Wednesday, August 28, 2013
MY FIBROMYALGIA (FIBRO) SOAPBOX
My Fibromyalgia (Fibro) Soapbox
I saw this on Pinterest and to me it said something other than what I think it was meant to say. This is exactly how I feel about fibro, I never know if it is killing me or making me stronger. I do know that I live with it everyday and no one that has never experienced fibro will ever understand what it is like to have fibro. Oh yes, occasionally I run into someone and they get it. I met a lady recently at physical therapy and she said, "I don't have fibro, so I don't feel the way you do. I don't experience pain the way you do because I am not as sensitive to pain as you are". I almost passed out because even though she does not have fibro, she gets it. That's right, she gets it......
This is a very rare thing to happen most people including Doctors, don't get it. They can never know how I experience pain and to what degree I experience pain. I have found over the years that most Doctors just kind of listen to you and pretty much blow you off. You can try to explain your pain and your struggle to be better but they can be very dismissive. I know and I have know that there are some folks that say things like well you should exercise more, work harder, pick yourself up, eat better foods, your lazy, nonproductive and IT'S YOUR FAULT you are sick.....
Well I am here to tell you, IT IS NOT MY FAULT that I am sick, I have Fibromyalgia. Let me say this again, I have Fibromyalgia and again, I have FIBROMYALGIA. I have been saying this for 16 years and I am still saying it and I still struggling and I still need answers. I don't need or want to be dismissed and treated as something other than what I am, a human being that is sick. I need understanding, care and help because my body is sick.
I am and have always been a very hard working, intelligent and capable person. I know when my body is telling me something. I can hear my Fibro loud and clear. I always tell people it is like my body at hums at about a 2 or 3 level pain and then it starts screaming at me at a 7, 8. 9. It never quite gets to 10 and I would only give this level to childbirth but still my body screams. I fight every second, every minute of everyday to be the best person I can be. I fight to struggle through the hard things and the things I need to do. Then occasionally, I have a good day. Think about that for one moment, occasionally I have a good day. What if you had to say, "occasionally I have a good day".
It isn't just the pain, it is the exhaustion. Before my Fibromyagia and Pernicious Anemia, I thought I knew what exhaustion was, I had no idea. Now I know, when you can not even sit up in a chair to eat from a plate, that is exhaustion at it's ugliest. So I live with severe pain, discomfort and exhaustion. Imagine a life like that, everyday and always. Then add to that health care workers that either can't or won't help you, that dismiss you. Then the things people say to you and the fact that everyone keeps looking at you, as if you did something to cause this terrible thing to happen to yourself.
Every time I describe my pain and my struggle to someone I get, "but you look great"..... But I look great, sorry but looking great doesn't tell the story of what goes on inside my body. My body is sick and it has been sick for a very long time. This isn't because I am getting older, or because I don't exercise (by the way, I do exercise) nor is it my fault. This is something that happened to me and I am sick and I hope one day someone will actually be able to help me.
For all of us that live in constant pain, help us find a cure.....
Living With Fibromyalgia....
End of Fibromyalgia Soapbox
Gentle Hugs To All My
for we are
Fibro Warriors and Survivors