Tuesday, June 21, 2011

Day 253 - June is Myasthenia Gravis Awareness Month

Photo Credit: www.myasthenia.org

To describe myself as an active person is an understatement. When I was in high school, I played five different sports. In college, I maintained an active lifestyle. In 2001, I hiked and camped in Colorado, Utah, California, Washington, Canada and Alaska during a three month road trip. In 2005 I completed my first 10K and in 2007 my first half marathon. In early 2010, I was in excellent shape after completing Jillian Michael's 30 Day Shred three months in a row.

But beginning in October of 2010, I was experiencing significant muscle fatigue and could no longer run, or even walk my dog, without my legs giving out. Lifting my arms to wash my hair and put on makeup had become a chore. Even driving was often difficult because my eyes wouldn't quite focus. I chalked it up to stress due to my job and my dad recently passing, but I finally realized that something wasn't quite right with my body.

In March of 2011, I was diagnosed with Myasthenia Gravis.

Myasthenia Gravis comes from the Greek and Latin words meaning "grave muscular weakness." The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups. In layman terms - my muscles aren't receiving the message to contract. Without that message being sent, there is no ability to create the strength needed for muscles to work. So when your leg muscles don't contract, you tend to fall over because they aren't "flexing". You also tend to experience double vision and some (thankfully, not me) even experience serious problems with breathing and swallowing.

Why am I telling you this?

1. Most people, including myself, have never heard of Myasthenia Gravis. Awareness. Understanding. This is a slightly selfish request but the difficulty with this disease is that most people look perfectly fine (other than randomly falling down or having to rest a lot during walks). When you don't look sick, people question whether you are truly not feeling well. I was recently on medical leave from work for 3 months, and one of my colleagues questioned whether I really was sick because I posted on Facebook that I was drinking a margarita (note to self: really think about what you post on Facebook). The details behind the difficulty walking to the restaurant in order to have that margarita aren't laid out for her. I guess her definition of "sick" is different from what my doctor advised.

2. By not talking about it, the disease has more control over my life. It's very easy to become defined by a diagnosis. Discussions and thoughts about activities you can't do, medicines you can't take and worries about what people think can easily take hold of your daily thoughts. Keeping it a secret also seems to imply a sense of shame - like I did something to deserve this diagnosis. So I have two options: 1) sit in my house, feel sorry for myself and repeat the phrase "poor me" over and over, or 2) find the best doctors to work with to provide the best quality of life possible, learn to better accommodate my physical and emotional difficulties with the disease, and make the most of my life. Some days the first option is definitely the easy way out but I'm trying to make most of my days align with the second. I still have a long ways to go but I will get there.

3. I am learning to ask for help. At this point, my body can't keep up with what my brain is asking it to do - both literally and figuratively. There are many days when I want to accomplish something that involves physical activity but frankly just can't. Since my level of activity affects the way I feel everyday, more does not ever really mean better at this point. Often that means I need to rely on someone else to help me - not something my stubbornly independent self has an easy time doing. But it's something I'm working on.

4. A blessing in disguise? A year ago I was working ridiculous amounts of hours at a job I hated and had very little personal time scheduled for myself. I don't think I had even given myself time to figure out what was important in my life. Although I was physically in good shape, I was still living an unhealthy life in terms of balance, anxiety and stress. Today I am in a much better place - even after my diagnosis. I transferred groups at work and I work with people who are extremely supportive of each other. And even though my job is still very demanding, I am learning to create boundaries as far as hours worked and how emotionally involved I become in the process. My time off has helped me realize that the world doesn't end when one thing on my to-do list doesn't get done. I have a different perspective about what is good for me and my future health. Sadly, I'm not sure I would have ever figured this out if I hadn't received this diagnosis. So in a way I am thankful.

My advice to my 20-something year-old self: 
* Don't wait for something serious to occur before you make those much needed changes in your life. 
* Set aside the "should's" and begin to consider what really works for you - don't let someone else define it for you. 
* Take a step back (or even a step out) of your current situation to gain some perspective. 
* Make the investment in yourself now.

What advice would you give your 20-something year-old self? Take the time to really think about it and then leave your comment.

To learn more about Myasthenia Gravis, please visit the Myasthenia Gravis Foundation of America.

Stay tuned,


Lindy Mint said... Best Blogger Tips

It is so true that hard things are often blessings in disguise.  I am encouraged by your bravery.  Thanks for your willingness to share your story.

60kproject said... Best Blogger Tips

Thanks so much for your comment. This was a tough post to write and share with the world, but I feel good about it.

This Is A Do-Follow Blog

Related Posts Plugin for WordPress, Blogger...