Okay so this is my first official blog ever and it's funny how little is coming to mind considering how many thoughts consume my mind on a daily (and nightly) basis. I have cystic fibrosis and it seems to be the major component that leads my life lately. All my decisions seem to revolve around it in some way and it drives me crazy. It is my hope that letting some of the words out will lessen the hold it seems to have on me psychologically and emotionally. I will always be reminded physically but tis' life. I would love to stop laying out all my concerns, feelings, fears and emotions on my poor family. They are great mind you and they will say they don't mind but I feel like it brings them down. Not to mention I hate everything always being about me. Every time I find myself uttering words about my cf a recorded message seems to play inside my consciousness saying "stop talking about it, you're giving it power over you". The thing I have been struggling the most with lately is justification for the lifestyle I've been leading. My FEV1s are in the low 30s and I'm currently off work. I'm not on continuous oxygen, I only use it when I exercise although I have been feeling worse lately so I have not been exercising as much. I know I'm on the cusp of a really crappy physical self but I'm still able to do some things so I find myself asking "Am I just being a complainer?" or "Is this all in my head?" I sit around a lot because small things like getting ready or making dinner wears me out. Sometimes I don't do anything at all accept my therapies. When I'm on my IV medications I feel great. I'll probably be starting a dose again soon but the problem is the effects don't last that long afterwards and I'm afraid of always being on them because I don't want to become resistant. I've been evaluated for a lung transplant but they agreed that is was a little too soon. All of this stuff really gets to me psychologically and emotionally. My husband works long hours and the loneliness is tough. The repetitiveness sucks and the lack of energy and drive is frustrating. I've been wanting to do some things on the side as hobbies but the thought of starting anything makes me tired. I know I should speak to a professional which I'm going to talk to my doctor about. I'm sure some of this is related to depression. Anyways, there you have it my first ever blog. What a rant that was. Hopefully the rest won't be so dramatic and be a little more upbeat. Thanks for reading,
Later
Carla