Do you ever wake up in the middle of the night in complete pain and think, this just can’t be right. No one person can possibly be in this much pain at one time…sometimes for days on end. The day before yesterday my feet began to swell after spending a day with my skin tingling and burning.
Yesterday I spent the entire day completely inflammed from my scalp to the tip of my toes. Red, splotchy, swollen, stinging, burning, itchy…my clothes felt like sand paper. My feet barely fit in my Uggs. I found myself in tears, cursing my own body for letting me down once again. I wanted to scream at my brain, “This is all your fault! You have to be stronger than this! Block out this pain! It isn’t real! Stop exaggerating!” But the ringing in my ears, the burning of my skin, the ache in my head and the pain in my chest told a different story. This pain was very real.
I tried to remember how I dealt with this on a daily basis when I had my infected colon? How did I get through it every single day? Spending everyday trying to muster up courage to face the pain head on. Pushing down the screams back down my throat. Sucking the tears back into my eyes. Fighting until I had nothing left, and begging for sleep. How did I do it? The pain I experience now is just a quarter of what I felt then, and even that is too much for one person. This chronic illness life is not for the weak. I remember talking to grandma one day about her lupus and how she was dealing with it. And she said, “I’ll tell you one thing I’ve realized. As the kids say, ‘I ain’t no punk b**ch!'” I don’t know why that makes me laugh hysterically every time, but it’s actually very true. My skin is as thick as steel. My mind is calm and logical at all times. I’ve become Hulk-like when it comes to tackling all things medical.
I think that sometimes because I find myself fighting so hard, I think that maybe just maybe I’m making it up. I’m dramatizing it all in my head. But then I look in the mirror. I look at the almost full water bottles I can’t drink. I hear my answer to my mother about how many times I wasn’t able to eat in a day. I read tweets by IBD patients describing the same pain and anguish. It’s then that I realize, it’s not a theater piece. It’s very real.