Too be honest, sharing about Cystic Fibrosis can be tough in the first place. I always try to be open about my CF though. I think it makes things easier in the long run. No weird looks when coughing, or comments about being contagious. I don't want sympathy, just for people to be aware. Plus, the more people know about CF, the more awareness for the CF Cause. How to tell people???
Well I don't say "Hi, I'm Cheriz and I have CF".... That sounds so drone-like and weird. I usually try to tie it into conversation. By saying something about my volunteering for the CF Foundation and follow that up with "because I have CF." I also tell people to feel free to tell others if they wonder why I cough, etc.
The weird part is now that I'm getting older and my CF is becoming increasingly more difficult. While most of my family members and friends could rattle off every surgery, my current lung function, weight, and secondary problems, in a second. I feel most family, friends, and even myself don't notice the changes in my health over time. Since they have seen me grow up with CF and watched me slightly decrease in health little by little, they overestimate my health sometimes. Even I forget and do too much sometimes. It just happens.
Partially, it may be wishful thinking, determination, my bubbly personality that hides it particularly well. Or perhaps it is hard to notice. I can't blame anyone for it, I mean think about someone who changes their make up or hair... By the time it is a new style you are so used to it, you don't realize how much different it was than before.
By no means am I saying I'm in horrible health. Just that I'm not as healthy as I was perhaps 5 or 10 years ago. It is hard to notice. I do 3.5 hours of treatments a day, sleep the 10 hours a night (so I don'y feel like a truck hit me the next day), eat about the 3 meals and 5 snacks a day totaling over 3,000 calories (which I need to up)... I try to add in a 30 minute exercise or nightly walk, plus my monthly 5k. My daily stretching (for my Cerebral Palsy). The day after shopping, running errands, and grocery shopping I usually crash. Housework and yardwork can take me twice as long, because I get out of breath...I forget most of this and try to keep up with everyone else around me.. Only afterwards do I realize the difference. Did you know it takes me 3 days of lying around after a 5k to be able to walk again. I literally am in so much muscle pain that I can barely walk for 3 days. Plus, my back and hips hurt weekly. My stomach and bathroom issues arise every few days too. It's hard to trying to remember everything I need to do, just to keep myself healthy. I feel like I need a daily checklist to stay alive.
I will push, but when you are at the point the doctors says "At this lung function range you may have some complications with your eye surgery. Since they are doing general anesthesia, your lungs may not respond and breathe on their own right after they take the breathing tube out. So if you wake up still intubated, don't worry, it jut means they will have to wean you off the breathing machine." She also followed that by saying that she really didn't think that would happen, she just wanted me to be aware of worst care scenario. I respect her for always being open about all possibilities, but I'm also a little freaked out by the fact that I'm in "that range of lung function" now. Can I get out of that range now please?!?
While I was actually 58% in lung function, I felt I can still do better if I keep at it. Realizing with age comes lots of secondary problems though, which is why we may not notice those changes..
I feel family and friends understand the most, but at the same don't notice the changes over time, just like I don't sometimes. I'm not sure how you look at a friend and tell them you are down in lung function and really have them understand what it means, unless they have CF... I don't want to upset them or freak them out. I don't want them to think that I'm defeated or ever giving up. It is hard to talk about, so most people just causally ask how my health is and I casually say fine. Or if they read my blog, they understand a bit more. How would you tell people? What do I even want people to say to me after a clinic? I have no clue. It's tough to face some facts, like how hard or complicated CF can get. I just know I need to pay attention to my body and understand it.
I need to especially understand my limits in order to succeed. And I DO PLAN ON SUCCEEDING. Watch out next Clinic Visit HERE I COME!
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