An Update to Megan Fernsler’s Story

Guest post by Advocates Councilmember Megan Fernsler

I’m glad to be home with my children. As I’m just returning from my first post-Clostridium difficile infection (CDI) (and no children) vacation, I find myself amazed that I was able to accomplish and enjoy things I never thought would be possible with my post-CDI body.

These past two weeks have challenged me. I experienced physical, mental and emotional challenges while away. All three of these challenges are part of life after CDI. CDI creates never-ceasing fears in our daily lives and is physically damaging our bodies. Emotionally, life after CDI is at times, gloomy. As a result of these fears and physical changes, one simply does not survive CDI and remain unchanged. Our bodies are weaker, our minds: often fraught with worry.

My vacation started out as simply a request from my best friend, cohort and fellow trouble maker, Dave, to teach him how to kayak. Kayaking was a sport that I wholeheartedly enjoyed until CDI. Bathrooms are not readily available on rivers, thus kayaking was permanently put on the “do not fly” list. At the same time, he also surprised me with tickets to see a favorite band of mine called Mumford and Sons, who were playing in New York. Thus our grand adventure began.

After two “lessons,” Dave decided that he was ready for the “big time.” “Big time” turned out to be a seven-day kayak trip on the Schuylkill River, known as the Schuylkill River Sojourn. His gift to me for his lessons was to join him and 115 other paddlers on the trip. I reluctantly agreed. Being my best friend, he is fully aware of my two-year battle with CDI and my CDI based “paranoia.” Our trip started at Schuylkill Haven and seven days later ended at Boat House Row in Philadelphia.

Each night’s accommodations were spent in tents, sleeping on the ground with nothing other than hand sanitizer and portable bathrooms as comfort facilities. Enter my mental challenge. CDI may give some of us germ-a-phobia (please note heavy sarcasm here). I found myself needing to breathe deeply (through my mouth) upon each use. Thankfully, they were dedicated to only the other 114 people on the trip who were quite respectful. Between the facilities and hand sanitation, I was crawling in my own skin. On occasions where running water and modern facilities were available, I was literally a happy camper.

Each day we paddled an average of eighteen miles. Those miles were broken up by water/snack stops and lunch. Each day I was physically exhausted and very sore. During my infection, my body was so starved, it began to attack my muscles for energy. As a result, I physically lost muscle mass and strength. This trip physically pushed my body to its limits. Every evening I got off the river and ate and ate. Eating at non-planned events is also difficult post-CDI. Not knowing what was going to be available at each meal proved to be a test in itself. “What can I eat without getting sick?” is the phrase that pays! The kayakers on this trip were the granola, non-GMO, raw-food types. Score!

In the end, I did it. Let me say that again, I DID IT! Even with an evening of being sick from unexpected dairy, I finished the trip. Let me just say that my rational fear of portable bathrooms is slightly better, but not gone.

Thirty-six hours later, I left for the second part of my vacation. Remember those tickets I mentioned? They resulted in a full-fledged trip to New England. Our first stop was in New York’s beautiful Saratoga Springs for the concert. Yep, you guessed it, more portable bathrooms. Portable bathrooms at a concert are tough for anyone on a good day. A quick trip to a public restroom at Target was the solution. Yes, I have fears of using those as well. However, when having to choose between the two, the public restroom was a no brainer. The concert was great! The next day I spent over eight hours in a car traveling from New York to Maine. Long distance travel in a car is not gastrically easy for us. A quick visit to Ben and Jerry’s Factory helped to make the day sweeter. I highly recommend their lactose-free ice cream. It’s very yummy and consequence free!

Once in Maine, I traveled to Acadia National Park on Mount Desert Island. My first day there I hiked 3.5 miles around Jordan’s pond, the loop at Cadillac Mountain (1,528 feet above sea level) and Great Head Loop. Great Head Loop was not just a hike; bouldering (a form of rock climbing) is a part of it. That was scary and physically tough for me (not to mention mentally) I wanted to quit because I was hot and exhausted. By the end of the day, I had hiked over ten miles. Something I had never imagined. Heck, I never imagined I would end up seeing Vermont, New Hampshire, and Maine! But, I did it. Let me say that again, I DID IT!

The last two days of my trip concluded with a drive through Massachusetts, Connecticut, and Rhode Island. I find myself in awe that I have gotten to see and experience some of what these wonderful states have to offer. I never imagined that after CDI, I would be healthy enough to paddle 112 miles, hike over 10 miles in one day and go bouldering at 145 feet above sea level with rocky cliffs just three feet away. Emotionally, my trip has changed my post-CDI way of thinking. I was afraid to try to do the things I loved for fear that I would get sick. It taught me that life should not stop after CDI. While the fear it instills in us may never leave us, we should never again give CDI the power to stop us from living.

My CDI experience made me realize that life is not about how many things you own or how much money you have. It’s about challenging yourself and believing that you can do it. Believing in myself would have helped me to live and not just to survive.