FIBROMYALGIA
After reading an article posted by a newspaper writer about the suffering of F.M. patients AND their families I was prompted to write this reply.....
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In My Opinion... I would like to add my perspective on Fibromyalgia, as was previously discussed in Mr. C***'s articled entitled 'Living with a Nightmare'. Fibromyalgia or 'FM' is what is referred to as an 'Auto-Immune disease'. This means one has an over active immune system which attacks it's own body. A body fighting and destroying itself such as with other Auto-Immune diseases such as Lupis and Rheumatoid Arthritis. I agree, it is a nightmare though I will say that I feel as though it does not have to become such for the families of the sufferers, at least not for the most part of that person's life. FM is about what a person has and no longer has. We lose such things such as sound sleep and the ability to really relax to loss of our 'fine' sense of touch. We gain pain, discomfort and exhaustion for which there is no real relief, no cure. I want to make a few simple points. First, to those who, like me suffer with FM. I think our perspective on this problem is the primary source of relief and our suffering. I think that pain can be dealt with in one of three ways. We can give into the pain and suffer. We can fight the pain and lose to exhaustion, or we can accept that which we cannot change, our condition, and that we should not give in to, the pain. Like many other sorts of pain we must consider whether our feelings toward it will cause any change for the better or worse. Does it help to whine and moan? Any woman who has gone through 'natural' childbirth knows that fighting pain only makes it worse. If we decide that we cannot stop the pain and there is no relief then we can look at it as a simple fact of our lives. I think that if we look at our lives as being FILLED with pain then what else do we have room for? Life may be tough but at least we do have a life to live. It is up to us how we choose to LIVE that life. As for the ones we live and interact with I want to say these few things. The biggest point I must make is that the belief that those who suffer pain chronically (all the time) get used to it is WRONG! WE hurt as much the thousandth day we are in pain as we did the first. When you see us active please realize it is often as much of an effort for us to get up in the morning and get dressed as it would be for a normal person to really exert his or herself doing strenuous exercise. Don't assume things are easy when you see us working at something and wonder why on another day we cannot perform with the same vigor. When you see us push ourselves to go on that is NOT an invitation to push us harder. We may choose to keep going at something instead of sitting down for no reason other than a fear that we may NOT be able to get back up! My life is my family. I WILL do whatever it takes to meet my responsibilities no matter what. I do so not out of guilt or debt but because I love my family and will be there for my kids, ALWAYS. My husband is a wonderful man who knows that IF I can I will, if NOT, I will still try to do what needs to be done for us. I know he is always there for me if I need to ask for help. My greatest personal joy is my involvement with the wonderful children of the local elementary school. (Lots of you moms and dads have plenty to be proud of!). Some days my legs hurt too much to stand on, my hands are on fire with pain and a migraine feels as though it is tearing my mind apart. Most days I walk in the school with my kids even if I have not scheduled myself some sort of 'work' on that day. Some days a child I have met while volunteering will run up to tell me of an achievement, a goal they have reached or just a happy story to relate. At those moments I can feel the warmth of their pride and joy like a ray of sunshine on a day that started out so very cold and bleak. I could have sat in the van and waved at my kids, I could have gone home to lie down on the couch. I could have spent the day drowning in my pain... I would be the loser in this battle then. Instead, I get up every morning, get dressed and go about those things that need to be done, those things that may help others. Not big stuff, but small things but at least it is SOMETHING. I do this because it is a good thing, the RIGHT thing to do and I am filled with a sense of happiness and satisfaction that helps push aside the awareness of my pain far better than any pain reliever I might take. My pain is always with me like a dark cloak I MUST wear but I do not choose to pull it over my eyes and let it be all I see. I CHOOSE to see all that is wonderful around me NOT just the burden of FM. FM sufferers may feel as though they live in a bad dream at times but there is no need to drag those we love into that. We do desperately need for them to understand what we can and cannot do, and accept that. If you see us looking down, give us a reason to look up. If you see us dead on our feet, offer us a chair. Many of us will rarely sit down on our own but are forever grateful for those who give us a chair to sit on or a shoulder to lean on without being asked. As for patients sense of doom I will tell you this: I was diagnosed almost 12 years ago with FM. I was told that within three years I would need to choose a comfortable chair to spend the rest of my days in. I do not know if my energy will carry me forth another 10 years, another year or even 6 more months but I tell you what I DO know. I am not out shopping for that chair just yet! Just MY opinion......
