Today, someone left a comment on my facebook fan page for this blog. They pretty much said that a lot of the time, they just grin and bear it so not to make others in their family feel bad for the pain they're feeling. She asked if any one else does this too. My response to her, was that I think everyone that lives with a chronic pain condition does that sometimes.
Are you guilty of doing that? I know that I am. I know that complaining isn't going to make my pain go away, and I hate to burden those around me by making them feel bad for me or to worry about me. No matter how much I may want to smile though, some days I just can't. The pain, the fatigue, the depression just becomes too much to hide. That's okay too.
Like the saying above, some days I do feel like I'm an actress. I get dressed for the day, brush my hair, look at myself in the mirror and tell myself "Today I won't be weak. I'm going to be strong, and I'm going to smile. The pain will not win today.". I plaster a smile on my face, even if inside I'm literally crying. I pretend that "normal" is my life, when in reality my life is as far from "normal" as it can get. It isn't normal to take almost an hour to unload and reload a dish washer. It isn't normal to not be able to fall asleep sometimes for 48 hours at a time. It isn't normal, to live in constant physical pain every day of your life. It isn't normal to have to fight off depression each and every day. It isn't normal to wake up feeling as tired and unrefreshed as when you fell asleep. It isn't normal to have pain on a daily basis so bad, that you sometimes cry. It isn't normal to have your joints and muscles stiff and achy every morning when you wake up. I could keep going with the "it isn't normal" stuff, but you know what? For me, and for other people who suffer from a chronic pain condition, it is our normal. We've had to learn to accept all of this. We've had to change our perspective of what "normal" means to us.
Sometimes, I feel like I really am just going through the motions of life. It's just what people with a chronic pain condition have to do. We have to adapt to what normal means to us. If more research were to be done on chronic pain conditions, then maybe a concrete treatment plan would be found. One that would allow chronic pain sufferers to change their perspective of normal, but to what society accepts as normal. This will never ever happen, unless there's more funding for research. There will never be more funding for research, unless there's a demand for that funding to be made available. There will never be a demand for funding, if people can't understand. People will never understand, if no one ever stands up and speaks out. I'm willing to do that. I want to do that. I want to educate the world on what it's like to live a life of constant, chronic pain and fatigue. Please consider donating to my "Go Fund Me" account, so I can start educating. So I can start demanding, that progress in research be made for people like us. We deserve to be able to smile on the outside, without silently crying on the inside. We deserve to be able to go on family outings with our family, instead of staying home alone because the pain is too bad. We deserve to be able to clean our homes, and make a meal for our family, without it bringing us to tears. We deserve a normal life.
I have 2 dummies in my life...they forget everyday that I have issues LOL I hope they never find out I said this...but OMG!!!
ReplyDeleteIt's been 12 freekin years, HeLLo anybody home, apparently not.
I enjoy reading your blog...I wish you much success in getting the funds and resources that you need. I know that education is the key....all of our stories seem to be all so similiar...I agree with us deserving normal although I am no longer sure what that is it has been so long....May not recognize it if it slapped me in the face......check out my blog at www.simpleexpression11.blogspot.com.....
ReplyDeleteThere are so many people in my life that have no idea what so ever what kind of pain I deal with and I know that I have no idea what kind of pain that you deal with because my fibro is not as advanced as yours is. So many people don't have a clue and think the same way that I did when I was first diagnosed that it is a catch-all diagnosis. I sometimes think that those closest to me forget what I deal with daily because I grin and bear it until I get to the point where I just have to sit down and cry.
ReplyDeleteI don't think that there is any normalcy with someone that has chronic widespread pain. When folding a load of towels right out of the dryer can bring you to tears or unloading a load of dishes out of the dishwasher makes you want to grab the pain pills, a pillow, blanket and go to bed, there can be no normalcy. Those that don't suffer just don't understand, that's for sure.
I agree with all of you. I'm so sad that we don't have the opportunity to live a normal life. I really hope that I can help make a little bit of difference in this fight, by educating the public on what our lives are like. I just wish I was rich, or would hit the lottery, or that my husband wouldn't have walked on me, or....something. =/
ReplyDelete*walked OUT lol
ReplyDelete