When the Sick Life Wears You Down: 25 with Cystic Fibrosis

By Rachel Whidden

(CBS) — The sunsets lately have been either stunningly bright and beautiful, or else they fade from gloomy daylight to black.

I watch both out my window here at the hospital every night, switching from staring at the sky to my own reflection. Guiltily hating all the cords connected to me, knowing I'm lucky to have such amazing medical care, yet resenting the fact that I need it in the first place.

I hate looking at myself this way. I hate feeling connected to so many machines. Heart monitors, IVs and oxygen tubing and, at times, feeding tubes. I hate the way my hair feels after washing it in the sink with the hospitals "27 uses in one" shampoo.

I feel slowly suffocated not just by my lungs that refuse to work, but by the constant monitors and the tubing that surrounds me at all times. I hate the hospital.

Today marks Day 8 since I packed up and checked in to deal with some breathing problems I was having and to address the constant nausea and lack of appetite that's been wreaking havoc on my life.

The root of the problem seems to be stemming from a new medication I had started close to a month ago called Orkambi. I was absolutely ecstatic to start taking this when I was first approved for it, as it was referred to as a miracle drug for CF patients.

With it, I envisioned a better future with healthier lungs and fewer stays in the hospital. What I didn't foresee was how crushed I would be when it didn't work out.

While admitted in the hospital, my laptop and my cell phone become my lifelines to the outside world.

I stay connected to my friends and my family through texts, Skype and social media. This can be a double-edged sword at times.

On weekends, my newsfeed is filled with photos and status updates from concerts and dinners out, brunch with the girls or lazy Sundays with the family at home. All of which I tend to post about myself when I'm home, but seeing others' lives from in here makes it a little bittersweet.

Anxiety and moments of depression seem to find me and walk with me down the hallways, and frustrations from multiple doctors saying multiple things have me feeling a little down.

Being on the transplant list is no walk in the park. I knew none of this would be easy, but I didn't see it being this hard. Nobody can prepare you for these types of emotions.

I don't believe there's enough time in the world to ever be prepared for the rollercoaster that getting new organs can take you on. The highs and lows are incredibly tough to manage.

I'm just so ready to get my life back and feel like the old me, the carefree me that wasn't worried about whether or not my lungs would give out before I got to accomplish the things I want to do in life.

The sick life is wearing me down and I need a break.

If only that was actually an option.

Rachel's previous posts:

A New Normal: Life at 25 With Cystic Fibrosis

Life With Cystic Fibrosis: Waiting for New Lungs, Grateful to Be Home

Back in the Hospital: Life When You're 25 With Cystic Fibrosis

"I Have Cystic Fibrosis But It Doesn't Have Me"

Rachel Whidden is a professional patient with cystic fibrosis who resides in the Chicago suburbs. She works hards to live each day to the fullest. In addition to contributing to CBSChicago, Rachel blogs at Living Fast Dying Young: My CF Life. You can also follow her over on new Facebook page!

What is cystic fibrosis (CF)?

CF a genetic disease that leads to severe damage to the lungs and digestive systems. Here's how the Mayo Clinic describes it: "A defective gene causes the secretions to become thick and sticky. Instead of acting as a lubricant, the secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas."