When it's late at night, and the pain is raging - I sit rocking away in my chair surfing the internet, looking for hope. Too often though, I'm finding research and news that only frightens me, confirms my fears and worries me to my core. I wish I was one of the lucky ones. That this stupid disease was caught in time to beat back. I read about suicide rates, and how if those don't get you - the heart attacks and strokes and aneurysms will. It makes sense. When I'm in pain I feel my heart rate start to go up, I feel my blood start to pound - I feel the shift in my body and while I know that it's happening and I know that it's ramping up, I also know that I can only control it to a point. I try to stay as comfortable as possible. I try to relax, I try to image the pain like a wave and ride it to shore rather than fight it in the ocean. But all the imagery and coping mechanisms aside, I'm also well aware that this is doing irreparable damage to my heart. I know that it's not good. I can tell based on my pain what my blood pressure reading is going to be at the doctors office usually. If it's a low pain day- I have a great reading - but as soon as the pain starts creeping up - so do my readings.
I am ashamed to say that with my extended pain and sleepless nights my tendencies to want to lash out and swat at people rise as well. If you take a swipe at me, I'm going to go guns blazing at you. If you hurt me, even in the past - well, I'm hurting now and I'll hurt you now thanks so much. I do not like that side of me that RSD brings about. I do not like being a spiteful person. I don't want to be angry. I'm generally a happy person and someone that can turn the other cheek or just brush things off. But something just builds up - and then after so much unrelenting pain - it's like it bubbles and there is a pressure valve and I can not stop it. And while for a brief moment I might feel better - ultimately I do not feel better. I feel like I let myself down. I am better than petty swipes. Stupid gossip. That is not me. That is me giving into the ugliness of this pain, this monster that I'm fighting.
So, I sit and I rock and I worry. I worry about losing my ability to walk. I worry about my ability to provide for my family. I worry about my ability to shoulder this pain. I worry about the damage that this is doing to my heart. And I cry. Because in the dark no one can see me cry. But then, just when I think I can't take it any more- I hear that soft little sigh from across the room and the little sounds as my baby girl shifts and nestles in to get more comfy as she dreams her happy dreams...and I can smile. I can remember what I have to focus on. I can remember that my heart swells with pride and love and admiration every time I think of her, look at her, snuggle her. And I think that yes; I can, I will, I have to continue to fight on.
I am ashamed to say that with my extended pain and sleepless nights my tendencies to want to lash out and swat at people rise as well. If you take a swipe at me, I'm going to go guns blazing at you. If you hurt me, even in the past - well, I'm hurting now and I'll hurt you now thanks so much. I do not like that side of me that RSD brings about. I do not like being a spiteful person. I don't want to be angry. I'm generally a happy person and someone that can turn the other cheek or just brush things off. But something just builds up - and then after so much unrelenting pain - it's like it bubbles and there is a pressure valve and I can not stop it. And while for a brief moment I might feel better - ultimately I do not feel better. I feel like I let myself down. I am better than petty swipes. Stupid gossip. That is not me. That is me giving into the ugliness of this pain, this monster that I'm fighting.
So, I sit and I rock and I worry. I worry about losing my ability to walk. I worry about my ability to provide for my family. I worry about my ability to shoulder this pain. I worry about the damage that this is doing to my heart. And I cry. Because in the dark no one can see me cry. But then, just when I think I can't take it any more- I hear that soft little sigh from across the room and the little sounds as my baby girl shifts and nestles in to get more comfy as she dreams her happy dreams...and I can smile. I can remember what I have to focus on. I can remember that my heart swells with pride and love and admiration every time I think of her, look at her, snuggle her. And I think that yes; I can, I will, I have to continue to fight on.
When the night has come, and the land is dark
And the moon is the only light we see
No, I won't be afraid, oh I won't be afraid
Just as long as you stand, stand by me
Ben E. King - Stand by Me
