My Illness is Invisible, But I am Not.

This morning i woke up and took the puppy out like every other morning, made a cup of tea to drink while i do my treatments, and got all my meds ready. Suddenly i had a coughing fit and when it was over the tissue i grabbed was filled with bright red blood. Yet i dont panic. I throw it away and i finish strapping on my vest and filling my nebulizer cup with the vial of albuterol i pulled out along with all my other meds and start my treatments with a few extra tissues on hand and an old t shirt so i dont stain my pj tank if i cough more up suddenly. This is my CF life. This is something i dont worry about unless it gets worse. This is just something ill mention at my next appointment, but its no big deal. This is what nobody sees. People look at me and see a fairly normal girl, sure i have oxygen on, but i dont look sick. My face is full and i laugh and smile and run errands and go out with my friends. What they cant see is how hard my heart is working to keep my lungs moving. The strain makes my normal heart rate in the 100s at times. They cant see the build up of secretions making me work for every breath i take. Thick sticky mucus that clogs my airways and chokes me on a daily basis. Strangers on the street dont know that ill spend hours today inhaling medicines and working out my lungs just to stay stable at a measely 28% lung function, they dont know that by the end of the day ill have taken close to 30 pills to maintain my weight, mental stability, vitamin levels, digestion, control pain, and fix various other things that my body cant maintain properly on its own. Yet youd never know. This is where the term invisible illness comes from, There are 30,000 other people with CF in this country going through this similar routine and youd never guess. The things we go through seem impossible to most, yet this is our life. This is normal. Lately ive been really aware of the lack of awareness to invisible illnesses, not just Cystic Fibrosis, but so many others as well. Ive gained friends with struggles youd never know about yet they're barely hanging on. If you take anything away from reading this today its just be aware. Be aware of everyone around you. When you see a young girl park in the handicapped spot your not a hero when you tell her she should be ashamed to take that spot from someone who needs it because she probably needs it more than you know. When you see a man coughing dont assume hes a bag of germs and give him dirty looks his lungs may be doing the best they can. Next time you make fun of someone for being skin and bones because "real women have curves" keep in mind all the women who struggle day in and day out to eat as much as they can but their bodies refuse to take the nutrition they consume. Be aware that these struggles exist and just cause you cant see them doesnt make them non existent. My disease is very real and i feel it every day.

Keeping Secrets

I had just finished reading "The Fault In Our Stars" (by John Green) and i could really relate to Hazel, not with the part about cancer, but we share alot of the same issues with breathing, having to carry around an oxygen tank (although hers is 24/7, mine is only occasionally) and the way we feel about knowing our diseases will kill us one day, but also about the way we feel about having other people in our lives. I dont have to use my oxygen 24/7 yet and so when people look at me they see a normal girl and have no idea how sick i really am and i like that, i always hid the fact that i have CF from people. Part of it was that i really didnt want them to treat me differently and also because as hazel describes it "Im a grenade, and at some point im going to blow up. Id like to minimize the casualties." I always kept the secret, it was exhausting. One day i decided that im getting sicker and sicker and its not going to stop so why hide it. Am i gonna trick someone into being a part of my life? How would i cover the weeks i spent in the hospital? Besides, awareness is key the CFF needs donations and people need to know about CF me hiding it does no good, and for a while i got nothing but support. Everyone was there for me they seemed like they were fine with it but the other day i posted on FB about needing oxygen again and my friend kept telling me to rest up, feel better, and let her know if im feeling up for plans we made for later this week....i need oxygen i dont have an infection, i dont wanna sit at home but she was really insisting i "rest eat and sleep". Explaining to people that im fine just a little short of breath always falls on deaf ears they are convinced i need to sit in bed and sleep all day. It reminds me why i hid it all those years i didnt want this to happen. If i feel i need to stay in i will but i hate that people try to decide for me, also might i add that while they dont invite me out because they are convinced im too sick they also arent willing to come over and hang out with me here. Its hard because i know there is no cure for CF and one day it will kill me, transplant is not a cure if it works it adds years but doesnt make CF go away, and they want me around as long as possible but id rather live a life i love and am happy with than live twice as long and sit in my bed all day resting and eating...it makes sense to me. I also get really weary about telling new people in my life about my CF because it makes most of them wanna run, nobody wants to deal with that and if they do stick around i know eventually theyll leave because i will need them more than they need me, and who wants to deal with that? Nobody wants to be with somone who has an expiration date and i dont blame them, i dont wanna be responsible for promising someone forever and leaving them halfway through. Maybe one day ill find someone / friends who dont see me that way, but im doubtful.