by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate
How many times do you feel guilty when you watch your family do jobs which you used to do without thinking about it? What is your reaction to that barbed comment, “No, you sit still. You said you don’t feel well!”
Yes me too – I want so much to do what I have always done but these days I am forced to look at the jobs and think maybe tomorrow I will feel better. In fact (tomorrow) Mother Mañana has become my middle name
I read an article about one fibromites who made the front page of her local newspaper because she told them she was dying to do her own washing up? Certainly a good angle for a story and it raised quite a bit of awareness, but that nevertheless does not stop you feeling isolated with your invisible disability.
Come to think of it, this could be a wonderful story for the local paper for International Fibromyalgia Awareness Day on May 12. Just imagine if all the local newspapers carried the story and talked about raising awareness, it is such a silly story we would even make television.
But I do try to look on the bright side of any situation and must admit I have met such pointed remarks with the comment, “Well, you know I had to drop out of the London Marathon and was very disappointed I could not do the skydive.” This usually brings a smile and clears the air. It helps if no offence was intended.
But recently someone sent me a copy of a letter written by Ronald J. Waller on behalf of his wife, for the website, www.fibrohugs.com, where it has been viewed almost 29,000 times.
It is a poignant letter that supports the need for understanding for fibromites and leaves the reader in no doubt that the writer is certainly suffering and under pressure.
The composer of this letter is Ronald J. Waller, who is a published writer and has his own website http://rjswritingloft.com.
He told me, “After watching my best friend, my wife, suffer from fibromyalgia I felt compelled to write, inform and continue to learn more about this demon that not only invades Carolyn’s life but also has affected all who are close to her.”
My thanks to Ronald for sharing this with us and thanks to Fibrohugs for allowing us to publish this.
LETTER TO NORMALS
Hello Family, friends and anyone wishing to know me,
Allow me to begin by thanking you for taking the time out of your day to spend time with me and to get to know me better. A person’s time is their most valuable asset and yours is appreciated.
I want to talk to you about Fibromyalgia Syndrome (FMS) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are mis-informed. Because of this judgements are made that may be incorrect…….So I ask you to keep an open mind as I try to explain who I am and how FMS/MPS has assaulted not only my life but those whom I love as well.
You see, I suffer from a disease that you cannot see – a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, whose attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I. You will not see my scars as you would a person who had suffered a car crash. You will not see my pain in the way you would a person undergoing chemo for cancer. However, my pain is just as real and just as debilitating. In many ways my pain may be more destructive because people cannot see it and do not understand……..Please do not get angry at my seemingly lack of interest in doing things. I punish myself enough I assure you. My tears are shed many times when no-one is around. My embarrassment is covered by a joke or laughter, but inside I want to die……..
Most of my ‘friends’ are gone, even members of my own family do not understand. I have been accused of ‘playing games’ for sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute. This is because the burning and pain in my legs or arms or both is so intense I cannot put my clothes on. I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.
I feel like a child at times……just the other day I put the sour cream I had bought in the pantry instead of in the fridge. By the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to ‘lose’ the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the demon assaults me at every turn.. Please try to understand…………
Sleep, when I do get some, is restless. I wake often because the pain of the sheets on my legs is unbearable or because I twitch uncontrollably. I walk through many of my days in a daze with the fibro-fog laughing at me as I stumble and grasp for clarity.
Just because I can do a thing one day, that does not mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening. The next day or even in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. There are those who say ’but you did that yesterday!’ ’What is your problem today?’ The hurt I experience at those words scars me so deeply that I have let my family down again, and still they do not understand……………..
On the brighter side I want you to know that I still have my sense of humour. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandkids and shine when they give me a hug or ask me to fix their favourite toy. I am fun to be with if you will spend time with me in my own playing field. Is this too much to ask? I love you and want nothing more than to be a part of your life. I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do research for your latest project. Many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honoured I am to have you in my life.
So you see, you and I are not that much different. I too have hopes, dreams, goals…..and this demon….Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that. I will be there in ways that I can. I will give all I can as I can. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatment, at least right now anyway…….Please understand……..
Thank you for spending your time with me today. I hope we can work through this thing, you and I…..I just need you to just try to understand that I am just like you……………………
For a small insight into the constant pain of a fibromyalgic lift your arm and squeeze the muscle just below your neck on the top of your shoulder, hard enough until it is uncomfortable. Then squeeze a little more and hold it for a few minutes if you can stand it. That is the pain we feel from the roots of our hair to the tips of our toes……………………..
Thank you for taking the time to read this, sorry if the pain experiment hurt’s, it does!! xxxxxxxx
Copyright of Ronald J. Waller and www.fibrohugs.com