The Battle

I've often talked about how the most challenging part of living with CF is not enduring the physical setbacks, but managing the emotional affects of living with a fatal illness. As true a statement as this is, sometimes the physical setbacks can be pretty damn difficult to manage as well!

Case in point, in the last two years of my life. 

I always hesitate to share my negative experiences with cystic fibrosis. I find myself feeling guilty for complaining about my issues; when you consider the hardships that many CF patients face, my problems are relatively minor.

Yes. My lung function has dropped twenty per cent over the last two years, but my FEV1 still sits above 75 per cent most of the time. 

Yes. I am forced to manage weekly hospital visits and doctors appointments, which often require me to miss work or put off other priorities. With that said, I have still been able to pursue a career in a demanding, fast-paced industry; something that many CF patients can only dream about.

Yes. Having to take 60 pills a day, spend hours doing treatments and therapies, and constantly deal with the ups-and-downs of CF can be difficult at times. But when I find myself getting frustrated or feeling overwhelmed, I think about those CF patients who have had to endure the pain and suffering of dealing with a double lung transplant. I think about those CF patients who have succumbed to the statistics and lost their lives to this devastating disease without having the chance to do so many of the things that most people take for granted.     

It has taken me a long time to realize that it is okay (maybe even necessary) to complain sometimes. Not only does it help you get through the difficult times by putting things into perspective and evaluating how you really feel about certain issues, but it also gives other people the opportunity to support you, which is something that I have always had a difficult time doing.

On that note, the last two years have been fucking hard. 

I've managed to accomplish a lot; from marriage to my MBA, but it has definitely come at the cost of my health. I've been hit with setback after setback, including (but not limited to) kidney failure, diabetes, blood clots and pulmonary embolism, lung infections, allergic bronchopulmonary aspergillosis, cushings syndrome (as a result of high dose prednisone), early onset osteoporosis.........okay, you get the point.

I've also experienced several mental breakdowns, which have ranged from depression to severe anxiety. Many of these episodes were related to the symptoms caused from the laundry list of medications that my body relies on to function. At times I hated myself, hated my life, and felt truly uninspired to move forward. Luckily, I have an amazing support network that pulled me through.

I've had to deal with the fear and uncertainty that come along with living with a fatal illness while trying to manage a career, pay down a mortgage, complete (and pay for) an MBA, consider starting a family, run a successful non-profit organization (shameless plug: www.fflf.ca), and devote an adequate amount of time to my friends, my family, and most importantly my wife.

Yes. The last two years have been fucking hard. 

But I am still here. I am breathing. I am beating CF.  

Yes. The last two years have been fucking hard....but so is the thought of quitting. 

My battle is a constant one, and I recognize and accept that it is only going to get harder. CF will slowly but surely continue to steal little pieces of my life each day as I grow older.  It will continue to kill me. But just as I have for the last three decades, I will fight back. 

I accept that I will eventually lose.....it is an inevitability. But I will battle. I will push back. I will fight to the end.