Monday, May 15, 2017

CF Awareness Month - Oops moments and Fatigue



May is CF awareness month and many of the bloggers I regularly follow are doing posts dedicated to bringing more awareness. A fellow blogger, Breath. Love. Justice, has been doing the 31 Day of May blog challenge. I had participated in this a few years ago and after reading her posts I went back to check out mine. Apparently, I made it through the first ten days and then randomly did day 14 before falling off. It was interesting for me to see how much my perspective and life has changed in the past 4 years. I also felt like I wanted to join in and finish out my 31 days. I can't guarantee that I will do the last 17 days, but here is my attempt!

Ahhh, fatigue and CF! I am not sure many people can understand the exhaustion that comes with a bad respiratory infection. Bodies of CF patients are already working harder which means we already have lower energy levels. Now add a really bad infection and it is a recipe for disaster!

The absolute worse oops moment due to CF fatigue happened when Kaylee was a toddler. I was home alone with her and I was so unbelievably sick. I was on IVs, but I was so fatigued that within two hours of waking I would be so exhausted that I wondered how I would survive being awake until nap time. It felt like torture trying got keep my eyes open, let alone function as a mother. Looking back I am almost positive I was so sick I needed oxygen at night, but since I was doing home care nobody knew. I was waking up with extreme headaches and felt as if I didn't sleep at all. I assumed it was just part of being sick, but now that I know the symptoms of low O2 at night, I am sure that was a huge part of my feeling like the walking dead.

Anyway, Kaylee was playing with a puzzle (or something quiet like that) on the living room floor. All I could manage to do at the moment was lay on the couch and watch her play. The next thing I knew I as laying on the couch opening my eyes from a spontaneous nap!! I had no idea I had fallen asleep! I also didn't know how long I was asleep!! I am sure it wasn't long because Kaylee was still sitting in the same spot. I felt like I had failed at the most important job in the world, keeping an eye on my own child!

Full disclosure: There were times when I would be really sick that I would put Kaylee in her crib (that was next to our bed) with toys so I could get a quick nap and I knew she would be safe. This however was the one and only time I just fell asleep without even realizing it!

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