I found this on a fibromyalgia website, as you see it is 1:30am and I am still awake. This is a typical night for me and I long for the times when I was asleep before 10. I thought I was so old then, and wasting my years sleeping, then I got to where when I tried to sleep, I couldn't, i woudl think of all the things that I could be accomplishing, now, I am awake, but have no energy and the pain is unbearable and yet I still think of the time that I am wasting. What can I do about it?.... Nothing!
Anyway, as I was saying, I found this and of course it reminded myself of me and Mama, as she was recently diagnosed with Fibromyalgia as well. She joked that she got it from me. Thankfully she is feeling great these days, praise the Lord! I hope she continues to feel well. My back is getting better, I think one or two more visits with Dr. Steele shall do it. I am actually able to stand up straight today on my own. I still hurt like crazy though. I just hate not knowing why it hurts, I don't know if I did something or if it's the FM (fibrommyalgia, unfortunately I have been made very aware of the Fibro-fog lately, as I forget everything it seems. I do feel a bit better about it though as now I know I am not crazy and don't have Alzheimers at 27. There is a dog barking in my backyard... we don't have dogs, but whatever they are running out of the yard, I am thankful for that. Now back to the fibro-fog... earlier Robert asked if we had any chocolate, we did, but I couldn't tell him what kind it was for the longest. It was a Twix bar, and when I finally did remember, I wasn't too sure that it was the correct name. We just bought it Friday night, so I should not have forgotten it that soon, but I did. Anyway, welcome to my world! The letter is below, it totally describes me!!!
The 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 some time with me and 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 (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/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, who’s 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 wont see my scars as you would a person who, say, had suffered a car accident. You wont 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. And in many ways my pain may be more destructive because people can’t see it and do not understand....
Please don’t 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 have abandoned me. I have been accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and 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 bought at the store in the pantry, on the shelf, instead of in the refrigerator; 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 and I wake often because of the pain the sheets have on my legs 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.
And just because I can do a thing one day, that doesn’t 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 the 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. And 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 don’t understand….
On a brighter side I want you to know that I still have my sense of humor. 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 grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on 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. And 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 the 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 honored 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, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand….
Thank you for spending your time with me today. I hope we can work through this thing, you and I. Please understand that I am just like you… Please understand….