This is soooo me Hello Family, Friends, and Anyone Wishing to Know Me! I want to talk to you about fibromyaliga, many have never heard of this condition 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 fibromyaliga has assaulted not only my life but those whom I love as well. Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain. 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 cut that had to have stiches. You won’t see my pain in the way you would a person with a broken leg. 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.... You must see with your heart, what your eyes cannot see. You must listen with your ears carefully to what I am telling you. What I describe to you may not make much sense to you and may be difficult for you to understand. Sometimes it may seem to you that Im in a different universe. You dont have to fully understand my universe. However see my pain, and listen for red flags of any danger signals where you may need to help with added assistance. I like to call it sending in the troops. Anytime I do not seem in touch with reality. 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. You will hear many things from me that to you seem as easily resolvable. You may wonder why I make the same wrong decisions over and over again. Why havent I learned by this time? Why cant I see the senselessness of my behavior? I may seem to be getting my life together and them bottom out all over again. Please understand the difference between happy and healthy. When youve got the flu you probably feel miserable with it, but Ive been sick for years. I cant be miserable all the time, in fact I work hard at not being miserable. So if youre talking to me and I sound happy, it means Im happy, and thats all. I may be tired. I may be in pain. I may be sicker than ever. Please, dont say, Oh, youre sounding better! I am not sounding better, I am sounding happy. Or youre looking better today, when actually I am in unbearable pain on the inside. What is happening here? Am I lazy, stupid, etc? Nope. My physical brain and body is very different than yours. I experience life different than the way you do. I feel different than you do. 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 of the burning and pain in my legs or arms and shoulders. The pain can be so intense that 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. Do I experience mood swings? If I am hurting I may be angry, sad, depressed, or any of the hundred moods in the world. I’ll never know what mood I will wake up with? I may treat you cruelly and say horrible things to you; I may ignore you completely, or cry on your shoulder unstopping when I’m in a Fibro Flair. You may wonder what you said or did that made me this way. Well you did nothing it’s the Fibromyalgia and all its underlining factors causing this. While the most predominant symptoms of fibromyalgia include widespread pain and persistent fatigue, the resulting cognitive impairment of this condition may be its most maddening. Commonly referred to as fibro fog, this symptom is a conglomeration of cognitive challenges. Fibro fog is understood to be a physical symptom of fibromyalgia, not a psychological one. Just as no two individuals experience fibromyalgia in the same way, fibro fog also has a varying range of indications, including: Mental confusion, Fuzzy thinking, Short-term memory loss, Inability to concentrate or pay attention, and Language lapses This is why I feel like a child at times. Just the other day I put the egg’s I bought at the store in the pantry, on the shelf, instead of in the refrigerator. 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 keys, only to find them in the freezer. As I try to maintain my dignity the Demon assaults me at every turn. I have a physical illness and it isnt my fault and I didnt ask for it I dont want it and I don’t deserve it. I try my best to sleep, but when I do sleep, it 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. 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. 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 and friends 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 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 want nothing more than to be a part of your life. I have found that I can be a strong friend in many ways. 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. All I ask is that you become educated about fibromyalgia. I am someone in your life that suffers from fibromyalgia. You may think you know everything there is to know about it, but there is more information out there than you think. It is more complicated then you think, and it is more life changing then you think. Lend a helping hand. If you want to be helpful to someone with fibromyalgia, just ask what you can do. Be flexible with invitations and plans that you have made. Understand that sometimes the pain of fibromyalgia is overwhelming. Be active you say, how can I be active when I cant even get out of bed for the pain. You say exercise is good for you, how can that be when I cant even walk for the pain. Accompany me to a doctor’s appointment and take an active interest in my treatment. You can take notes for me at the doctor’s office and then we can review them together at home. Dont take things personally, when I suffer from sudden mood changes. These mood swings are part of the syndrome. 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 that 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. I cannot show you a open wound, to show how much pain I’m in. Or If I had a broken leg, you would tell me to sit right down, get me a pillow, offer me something to eat or drink and have that concerned and understanding look on your face. So allow me thank 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 hope we can work through this thing, you and me. Please know that I am just like you, and I just need you to understand. UnlikeUnlike · You and 11 others like this.. Lorraine Saccone Smith Lov
Posted on: Sat, 20 Sep 2014 05:22:20 +0000