Based off of my experiences, I've composed a list of 6 rules of living with CF. Please note that these are my personal opinions from 25 beautiful, complicated years of life.
1. You will fail. Know that you will fail, expect to fail, learn to embrace your failures. No one is perfect. While other's lives may seem so, keep in mind that you're seeing the performance and not what goes on behind the scenes. You will not always be 100% compliant, your PFTs will rise only to fall, you will gain weight to satisfy your doctors, and a week later you will have lost double what you just gained. Failure is a part of success. The beauty of life is that it goes on, so get off the ground, wipe yourself off, and hold your head high. You're doing great.
2. Trust your doctors and other medical professionals. If you have questions, ask them. Never hesitate to ask, even if you think it's stupid. They are our resources and we need to utilize them! I decided to switch doctors shortly after transitioning to the adult clinic. I wasn't sure what I was getting myself into but I wanted a second opinion. My second opinion resulted in me being hospitalized, not improving, being discharged, only to return again two weeks later. During my second visit, I had a PICC line that took 3 hours to place, three IVs misplaced, and a severe anaphylactic reaction to an antibiotic that was on my allergy list. I set my pride aside, returned to my former doctor, and all is well. Make a list of questions that pop up between visits, get to know your doctor, and learn to trust him.
3. Be careful who you share details with. I am generally very open about my condition but there have been times with my willingness to share information bites me in the butt. I have had friends use discussions about my health as a way to retaliate, blackmail, and eventually sever the ties of friendship. Isolation can lead to depression, so don't cut everyone out. Learn to trust your friends and remember, if they confide in you, keep it confidential. Sharing their personal information with others can lead to them doing the same.
4. If someone offers help, accept it. I'm fortunate to have a few close friends who constantly offer to help me.Whether its picking up a prescription, bringing me dinner, or sanitizing my apartment, it makes a big difference. I am so thankful for those who consistently go out of their way to ensure my health and comfort when I'm sick or in the hospital. It is less of a burden and a reminder that I am loved. If someone offers, say yes! And when they're in need, return the favor! It's a humbling experience to be on both ends.
5. Sometimes, you'll have to put yourself first and that's okay! It's happened to all of us. A friend's birthday party, wedding, a concert you've already paid for...you're anxiously awaiting for the day to come. You've been looking forward to it for so long and you're ready to have some fun. But...CF happens and you're exhausted, running a fever, and have rings under your eyes. Well...maybe you'll just go and rest tomorrow. But then again...you really don't feel well. Weigh your options. Go and get sick, push yourself to the limits and land in the hole. Cancel your plans and rest, do a few extra treatments, and feel better. Sometimes you have to put yourself AND your health first. Yes, we all want to have fun, but make sure you're not pushing yourself to the limits. It's easy to get sick but hard to get better.
6. BE HAPPY. Depression and anxiety suppress the immune system. Chronic stress is proven to decrease the immune system's response and will essentially send you into a downward spiral. If you're struggling with depression, talk to someone on your CF team about it or seek help from a medical professional. One thing you can do to tackle your depression is make a list of good things that happened each day. This will allow you to focus more on your accomplishments and the positive things in life. Overtime, you will create a pattern of positivity and it will become a self fulfilling prophecy!
What rules would you recommend?
With love,
Rebecca
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