Lately I've been thinking a lot about what CF (and fibromyalgia) means to me. So here it is.
CF means having to think about everything that goes in my mouth. How much insulin will that drink require? How many enzymes do I take for this burger? Sometimes its too much work and I'd just rather not eat or drink.
It means planning my day according to how much energy I have. One day I will come home from work and clean my kitchen from top to bottom. Other days even taking a shower is just too much work.
It means unconciously slowing down when I'm walking up hill.
It means hours of nebulizer treatments, vest, percussor, and cleaning equipment every day.
It means doctor's appointment after doctor's appointment. I don't remember the last weekday I had off that I didn't have an appointment. I have my pulmonologist, rhuematologist, nurse practioner at the diabetes center, my general practiotioner, and soon a cardiologist.
It means holding my breath every time I walk by someone who is coughing.
It means having one of those little Purell bottles on my purse, and refilling it often.
It means actually having a good reason to worry about catching the swine flu.
It means always coughing like someone with a 2 pack a day habbit. And constantly having strangers ask if I'm sick.
It means being able to speak the same language as a doctor or pharmacist, and being able to read there handwriting.
It means impressing new doctors with the ability to speak their language.
It means my teeth crumbling in my mouth.
It means knowing what infected mucus looks, and tastes, like.
And that's all I can think of for now.