Realizing your at the mercy of cf and everything it does to you and your not able to make the improvements in your health like you use to. Learning to cope with your new baseline is beyond disappointing in so many ways. I become disappointed in myself, my health team,my decisions..shoot at times my life.
I always knew this was a progressive disease but I started out so strong and now I see the toll this has taken on my body. Never thought I'd be where iam today
Even though it sounds like I'm sad I'm really not. I understand it's just the way it is... I can only control so much. It makes me enjoy everyday a little more because I never know what tomorrow will bring.
I'm laying In bed at my parents cause of my iv schedule it's hard to handle it myself and get the rest my body demands. My husband is working nights and quite frankly I don't like to be alone at night. That's when my mind gets the best of me. My demons show up and sometimes they are stronger then me and take over my mind. It's easier to be surrounded by my family and dogs. Even if they fart a lot. (The dogs not my family)
I know every cough my mom hears even from a dead sleep. That's a cf momma right there. A damn good one too. So when I sleep over I sleep great but her on the hand sleeps with her ears listening to every cough and noise. Uneasy sleep. But a complete feeling knowing we're all together.
Peace love and hello kitty to all
And to all a goodnight