Monday, June 17, 2013
Chalking it up to a blah day
Being a strong person is a gray area. What exactly does it mean to be a "strong person?" Is it that you do what you gotta do when you gotta do it? Is it that you hold a warrior stance in front of other people? Is it how you can act ok and then go home and have your moments? What is it?!
Those who truly know me know that I don't think myself a true fighter. And now I am here to tell the rest of you that its true. I am not as strong as people think, as I show on the outside. Yes, I can go and do the things I have to do when I have to do them. But I go with much anxiety, frustration, and hatred for this disease. I go to get it done, hoping tomorrow is the day the cure is found. Then I go home or get done with what it is I am doing and tear up wondering if I did the right thing. I never know if the choice I make for my CF is the right one, I just know I will try anything to live a little longer and hope to make the future a little easier.
I feel CF is robbing not only me of a life, but my daughter of a good mother, a husband of a wife, and my family of yet another member. I want Laila to have a mom who can run and play, not look at her and tell her since I showered and cooked that now I have to sit tethered to 3 or 4 tubes/machines in order to be able to have a good rest of the day and week. Thats sad. Plain and simple...sad. Jeremy has to pull triple duty on days and be the bread winner, dad, and mom. That isn't fair. He deserves a break.
Today is a rough CF day, not because I am feeling bad, because really I am starting to feel better thanks to my at home nurse, Jer, and my meds. But my life is hard to watch sometimes. And thats crazy to me. I remember the days of somewhat health and I want them back, and even better than I had. I have said it before and I will say it again...I am a healthy person stuck in a sick girls body. I want out of it. I want to break free. And the thing I have to look forward to is a transplant, a terrifying thing. And that not even a cure. At best, it will help a great deal and give me a few more years here on earth to make sure my daughter learns what a mother needs to teach her and that my husband knows he can do things even if I am not around! Gosh, i just hate this.
So is that being strong? Is just being glum being strong? These are the moods that just make me wonder how much longer I can be a strong fighter. Not that I will ever quit the fight or stop trying, but how much longer will my body and emotions let me. This is me...not a strong person. But one that has so many weaknesses that I try to hide behind a strong face. I have been taught that I can't tell people I am OK when I am not, when it comes to CF I have to be honest with where my health is. Not only for me but for everyone.
So, yes, I am sick. I am suffocating. I am slowly watching my body go under and see how it affects the people close to me. It hurts to watch my daughter be sad because I can't push her on the swing or just play in general. It hurts to watch Jeremy look on not knowing how to help. It hurts to think of what I was, of the energy, lung capacity, weight, personality that I once had. No matter what I could prove the doctors and everyone wrong. Stubborn in order to survive and beat all odds. That was me and the one I am trying to find deep inside. She has to be there still, right?! She is buried in the burden of CF and sadly I am not sure how to find her. The pressure and the waiting is eating me alive, consuming me.
Being strong...I need to figure it out.