A couple of weeks ago I took a wonderful trip to Asheville, NC- and completely wore myself out! I went to the Biltmore and spent the whole day there- climbing all those steps and exploring the gardens. It was beautiful, but exhausting. Then the following day, we went to several of the waterfalls in the area, which required a bit of hiking. It was definitely a struggle! My boyfriend ended up giving me a piggy-back ride a couple of times! It made me pretty weak, but I still think it was worth it.
It's so hard sometimes dealing with this disease. There are days when I am so strong I almost forget that I have congenital myasthenic syndrome! Then there are days I am so weak, I wonder if I will ever be strong again.
So, here I am trying to follow this "couch-to-5k" plan, and after that weekend I was completely unable to train! I'm thinking it may take me longer than a couple of months to reach my goal, but I still think it's possible. I probably walked about that much at the Biltmore! Plus I was going up & down tons of stairs! But that was a couple of weeks ago, and I am just now starting to feel a little stronger.
Sometimes I wish I could see inside my body, and know what is really going on in there! How exactly are these nerves & muscles supposed to work together? How do muscles recover after exercise, and why does it seem to take me so much longer to recover than people without this disorder? All of the research I have read only mentions the problem of nerve transmission to the muscle. Nothing addresses muscle recovery. If I could just get my muscles to recover faster, I could do so much more!
So, I am struggling. Sometimes I get a bit discouraged, and feel like what I want is just impossible. But I reminded myself this morning that the body is incredibly complex, and no one can really fully explain it. Some people have serious illnesses and go into complete remission, while others with the same condition continue to decline. I have heard that some people with Myasthenia Gravis go into remission, but I have only heard of that in acquired cases, not congenital cases. I'd love to be in remission! I would be unstoppable! Look out, mountains, here I come!
Life with Congenital Myasthenic Syndrome is not always easy- that's for sure! It has definitely been a rocky road at times. Just trying to figure out what was wrong with me took years. Treatment has thus far been unsuccessful. This is my story of my journey, what medications I've tried and their affects on me, and what I do to cope with this disorder. I hope to meet others with CMS and hear their stories, and maybe find ways that we can help each other out!
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