Normalcy.

...Where to begin? 

Cystic Fibrosis is often referred to as an invisible disease. Those affected may look fine, sound fine, and overall, interact and perform like "normal" people. However, we are far from it. 

Our bodies work hard to simply breathe. We have to consume about 2.5x the calories of a "normal" person in order to maintain our weight. This means eating when we aren't hungry...forcing something down. In addition to that, a handful of pills with each meal, breathing treatments to alleviate pressure, mucus, and congestion throughout the day. Exhaustion. I can't speak for others, but I am always exhausted. Once I stop and let the daily momentum subside, I become aware of restlessness, fatigue, pain here and there. I have nerve damage from PICC lines. Shooting pains up and down my arms are a regular occurrence. Coughing fits that last from minutes to hours, the inability to comfortably sleep.

I recently received a message from someone regarding my personal, work, and exercise involvements. For those of you who follow me on IG or FB, you are aware that I am training for a 60 mile bicycle ride for the CF foundation. 

Why?

Why do I push myself beyond my limits? Why do I willingly wreak havoc on my lungs, joints, and mental processing? 

Because I want to be normal.I don't want to be treated any differently due to my genetic makeup. I don't want to be seen as using my illness as an excuse to passively live life. 

Yes, I am aware of the consequences. Yes, I have done too much and landed in the hospital. 

I've been hospital free for almost 1 year (last visit was only 4 days, no IV antibiotics at home, transitioned to oral upon discharge). 

I know my limits, but I also know my exceptions. 

Some inevitable day, I will succumb to the disease that so quietly ravages my body. The bacteria that are dormant can flare up and rob me of my life. 24 hours in a day and I strive to make every hour count...work...work harder...keep working, push, push harder. 

Every unexpected cough, every fuzzy x-ray, every "antibiotics for two weeks, CT scan in a week, follow up in a month" instills the fear that this it "it." The infection that will scar my lungs, require extensive IV antibiotics...

So,

please don't tell me I "do too much," or I'm "pushing it." I know my body. I know the consequences. I know that someday I may not be able to casually walk up a flight of stairs, much less ride a bike.

I know.

Sincerely,

B.