What it’s like to live with Cystic Fibrosis

Life with cystic fibrosis is hard. I mean doing hours of treatments and taking lots of pills can be a challenge, but I get through it… mostly. I live with a disease called cystic fibrosis and let me just tell you it’s a pain in the butt. You see, my lungs create stickier mucus than people without cf and it causes lots of problems throughout the body, the mains ones being lung issues and pancreatic insufficiency.

Having cf Is very lonely at times. Due to cross contamination (passing germs or infections to one another) I can’t be within 6 feet of another cf patient, except my twin of course. It’s also been harder dealing with being different, especially in these past few years. It’s hard to be in hospital when kids my age are in school and doing things they love, when your doing hours of treatments a day while other kids are our doing things with their friends, when I can’t do as much stuff as other kids because I don’t have a whole lot of energy and get tired easily.

Another thing that has just happened the past year when I started getting lung infections and getting admitted. I would mistake my washing machine noise for an iv machine, thinking that whenever I leave a room I have to put a mask on because I have to wear a mask in the hospital. Other things that my health has made me feel is I’m sick of driving, I don’t like going places more often because I just want to be home because it feels like I’m always at doctors appointments, I don’t have an appetite so I hate going out to eat.

Living with cystic fibrosis feels like a full time job. Always having to do something with it, putting lots of time and effort into it, except I can’t get fired from it, that’s the only thing I wish could happen, that it will go away.

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