Wednesday, 11 February 2015

Losing my grip (and my mind)

Today, just like everyday I hate CF. Hate it. It is a bastard disease that I would wish on no one, especially one of the people I love most in this world. My soul. The very reason I get up and keep going.

Clinic yesterday was just crap. After such a huge slide in lung function, doing everything we could then doing an admission and crawling those numbers back up....BANG - we are where we started on December 17th. I am so pissed, so angry and disappointed and disillusioned. I HATE putting on my mama face today and pretending all is ok. I look at Julia and my eyes fill with tears. SHE tells me not to give up (as if I would!!!!!). I want to grab her positivity today as I feel like I'm losing this battle. I'm really scared because she's never had numbers like this before if she wasn't sick. So frustrated and angry and hurt that 100% compliance means sweet fa with this cow disease. Man I hate you CF.

You'll take me down screaming and fighting CF. I'm scared but I won't let her go. We've got to beat this as there is no alterative.