Just a girl blogging about her life with a chronic illness
Thursday, August 23, 2012
I can be happy.
Some of you might be wondering what Fibromyalgia is, or what its like to have it. First off, it is different for everyone, some of the things that I feel might not be the same as what my mom feels, or someone else with fibro. People with Fibro have more Substance P in there brains then "normal people" causing them to have a greater sensitivity (perception) of pain. So basically the little pain dial in my brain got turned up way to high. So any little thing that happens to any muscle or joint or anything in my body causes me pain. Just sitting on the couch, I will be hurting somewhere. To top things off, I have hyper mobility in my joints, which means they bend farther then they are supposed too. Making it easier to injure them, and making my Fibro worse. Plus the fatigue. My fatigue is not just being tired. Most days I am in an extreme state of exhaustion. Imagine having to carry some random fat man on your back all day everyday, You can barely move. Every little movement takes so much energy. Also, most people with Fibro have whats called The Alpha Delta abnormality. Which basically means when they are asleep there brain is still awake, making them wake up not feeling refreshed. Most also have Insomnia, and when people don't get sleep they feel achy and stiff, adding to the normal joint and muscle pain. Its all one big cycle, you see? Then to top it all off, we have a messed up memory. Something went wrong with that part of my brain, it doesn't work to well. My brain is overly distracted and unable to focus. Making my short term memory almost non existent, and my long term memory quite bad. This can get VERY FRUSTRATING. Imagine not being able to remember something someone just told you a couple minutes ago! You would get upset, wouldn't you?? So basically having Fibromyalgia is like having a bad case of the flu, but 24/7 for the rest of your life. And I haven't even listed all the symptoms. After all this, the person with Fibromyalgia most likely suffers from depression. Like come on. You basically had EVERYTHING taken away from you. Your health, your memory, your freedom, and worst of all, your friends and family. I sit in my room all alone, knowing that they don't understand! They never will! Some don't even believe I am are sick, they don't see the PAIN I am in 24/7, how can they when I hide it so well? When you see me, you don't see my pain, my suffering, all because I smile. My smile doesn't mean I'm not hurting, it means I am happy. Please know the difference between "happy" and "healthy". Fibromyalgia is a chronic illness, its not going to go away. I will never be "healthy." But that sure as heck doesn't mean I cant be happy. So when I am smiling and look "happy", please don't say I look "better" or "healthy" or say I "don't look sick." That will surely make me VERY mad. I cant spend all my days being sad and feeling sorry for myself. When you get the flu, you can easily put everything on hold for a week to get better. You can feel sorry for yourself, and complain and people will care. But with Fibro I just CANT put everything on hold to get better, because I am NOT going to get better. After the first month of being sick people get tired of it, they start to get annoyed if I keep complaining. They don't want to hear about my problems, or the pain in my knees. So I keep it to myself. I don't complain. I pray. I just pray.
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3 comments:
How'd my little girl get so wise?
Please know the difference between "happy" and "healthy". Fibromyalgia is a chronic illness, its not going to go away. I will never be "healthy." But that sure as heck doesn't mean I cant be happy.
* I love these lines!! Yes! *
I remember,Ellee, after I got my own diagnosis, that everyone who knew would ask me "how are you feeling today?" In a way that was asking, 'how does your back feel today?' These family members did not ask anyone else that question? But they started conversations with me that way.
This is why I wrote that goal on my white board. 'do not let my AS define me.'
You keep on defining who Ellee is. You make everyone forget that you may not always be 100% healthy.
I will keep on reading these posts with a special interest!
Eric
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