An unusual comfort

The cool air brushed across my face, slipping through my hair as we set off on our first hike. I gazed out off the cliffs of Pembrokeshire, watching the waves lap the shore as the gulls soared overhead. An unusual comfort settled in my chest as we began to walk.

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A few minutes in, I felt the familiar heaviness in my legs, bleeding into the aching burn I know so well. I stopped, and so did the group. As we waited the 30 seconds, there was no questioning and no need for an explanation. Once the pain ceased, we continued on for a minute or two more, until a few others needed to stop. We all waited together, with great understanding and patience. Eventually, we achieved second-wind, allowing us to climb to the top of the peaks while enjoying the beauty of the world around us.

Feeling deeply empowered

First, I notice the muscle pain. I stop for 30 seconds to recharge 80% of the creatine phosphate and immediate ATP in my muscles. This is necessary because anaerobic glycolysis is inaccessible for people with McArdle Disease, the condition my hiking group shares. After 10-12 minutes of stopping when the pain arises and then starting after resting the muscles, my body releases glucose from the liver glycogen store. Then starts fat metabolism and aerobic glycolysis. Second-wind requires resting the muscles until they are using the energy accessible with no pain and no danger to my kidneys. Once I accomplish second-wind, I can walk for miles, feeling deeply empowered.

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On my courses people came from England, Germany, France, Ireland, the US, and Wales to hike together with others who possess this extremely rare condition. We share painful stories and experiences, as well as help one another find ways to manage our condition. Not only are our hikes important for sharing our experiences, but in the evenings we discuss our diagnoses, crazy ER stories, and even the struggle of cutting vegetables.

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Shared stories and experiences

For example, Sioned Williams, who also struggles with McArdle disease, was a talented harpist for the BBC Symphony Orchestra for many years. She shared how she learned the importance of warming up in order to perform well and safely for her muscles. Hans Meißner shared his account of being in rhabdomyolysis. Rhabdomyolysis is when a dangerous amount of myoglobin is released into the bloodstream as a result of excessive muscle breakdown. Hans suffered through this, including temporary kidney failure, for three weeks. Yet, through diligent walking, he was able to build up strength in his legs, becoming one of the fastest on the hikes in the group and able to hike seven miles up a great mountain.