PERSONAL STORY OF MUSCLE GSD
I am Irene and I was diagnosed with McArdle’s at age 11. I have been on the walking course in Wales both before and after the COVID-19 pandemic. I have learnt the great benefit of using second-wind and I have found that similar practices can help me with other issues in my life. Below is my college application story. I am very pleased to report that I got accepted!
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.
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.
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.
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.
The beautiful coast of Pembrokeshire.
McArdle’s walkers enjoying the scenery and the walking.
Happy group on McArdle’s walking course – me just getting in at left.
The beautiful coast of Pembrokeshire.
Scroll through some of my walking course photos. Click to enlarge.
An uplifting community
These people inspire me to improve my health, myself, and the world around me. Knowing that people with McArdle disease struggle with the same daily tasks I do, and seeing how they have succeeded, inspires me to work harder at school, to better my character, and to believe I can always work through challenges. They push me to try alternate routes for achieving my goals, a skill I have learned from having my condition and from mastering the process of achieving second-wind.
Such an uplifting community has taught me that the second-wind isn’t restricted to muscles, but applicable to any problem I face in life. If I breathe and rest, accepting that it is okay to take a break, I can achieve second-wind and accomplish phenomenal things.
APPLYING SECOND-WIND TO OTHER ISSUES
When I struggle in school due to mental health issues or McArdle issues, I relate the challenge to the pain of walking. I breathe, adjust, and begin again. Similar to the practices in reaching second-wind, taking a break to breathe, rest, and be in touch with my body has taught me how to manage anxiety and to succeed in school and my community, bringing me happiness and motivation.