens were also looked to as a sign for the outcome of a battle! If the ravens were active, the battle would be won, if not, the battle would be lost. We never know from day-to-day, even hour to hour if we will win our battle. The woman in the picture is representative of Freya, the Norse goddess of war, ready for battle. We all have the spirit of Freya in our souls, we may get knocked down but we get back up. We look to the ravens to be active, and victory for the day will be ours!
Can you guess I am Norwegian? I do love mythology! All kinds, but I must express my sincere delight when reading about the Norse mythology … I love that the women were great fighters, as skillful as the men. Vikings, explorers, ready for battle; men and women.
So the journal will be printed and sold on Amazon. I will, of course, post the date it is available for sale as soon as I know. I hope you have enjoyed exploring the cover with me! The contents will lead you in battle, presenting you the necessary skills you choose to acquire to live you best life with fibromyalgia!
(For further content information go to I Could Write a Book… on I Tripped Over a Stone.)
You have just been diagnosed with Fibromyalgia Syndrome. What do you do first? Go to the library, go to the bookstore, go to Amazon, get yourself armed with some books written by individuals WITH Fibromyalgia. Learn about what it is that you have. You can join support groups but until you can define fibromyalgia, fibro flare, and fibro fog, you may as well join a group in Latin.
Just a caution flag about the internet. It can be a wonderful resource! But until you develop your own personal knowledge about fibromyalgia, you will have a hard time deciphering what sources are credible and what sources are not. I do wholeheartedly believe in support groups; on-line and in person, just know your basic information first.
I encourage you to get the book Fibromyalgia and Chronic Myofascial Pain, A Survival Manual by Devin Starlanyl and Mary Ellen Copeland. Get it delivered to you via Amazon and make that a rush delivery! The book will be your life long companion. It is more of a textbook, go to the chapters that speak to you first. (Go to the ‘new and used’ option on Amazon and purchase a used copy in good condition.) I purchased my first edition in 2001 and it literally fell apart from use, I purchased a replacement about 5 years ago. This is a must have survival manual. It is my Fibro Bible! I still use the information in this book today.
Learn your definitions! In the early stages of Fibromyalgia, you will need to know how to explain what you have to those around you who are attempting to support you. It is imperative that you can define fibromyalgia with a simple, clear definition, as well as fibro flare and fibro fog. Since fibromyalgia is a syndrome, this means it is made up of many symptoms. You will have MANY varying symptoms but learn the basics first … learn simple definitions so you may help others understand. You will need their support. When questioned about more detail, it is OK to say, “I do not know, I am still learning.”
Learn these definitions, better yet, write them down and use your own words! Learn what fibromyalgia, fibro flare and fibro fog mean to you! This is just the tip of the iceberg. But it is a place to start.
You got this!
Have you forgiven yourself? Stop. Think about it… have you forgiven yourself? This is a chronic disease that was given to you. You did nothing to deserve this. I ask again, have you forgiven yourself?
Not being at your child’s school play or sporting event, not attending all the parties and family gatherings you said you were going to, not having a spotless home, or even a fresh shower every morning. What about not being a partner to your mate, not being able to meet all of their needs the way you used to? Do these things make you feel guilty? Worthless? Ashamed?
This is fibromyalgia shaming you, making YOU feel guilty and making YOU feel worthless! This is not who YOU are. The messages you are receiving about your “alleged” incompetence … the disease is the one talking. The things you did when you were able-bodied are the things that were taken FROM you. Taken! Get back up and figure out a new way of doing things.
You are still present in your life! You are present in your child’s life and your partner’s life. You are a walking, talking, real human being with a heart and soul! Did you think your family would not love you anymore? Or is it … that they shouldn’t? Is that what the disease is telling you? Disease is a deceptive liar.
This is the first step you will take in the process of leading a life filled with purpose. Forgiving yourself leads to acceptance. Acceptance means you can begin to lead your life in a positive and alternative way, while dealing with your fibromyalgia. You will figure out how to partake in activities again, differently but with purpose. You will figure out how to do this but first you must forgive yourself so you can get to the task at hand.
When you deal with fibromyalgia, a big amount of frustration stems from the lack of energy available for you to complete things in your normal everyday life. The simple daily tasks that you took for granted now seem daunting and drain you of energy. Showering, cleaning, grocery shopping, doing laundry, attending a get-together with friends. You have a very limited supply of energy when you have fibromyalgia. So, you learn to choose wisely and pick a few items to complete. Leave the rest for another day.
The spoon theory … every activity takes a certain amount of spoons. Healthy people have an unlimited amount of spoons. Those with fibromyalgia have a limited supply. Every activity takes a certain amount of spoons and when they are gone, you are done for the day! Energy is the number of spoons you use for an activity in this theory.
The bank account theory …. you have a checking account and you spend accordingly. You know what you have put in your bank account and what you will be able to spend for the week. Now let us say Fibromyalgia is your bank. Every morning when you wake, no matter how much money you put in your bank account the night before, the Fibromyalgia Bank arbitrarily resets your balance. You check your account and that is all the money you will have for the day. You have to figure out how to spend according to what your balance is. Energy equals your bank account balance in this theory.
