The thing nobody tells you about when you’re learning about your disease and how it will affect your life is how being *sick* is the expectation – for the rest of your life. There is no such thing as normal life when sickness is your baseline. And having a disease that prevents you from being around people when all you want is to relate to somebody is just tragic.
I suppose that’s part of the reason for this blog. Besides just an attempt at long-form internet connection, hopefully with some other CF havers, I’m enjoying having this little space to work out feelings about things.
For example: at lunch today I ate my usual 2000-calorie meal (cheeseburger with bacon, mac and cheese, salad, milkshake) plus my enzyme pills, plus my vitamins. My body requires a huge number of calories, preferably from fat, because of its inability to correctly absorb calories. And then I have to take these pancreatic enzymes so that my body can process the fat carrying the calories.
And then a schoolmate looks over and says, “Gosh I wish I could eat like that every day” and I want to punch her head off because eating this way, every day, when society keeps telling me to diet, lose weight, get that beach body, seriously sucks.
And then, every three hours when I have to leave class to have a high calorie serving of calcium because my bones are inundated with fat and calories and need strength from calcium, I don’t enjoy sitting alone in the nurse’s office eating cottage cheese out of a Tupperware.
I also can’t risk getting a cold because my lungs are basically already those of a 70-year old lifelong smoker so one cold could just knock me out. Hence, my very fashionable face mask that I wear on days when I decide I’m feeling healthful enough to leave my wheeled oxygen tank at home.
This sounds whiney, I KNOW. But you’re the one who came back to this blog, as written by a sick girl.