So many hours have been spent (wasted) contemplating what it means to have a chronic illness. As I sit here and try to remember what I have thought about, I can’t bring it up again. The thoughts are sort of spontaneous.
There have been loads of moments spent in nothing more than self-pity. And the why me’s. Pointless. Useless. Those moments do nothing to help me figure things out or find solutions for my situation. As if there are any solutions for my situation.
And what is there to figure out? Not a ding dang thing. It is what it is. It is what it is. I say that often but I don’t think I really believe it.
Sometimes I don’t really believe I’m sick. I know I am. But there are those moments when I think it’s all a big farce. I remember back in the beginning of this shitty journey, I thought many times about how I was only being dramatic or seeking attention or something. Of course, that’s not true. It’s here. I’m sick. It’s not going away.
So what does that mean to me?
I don’t know really.
My life is different in many ways, but not so different in other ways. Having Coach has made a huge difference. I know if this had come around while I was living the single life, things would’ve been much different. Without his support and love, I would’ve drowned in all the muck. I have a wonderful support system… Coach, my family, at work… all around me. I manage quite well. I’m not sad or angry. I laugh a lot. I participate when I can. I’ve got a positive outlook on most things in life.
I still work. I still go to games. I still go see my family on holidays. So what’s changed?
Mostly the way I feel. Sick. Just sick. And worn out… fatigued, all the time tired. Cramps and fire lade pins poking me here & there. What I wouldn’t give to have one day, even 1/2 a day of feeling good… feeling like my old self. The idea that I will never feel good again is overwhelming. The thought of wearing pantyliners every day for the rest of my life truly sucks. The thought of choking on my own spit, stumbling over my words and thoughts, of feeling like I have the flu every single day….
Last night I dreamed I was dancing. I loved to dance. It was a big part of my life for a long time. Dancing. Coach & I have NEVER danced together. There’s something about dancing with the one you love… it’s close, it’s intimate, it’s warm. I missed out on that.
I’m a hero. I’m strong. I’m brave. But I can’t dance anymore.
I hate pink. I despise pink. There, I said it. I refuse to buy anything that has a pink ribbon on it. I know that’s ugly of me. But I might feel differently about it if one day I walked into the store and saw orange ribbons on every damn thing in the store, or purple, or white, or blue.
I hate pink.
Wrapping my brain around the thought that I will have this fucking disease for the rest of my life… that it will get worse… that I will feel worse… I hate it. Just about as much as I hate pink