The gas tank theory … you fill up your gas tank to full every night. When you wake up, your tank may read full, half empty or maybe you only have a quarter of a tank. It doesn’t matter that you filled your tank for the new day, fibromyalgia is the new day and it will tell you how much gas you have in your tank. Energy is the equivalent to the amount of gas you have in your tank.
You pick your own theory…I really like them all. There are many more! The three I mentioned are my favorites to use when I try to explain to someone what it feels like to have fibromyalgia. Between those theories and feeling like you have the flu, all day everyday, I can usually get my point across. The bottom line is you have a limited amount of energy with a chronic illness. There are days when you just don’t have any spoons, money, or gas left in your tank. Those who do not have a chronic illness do not have a limited amount of energy. They can wash some more spoons, deposit some extra cash into their bank account, or head to the gas station for a fill.
Replenishment works for the non-chronically ill. Why can’t the chronically ill do the same? Why can’t we replenish our energy when it is exhausted. In fact we must be extremely careful to not reach “empty.” Once our energy is depleted so is our ability to manage our fibromyalgia. We may go into a fibro fog or have a fibro flare that can last days or even weeks. Hitting empty for a person with fibromyalgia means we were not able to plan accordingly. This is a daily task we must accomplish, preserving our precious energy at all times. We plan our days, attempt to accomplish our well thought out goals, and stop all activities when we hit empty.
I am writing a book! It began as a labor of love in October of 2016. Then, well, labor … The time that it takes to write and re-write, edit, format, design a book jacket, pick a platform you want to publish your book with, and re-do the whole process two or three more times to ensure its “good” enough! Oh my! I could go on and on. Do I think it will be a best seller? No, but a girl can dream. Do I think it will be an asset for individuals with fibromyalgia? Yes! There is no question in my mind. You may ask, “What possessed you to write a book about fibromyalgia?” My answer, “The lack of positive information available for those of us actually trying to figure out how to live with fibromyalgia.”
I am writing this book with Karen Anderson, a friend of mine. Together, we have been living with fibromyalgia for over 50 years. I have consumed books written by doctors, nutritionists, physical therapists, functional medical practitioners, and even a few books by individuals claiming they were “cured”! What has all this reading done for me? I can find the doctors, eat the diets, take the pills, go to distinct therapy programs, and reiterate my entire life to a functional medicine practitioner! But I am still stumped by the “cured.” This is a central nervous system disorder, there is no ‘cure’.
I want to learn how to live a full, positive and purposeful life with this disease!
How do we LIVE with fibromyalgia? Really live? I want a book that helps me set up a plan that works for me. I don’t need to know how Suzy Q. down the street manages her fibromyalgia. She is not me. I want to know how to live my life, purposefully and with joy! Fibromyalgia is not going anywhere. It is a life sentence. Well, I want that life sentence to be a positive one. Again, I ask, how do I live with my fibromyalgia?
So, Karen Anderson and I set out to provide some ideas and insights so our readers could decide what works for them and what doesn’t. We wrote a book that defines numerous choices you can make to learn how to live your best life with fibromyalgia. We’ve researched and written down some concepts, but the rest is up to you! This is your personal journey with fibromyalgia.
I guess I’ve learned, no one can tell me how to ‘handle’ this disease. I have to be my own specialist. I have to do what works for me. There were many years (and tears) of trial and error. There will be for each and every one of us with Fibromyalgia. There comes a point when one more visit to a specialist is too much, one more supplement or pill is too much. There comes a time when you want to put into practice what you’ve learned and just live! We must always seek knowledge, but learning to live your best life with fibromyalgia is the point to the book I am co-authoring with Karen. I can’t tell you what works for you, only you know! You have the power to decide!
This book will be in an interactive journal format and will prompt you to make your own plan, write down your own ideas, and figure out what your life will look like! I will be releasing the name of the Title very soon. The book will be ready for purchase by July of this year. I will let you know where you can make a purchase of this book if it sounds like something that may be helpful to you. This is for us, Fibro Warriors, and to a life well lived!
I heard a veteran speak about his experience in service. He said the most dangerous weapon we have in our military arsenol is a pissed off, 19 year old marine, with a gun. How true I thought. How very true.
We have many who serve in the military and are ready to give up their lives for our country. I met many of these young men and women while my brother was hospitalized at the Brooke Army Medical Center in San Antonio, Texas. It was always the same statement, “I was ready to die for my country, I was not ready to be injured and returned home disabled, leaving behind my unit.”
What about these young men and women who fought for us? What are we willing to do for these injured soldiers? Not enough.
Twenty two service men and women are killed daily by suicide. The site http://22kill.com is addressing this issue and bringing this truth to the public. It is time to stop this senseless loss of our nation’s soldiers. These men and women served us! Is it too much to ask that we now provide service to them? We are losing our veterans. We are losing our brothers and sisters, sons and daughters, mothers and fathers. Twenty two a day are killed by suicide.
This Memorial Day is to honor the fallen. This is a time to remember we have men and women who are constantly fighting to provide security for our nation. These soldier fight to ensure all U.S. citizens have the freedom to pursue their inalienable liberties provided to us under the United States of America’s Constitution.
I say thank you for protecting me. Thank you for protecting my civil liberties. The loss you feel this Memorial Day will not be overlooked, I honor you.
I encourage you to find your higher power. Whoever that may be. Give up your “stuff”! Begin in a better head space. Make it a new place, practice purpose, and live with joy!