Living with cystic fibrosis can be difficult even at the best of times, but receiving care in your home can at least help you be comfortable while you cope with your condition. If you're considering moving from the hospital back into your home, here are a few tips to help you continue improving your health.
Don't Let Depression Make You Sicker
Patients with cystic fibrosis are unfortunately also faced with a higher risk for depression, due to the disruption and difficulties inherent in their condition. Even worse, depression can make you sicker by making it difficult for you to take care of yourself. Now that you'll be responsible for taking your medications at the right time and keeping yourself clean and well-fed, it's more important than ever to be aware of this risk.
If you become depressed, you may feel unmotivated and lethargic. You could find it hard to keep up with your medications as you lose your willpower. People with depression sometimes have poor hygiene as well, which can significantly raise your chances of getting an infection and being hospitalized.
To help stave off depression, make sure you get plenty of sunlight each day. Eat a balanced diet, exercise as much as you can, and give yourself time to enjoy creative pursuits whenever possible. Tell your caregiver if you feel down or listless for several days, as these may be the warning signs of depression. You should also talk to a therapist or counselor regularly in order to keep your mental health in check.
Multitask With Your Medications
Cystic fibrosis sufferers frequently must receive IV treatments when their condition is exacerbated. Since these treatments take hours to prepare and complete, they can make it difficult to get everything done like you usually would. When you find yourself in this position, multitasking is key.
First, you should plan your day around receiving treatment. Try to complete any tasks that require physical activity before you begin, so you won't be pressed for time after your IV is flushed. While receiving treatment, it's a good time take your oral medications and use your breathing therapy devices. If you work from home, you can use the time when you are on your IV to do light work from a tablet or laptop. It's also a great time to catch up on any extra sleep you might need.
Try to be mindful of your time outside of IV treatments as well. For example, take opportunities to clear your airways while riding in the car or during the commercials of your favorite TV show. The more of your healthcare routine you can get done in your spare moments, the more time you can dedicate to relaxing and focusing on things you really want to do.
Don't Be Afraid To Ask Questions
The primary goal of home care is to help you heal in a comfortable setting, so don't be afraid to put your comfort first. The best way you can improve your own comfort and quality of life is to get informed about new treatments and equipment for people with cystic fibrosis. If your oxygen mask is bothering you, for example, don't be shy about asking for a new one. If you dislike carrying your IV pump around, ask your caregiver for one with wheels. It might surprise you how much these little changes can help your life be more convenient.
Don't be afraid to ask twice, either. New technologies are being developed all the time to help people with cystic fibrosis, but that doesn't mean your agency is aware of them. If you want to try a new medication or switch to a different piece of equipment, go ahead and badger your agency a little bit. Ultimately, your caregivers want you to be healthy and happy, even if they resist experimental ideas at first.
For more information, talk to your home health care provider.