Up and down, up and down. Happy moments and moments of sadness. Incredible highs and sometimes devastating lows. Good days. Bad days. Things you can control and sometimes things you can't control. That's just how life is. Moments of exuberance followed by moments of reality. Moments of feeling on top of the world to moments of wanting to crawl into a ball and make everyone and everything disappear.
When you live with a chronic illness there is a heightened awareness of the roller coaster. There is an understanding, a keen understanding, that the highs, the momentous occasions could be taken away at any point. An underlying fear that the disease, in my case cystic fibrosis, could rear its ugly head and overtake my body. An underlying concern that this might be my last "good" year. That I might not be able to achieve my goals and dreams. That I might not be able live the life that my wife and I want. But with this fear comes an appreciation for everything good in life. The big, and more importantly, the small things. The appreciation of being able to get up and go to work. The appreciation of coming home and spending time with my wife. The appreciation of a good meal, a night with friends, the ability to still be able to run and play soccer.
Unfortunately, bad things happen. They happen all the time for no reason. And when you live with a chronic illness they seem to happen more frequently, often in advance of something that you've been looking to for a long time. Yes, the natural response is to fight. But it's also natural to have moments of uncertainty and fear. And in those moments I often want to crawl up into a ball and hide under the covers until whatever is wrong goes away. Until the IV is out of my arm; until I'm out of the hospital; until my lung function is back to baseline; until the daily grind of disease management can be lessened. And every now and then I wish I could just be normal, whatever that means. Days when I don't have to do breathing treatments, chest physical therapy, take pills and stab myself with insulin. Days when I could wake up, shower and go to work. Days when I could make a decision without it having an impact on my health. Every now and then I wonder why I have to deal with all this crap. Why I have this in my life.
The reality is that health-wise the past 18 months were not the easiest. My lung function dipped 20 percent below my baseline. Sputum cultures showed new bacteria. I was hospitalized. I also went through two extended courses of IVs, each close to a month long, over the past 6 months. However, amidst all the struggles, the last 18 months of my life has been amazing. I married my best friend surrounded by close to 250 of our closest friends and family. I spent three amazing weeks in New Zealand celebrating the beginning of a great life with my wife. Fortunately I was able to once again bounce back from the infections. Fortunately this was not the time CF was going to take its toll. I was able to get back to my life. To going to work. To running. To spending time with my friends. To doing everything that I love.
And every now and then someone asks me if I wish I didn't have cystic fibrosis. Or if I ever wonder why I have to deal with all the bad? Lately, I've often flipped that question back on them. Well, yes sometimes life does suck, but life is also extraordinary. And yes, "Why me?" applies to both the negative and the positive. Why has the past year also been the best of my life? Why did I get to marry my best friend? Why do I get to live the life I chose? Why have I been so fortunate to experience the best of what life has to offer. Because if you ask "why me" in the bad situations than you should also ask that same question when something good happens.
And that's life. It's a roller coaster. Ups and downs; highs and lows. And I personally wouldn't trade the bad, the sad, the fight or the grind for anything. I wouldn't make life easier. I wouldn't change a thing. Because that's what makes life interesting. That's what makes life exciting. That's what makes life worth living.
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