This life is always changing. Change looks different for everyone. Mine is just a little more drastic than most. As it is with anyone with a chronic illness; especially something rare, such as mine.
Sometimes I believe the change in my activity level is the hardest part about MG. The change in my body, my physical appearance; wishing I could work out and get back to were I once was. Other days, I feel like I am missing out with friends and family because of the lack of energy and strength to do something fun with them. Then, I think about how I feel in regards to the dreams I once had. Of certain goals, I wanted to accomplish in life. Change is hard.
Then I wake up, specifically the last two days, and I cant keep my eye open to save my life. I sit in a room with blackout shades, wearing sunglasses, just so I can watch a movie to pass the time. My eyes ache with pain as they try to stay open. Think of this way, when you go to the gym and you are on your last rep. of lifting a weight. The burn, the shaking of trying to keep your arms up to achieve that last point, that’s what it feels like in my eyes. That is full muscle fatigue. That is what happens to MG’ers when they cant get the nerve signal to the muscle.
No, THIS, this is the hardest. It effects everything. It effects me being able to get ready. It effects enjoying these beautiful days we have had, that I feel I have completely missed out on.
But then I take a set back and remember a conversation I had with a lady three days ago. A conversation that reminded me that on days like today, I am STILL GROWING.
I was telling her about my workshop I am building “Resilience is Beautiful”. I was explaining that my new goal is to share my story and to help others in all aspects of life because resilience is NOT a word just associated with someone with medical complications. It is a word that builds meaning for each of us. From marriage, family, finances, work and more specifically our Faith Walk.
I know what I am going through is meant to be shared. That God and I have had NUMEROUS heart to heart conversations about what the future holds for me. Is it a clear picture? No. Does it scare me? Yes. WIll it help others? I believe it will with all my heart.
So I made the decision to step out and start working on this workshop. To put my heart and soul into building sessions that had real meaning, real value, real conversation. I pray about that points the conversations are meant to be built around. I pray about the people that will attend. I pray for the confidence in my research to build something Biblically sound. I have grown.
I have grown in my prayer life. I have grown in my understanding of what spiritual and mental health looks like. I have grown in my understanding that “yes” my life is changing but I am growing with it. God has a plan. He has been pulling at my heart, having very deep conversations with me when I am alone in a room watching a movie with blackout shades. He uses this time, even though they are VERY hard on me, because I am alone and not distracted.
I know today will get better. I know that I will be focusing what energy I have into my workshop and build something, I believe, will have value. That is my prayer.
I am human. I have feelings, struggles, pain, emotions and days that I feel I am at my lowest. But I remember that with these struggles brings moments of clarity and direction. Forcing me to reprioritize my life. And that is exactly what I am doing.
Change is Hard. Change is Growth.