Once being diagnosed with a rare disease, it is easy to regress into your shell and hide from the outside world, to give up and let the disease control your life.
Clichés like “everything happens for a reason” seem hard to believe when you are living in pain every day. After my diagnosis of Pompe disease, I did not think that I would be able to do what I loved most, including surfing, running, mountain biking, and paddling. These are my passions.
With a lot of experimentation, I realized that adrenaline and the stress hormone cortisol are huge factors in my body unable to break down carbohydrates properly. So even if I felt calm and relaxed before an event, as soon as the start gun fired, my adrenaline would spike, or sometimes later during the race I would suffer the energy lapses. I would inevitably experience a bad episode of what I refer to as “disease pains,” which is when my body starts tearing apart my muscles to use as fuel as it cannot break down glycogen.
I am still figuring out ways to gain control of the spikes I have before a race, but I know I will find a way.
Read more about the risk factors of Pompe disease
Despite these monumental challenges, I still find myself entering events that I knew would be hard like a half-ironman, where running is almost impossible for me. Sometimes I can get through a swim and a ride in a half-Ironman competition with little pain but as soon as my feet hit the ground, the disease pain kicks in. I will run kilometers with my dogs for weeks before the event with very few issues but as soon as I am on the start line, something just takes over and the pain is excruciating.
I started experimenting with cannabidiol (CBD) oil, which is an oil derived from the cannabis plant. I would take some of this oil in the evenings before bed and a microdose with it before an event to help block my cortisol levels. It has shown signs of helping and I find that I can now run a little longer before my disease pain kicks in.
I am still researching ways to limit or gain control of the cortisol levels and keep them to an absolute low during the events I participate in. I will keep you posted on my findings.
Someone asked me why do I keep doing this to myself, why do I enter events that I know will take a toll on my body? My answer was simple: Hope!
If I didn’t have hope that something will work, that something will change, hope that I could run a little further next time, or hope that I would be in less pain, I would never know and experience the possibilities all around me.
So, never give up hope. Technology and data collection are so much more sophisticated than they used to be; we are discovering new ways to fight our disease every day. Never give up hope . . . it’s the one thing no one can ever take away from you. So don’t let the disease define you; don’t let it depict your future.