Good Morning! More writings from the “Lost Writings of OC.” I thought I would share a little bit about my Myasthenia Gravis (MG) experience with you today. I originally wrote this in 2024 and updated it several weeks ago. As I share this with you, my MG is getting much worse.
Today’s a new day! Myasthenia Gravis (MG) is an autoimmune disease that causes muscle weakness. But what exactly does muscle weakness feel like? To understand more, let me walk you through a typical day with MG.
For me it feels like I’ve run out power. In general, I feel it’s a huge effort to move when I’m very weak. When my legs are weak, they feel heavy and unsteady. I feel like I cannot move them or trust them to hold me up. The weaker I get, the closer and closer my steps get to each other, until I have to stop and lean against something or just sit down.
Also, I get pain in my hip flexors – basically my butt. It’s the same kind of pain you get from overdoing a workout: an achy soreness that feels like you have overused the muscles. These days, I deal with hip pain on a constant basis.
When my shoulders are weak, which is most of the time lately, I feel like I just cannot lift my arms. Like there are heavy weights holding them down.
My neck continues to get weaker. I just cannot hold my head up. It falls to the side or down, or I have to prop it up with my hand on my chin and my elbow on a table, or with a U-shaped neck pillow and a high-backed chair. As my neck weakens, I develop achy pain in my upper back from trying to hold my head up. I sometimes get a nauseating gagging sensation from my throat collapsing.
Eating with MG can be a challenge from having to take breaks while eating, to choking on solids and fluids. Sitting down to eat or drink is a major undertaking. I also start to slur my speech, and I get short of breath from minor exertion, or sometimes just sitting still.
I always have muscle weakness, but it gets more severe with heat, exertion, lack of sleep, infections, or other stressors. Summertime can be very challenging. Extreme cold is not my friend either.
Based on my weakened lung muscles, I am unable to take deep breaths. This causes issues on so many different levels. These days, every breath is a struggle.
I have to stay on top of my medications for the Myasthenia Gravis. I have to take one of those medications four times a day. Oh, I better not miss those dosages or things can go down hill pretty quickly.
I try to dress in cool fabrics and wear layers in winter. And I try to protect myself from sickness by keeping my vaccines up to date, wearing a mask when needed , and using hand sanitizer or washing my hands frequently when I am out of the house. I tend to fist bump and avoid shaking hands or hugging.
You know how much I love to walk, but that is getting harder these days. I have added a walking stick to help with my balance. This is a far cry from my marathon days
My medical team continuously tells me I am a one in two billion case with all of the multiple diagnosis. With Myasthenia Gravis, I fall into a small group of people being diagnosed with MG after having their thymus removed. My cancerous thymus was removed in 2003, but I was not diagnosed with MG until 2009. I will not go into what the thymus does, but feel free to research on your own.
How friends loved ones can help
One thing my friends and family do for me that’s immensely helpful is helping to educate themselves on Myasthenia Gravis so they can explain it to others and better understand my daily challenges.
I only have a few people besides my bride, who truly know me and my MG that well, but they are lifesavers. They’re also the ones I’ll talk candidly to when my MG gets me down. I cannot be relentlessly cheerful all the time, but I try.
I hope this gives you a better understanding of what Myasthenia Gravis looks like and how it affects my life on a daily basis. Each day is a struggle, but I continue to push forward and look at all the positives in my life. I encourage you to do the same. Go have a great day! ~OC
Dear God, Sometimes the pain is so great, I cannot think beyond my current struggle. On hard days, please ease my pain and help me focus on Your goodness one day, one hour, one moment at a time. Let Your overwhelming peace wash over me and remind me Your mercies are new every morning (Lamentations 3:22-23). There are days when I beg you to take the pain away. Days I just don’t have the strength. In those desperate times, I ask for Your unending strength to sustain me. I cannot do it alone, but with You all things are possible (Matthew 19:26). Amen
The Blessed Overcomer 