Thursday, January 14, 2016

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.

1 comment:

Nicole said...

Wow. What an educational, inspiring post. You should post a version of this one to your new CBS blog. I just privately messaged you (about watching my entire life my cousin both struggle with CF and also live a very happy and fulfilling life. I love all of your posts but I think this one was my favorite. It's so true. And someone needs to make this disease more visible. Again, I wish you health and happiness. You are so positive and inspiring. Best wishes. ~Nicole Philippi