Being chronically ill you learn how to put on a fake smile and how to completely fool people by saying “I’m fine” when you’re actually completely falling apart in every way imaginable. If I see you later this afternoon I will tell you I’m fine, but right now I’m going to let down my walls and tell you the truth.
I’m not okay. I am hanging in there, that’s not a lie, but it seems as if I’m hanging so low to the ground that I’m just being drug around. I feel worn, emotionally, physically and spiritually. Getting out of bed these days is a fight. Not just emotionally, but physically.
I don’t like to admit when I am weak or tired or hurting, but I need to learn how to be honest with my feelings, both physically and mentally. I’m really tired. It’s a type of tired that creeps into your bones, your muscles, even your cells and weighs you down so that everything you do is a fight.
I’m sick. It’s okay to say it. It is the truth. No, I don’t have cancer and no I’m not going to die, at least not today. But, you need to hear me when I say this, I need to hear me when I say this, I am sick. My body is attacking itself from the inside. My body is at a war that you can’t see, but I sure can feel. So, when I say I’m fighting, I mean I’m literally fighting.
February wasn’t filled with a lot of good health news for me…
My heart is fighting to beat. We’ve gone beyond a normal diagnosis of POTS. We are in unchartered waters. I’ve woken up numerous times this month gasping to catch my breath and clutching my chest as the world spins around me. My heart isn’t doing its job. The medicines aren’t enough and maybe even they’re too much. We don’t know. My heart rate has been dipping into the 30’s and in the same hour will soar to 150 and beyond.
My joints are disintegrating. About 6 months ago I took a break from x-rays, MRI’s, CT’s and every other way that they could tell me what I already knew, my joints were and are disappearing. I didn’t want to hear it, I didn’t want to see it, I felt it and that was enough. But, when what I was feeling became too intense they talked me into MRI’s, CT’s, X-rays and bone scans. They saw what I’ve been feeling. The damage to my feet, my knees, my hips, my spine, my neck, my jaw, and my hands is undeniable and fierce. My bone scans lit up with inflammation. Even my GI tract is consumed by the fire inside me called inflammation.
My body has become really tired and with that, so has my mind. The damage and the pain continue to grow, it is a wildfire that does not want to be contained nor controlled. Terms like biologics, pacemakers, joint replacements, and multiple surgeries are all being thrown into the conversation. If you see me this afternoon I will reassure you that I’m fine, but if you want to know the honest truth, I’m not okay, I’m a distance from it, but I am hanging on.
Leave a comment