So what is my typical day like? The best answer is: There is no typical day. Trusting the typical is difficult when fighting this disease. The thing to keep in mind is that there are more than 1,200 mutations of the disease. That means there are more than 1,200 different ways that CF can affect someone. If you add other genetic traits besides environments, you’re literally talking millions of ways. So remember, this is MY average day. There are some CFers that have my battles multiplied by 100 and some CFers that have no complications besides the fact that they can’t sire children. CF comes in all shapes and sizes, but this is what I would consider my “typical” day.
I never know how I’m going to feel in the morning. Many times, I cough all night or wheeze (so I’ve been told). When this happens, I never fall into a really deep sleep. Without the help of a sleep medication, I usually feel as if I hadn’t slept the night before. With a sleep medicine, I have to spend a certain number of hours sleeping, or I feel groggy in the morning. So if I can’t take the medicine and put in those hours, I usually feel like I didn’t sleep (or got very little sleep) that night. So of course I feel tired and sluggish throughout the day.
That said, the first thing I do in the morning is exercise or my treatments. If I can breathe without doing my treatments first, I like to open up my lungs before my exercise treatments. After exercise, I do my treatments. Treatments include aerosol medications, oral pills, and manual airway clearance. Treatments can vary, but always include medicine (albuterol and atrovent sprays) to open up the airways and decrease swelling, medicine (Pulmozyme spray) to thin mucus, and a device that I use to shock my lungs and try to move the mucus around and out. Sometimes I also take medicine (TOBI spray) which is an antibiotic to kill the infection. I also take about 40 pills a day. Most of these pills are digestive enzymes (Ultrase MT 20) and the others are vitamins, antibiotics (azithromycin), and an acid neutralizer (Protonix).
After my treatments I usually take a shower. I only mention this because a lot of times while I’m in the shower, I vomit. Depending on how much I coughed the night before, I will usually throw up all the mucus I coughed up during the night. I feel nauseous most mornings. If I ate late the night before, you guessed it, that also comes up. Most CFers have a malfunctioning digestive system. This causes nausea, bloating, irregular stools, and an inability to get adequate nutrition from the food we eat. You can’t tell by looking at me, but many CFers struggle to maintain a healthy weight. It hurt me to be able to call myself “obese”.
After the shower, the activities of the day begin. For me, that includes blogging, volunteering, speaking, and trying to be a blessing to others. There are times when I have a hard time leaving the house and getting going. CF forces find me a balance between taking care of myself and “living life”. There is no doubt that if you did 10 treatments a day, you would be healthier. But what kind of life is that? Treatments require sitting and being still. Would anyone choose to commit 8-10 hours of their day to treatments? Making you in some respects a “prisoner in your own house”. I know I wouldn’t. However, I try to commit to at least 3 treatments a day and usually 4. This is what my doctors recommend, so that’s what I try to do. Do I always do three a day? Of course not. But writing for RunSickboyRun.com has also provided me with a minor excuse not to do my treatments. I’m already sitting down writing; I could also put on the vest and put a nebulizer in my mouth. As I get older, my maturity and my health tell me how important it is to be faithful to the treatments.
I live my life to the fullest. When I’m not doing treatments, I try to be active. This also affects my health in a positive way. The more I move, the more I cough. The more I cough, the more my mucus moves. The more my mucus moves, the more easily I can get it out of my lungs. The less there is in my lungs, the less chance of inflammation and infection. Less inflammation and infection, the easier it is to breathe. The easier I breathe, the better I feel. Ah, the “Circle of Life CF”. Sounds easy right? I wish it was that easy.
My CF “Circle of Life” also includes hospitalizations every 3-4 months. I am hospitalized 3-4 weeks at a time. I stay in the hospital about 80 days a year. That’s about 20% of my (and yours) year. I don’t say this out of pity. I never look for mercy. I say this simply as a dose of my reality. I’ve never met someone who likes being in the hospital. I can’t say I hate it because I know I need it. I want to continue living an active life, and sometimes that requires me to be “locked up on the joint.” Every time I leave the hospital I am at my peak lung function (with the exception of my last stay, which I will get into later). Over the course of the next three to four months, my lung function steadily declines. It declines until I put the brakes on it. The hospital is that high.
Look, I can’t live my life without breathing properly. Sure, I can lie down and do activities that don’t require a lot of deep breathing. But that’s not what I was created for. I was created to interact. I was created to hurt others. I was created to look CF in the face and tell him that today is not going to be the day they beat me. I make a CF plan around my life, I don’t make plans around CF. For me, CF is a being with whom I am in constant competition. I guarantee you this, I will win. I’m going to beat CF. There is no doubt in my mind. The day I was born I signed a lease, provided by God, to live my life. At some point, my lease will expire, but I guarantee that I will exceed my allotted miles.