When you have cystic fibrosis, it is so easy to lie around all day when you are feeling sick; but it is important to keep moving, no matter how small the task or how short the movement. Moving is great for supporting lung health, and it helps you cough up excess sputum, which normally plagues me when I am having an exacerbation.
Another critical activity is eating, especially when you are ill. If you do not eat enough, especially protein, your body will start to feed on your muscles. Eating well is vital for recovery and strength. Here are some things you can do to help yourself at home:
- Take the long way to the bathroom. This may mean taking a lap or two around your house before using the bathroom and then doing the same thing on the way back.
- Walking around your favorite store even if that means you haven't showered in a day or two and your hair looks awful. Don't care what you wear -- just get your butt there.
- Tow that oxygen! On multiple exacerbations over the years, I've had to take a portable oxygen machine with me along to the store. It's heavy and cumbersome, but I just throw it in a shopping cart and start my hike around the store.
Tips for eating at home
I frequently have bouts of nausea while I'm on IV antibiotics. Certain foods -- even some of my favorites -- can cause me to become sick instantly. During this time, my husband lets me choose what's for dinner, and each night will be different. Sometimes I'll want a home-cooked meal, while other times I prefer quick takeout.
Pick foods that are rich in protein. Ever hear the phrase, “Protein helps you heal?” Well, I grew up hearing that, and each time my mom says it, I STILL have to give her a HUGE eye roll. It frustrates me greatly, but I know she's right … even if I never tell her that.
Sometimes when all else fails, just getting in calories is super important. When I'm on an IV, I'll eat my “growing food” first (protein, real food) and then -- to help my body keep on weight -- I'll reach for that blueberry muffin, brownie, or soft pretzel.
Take a walk (with a mask, of course) around the unit. Venture farther to other parts of the hospital or to other floors. Your care team will be quite impressed that you are taking the initiative to walk around and will not hold you back.
The easiest place to lose muscle mass is when you are in the hospital -- you may not be eating as much with limited food options, your bathroom is only three steps away, and the staff waits on you hand and foot. Get in your exercise by wandering around. Ask for a portable oxygen tank, make sure your IV pump is fully charged, and then walk. Before leaving, always let your care team know you are taking a walk. Be sure to walk between IV antibiotics and breathing treatment times, so you don't miss any medications or treatments.
Your TV and bed will always be there for you when you get back. Make sure to move when you get a little bit of energy. It's better to be moving slowly, then to be lying down all day just letting the infection fester.
Coping with hospital food
Definitely have your friends and family bring you good food. A limited hospital menu can get old really quickly, and your body will need the calories to help you keep your weight on and your strength up. Bring your favorite snacks to help supplement the hospital menu. If your friends and family are busy, don't forget that food delivery companies exist and can deliver orders to the hospital. Employees at all hospitals order out every day. Find out where the food delivery location is at your hospital, and start making some delivery calls.
I know getting off the couch when you are sick is the last thing you want to do. I know you are breathless, exhausted, spent, and are fighting hard. I'm with you! Just know that walking, even slowly, is great for your mental and physical health.
While I breathe, I hope.
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