Wednesday, June 29, 2011
So I love when others decide how severe or mild my CF is. The doctors don't even label my CF so why is it that others feel they know how mild/severe my CF is. People see me when I am out in public, they look at my age, they look at me. To the world, that does not see me in my home doing treatments, meds, supplements, I am super healthy. I am bubbly, outgoing, and seem full of life. What they don't see is how much work goes on behind the scenes to make me appear this way. They don't see the boxes and boxes of meds I have stashed in my closet. They don't see the bottles among bottles of vitamins and supplements. They don't see the hours of time that I sit on my vest, breathe in my nebs, and blow into my flutter. They don't see the sinus rinses. They don't know that I require 8 hours of sleep during the week and that I need catch up sleep on the weekend. They don't know that if I don't spend an hour every morning and an hour every evening doing treatments I feel AWFUL and as if an elephant is on my chest!! They don't know that if I skip my afternoon treatments too many days in a row I will need to be on oral antibiotics. I love that people that know nothing about CF except outdated info that it is a childhood disease say things like, "well if you are 27, you must have a very mild form." It is true that some CFers don't make it to 27 and in that aspect I am very lucky. BUT CF is not a mild disease. CF requires work and lots of it. CF is a DAILY battle that requires time and dedication. CF will never quit and so CFers can never quit fighting it EVERY SINGLE DAY! So next time someone is going to tell me I have mild CF, I am going to make them spend 24 hours doing what I do every single day and ask them if they really think that it is mild.