Mental Health and Muscular Dystrophy-It takes a toll

Hello, welcome back. This week I felt like I should talk about mental health and Muscular Dystrophy. I feel like our mental health is something we don't talk a lot about, so I wanted to share how Muscular Dystrophy has affected my mental health because honestly speaking there have been some very dark times. I talk a lot about how MD affects me physically, but haven't shared a whole lot on the toll it has taken on my mental health over my lifetime. I've talked here and there about how it's hard to live daily with a physical disability. Something that you know you can't take medicine for and make it better like you would a headache, or a body ache. It NEVER GOES AWAY. It's there from the time you open your eyes in the morning, to the time you close your eyes to to go sleep at night. Obviously, it's physically grueling, and just so daunting, but you may not realize how much a physical disability can affect your mental health. 

My rock

My readers who are runners can probably relate with this.....I've been told by some doctor's that getting up each day and going about my day in my weakened condition, is like running a marathon everyday. So, if you've run a marathon (which I have, well sort of haha) you know how much mental preparation goes into those months of training. That is kind of what it's like for me everyday. You have to constantly mentally psych yourself up. Even something as simple as getting up to use the restroom, or getting a glass of water, or switching laundry loads out requires that kind of mental work up to keep things going. This is because walking with muscle weakness is very laborious. It takes concentration on every step you take because you don't want to trip, and it takes extreme physical effort. I know I could use a wheelchair around my house, but I feel like for me, personally speaking, this is not what I am choosing at this time. There is no right or wrong choice for those of us with MD who still are fortunate enough to have the ability to walk. Some choose to use a wheelchair some of the time to save strength, or just because they can't physically make it through their day safely without some type of assistive device. I have definitely been there at times after an injury from falling, surgery or illness that has left me especially weak, but not full time. I've always been able to go back to walking full time. 

After finishing the Chicago Marathon in 2019

Before the stem cell treatments, I was probably the closest I've ever been in my life to making the decision to use a wheelchair most of the time. I don't know if I ever shared that with anyone at the time. I was going through the scenario's in my mind of how things would change for me. What would have to be changed at home if I were to use a wheelchair some of the time to be able to make it through my day? We had also looked into, and almost installed a lift on the back of my car, so I could take my scooter independently and use it wherever I went. It was taking a toll on my mental health. That is a huge change, and for me it's one I had been dreading for many many years because I fear I will lose the independence I've worked so hard for. I always thought to myself, my legs will have to collapse under me to make that decision for me. I have wanted to make the transition to using a wheelchair so many times, but I would always have this little voice that would say, keep going, give it another day. Again, the fact that I can still choose that as someone living with MD is something to be very grateful for. Many don't have that choice. 

I stay pretty quiet when it comes to fully expressing my sadness that I sometimes feel when I'm just so mentally tired. I do that because unless you have lived your whole life with a daily physical battle, you probably couldn't understand the same sadness I feel. In the past year I've been so fortunate to make some really great connections with some who share my same diagnosis, or very similar. It's been life changing for my mental health.  Sometimes I would just think, I don't want to do this anymore, I can't do this anymore, I just can't!  I have to dig deep everyday to make it through, and sometimes I just don't want to do it! Sometimes, I feel defeated before I even begin. There have been times in my life of depression, sometimes periods of years, and I have thought many times, I just don't want to be alive anymore if this is what I have to continue to face everyday. That is just the truth, and disability or not, I'm sure some who are reading this have been there at some point in their lives for different reasons. 

The stem cell treatments have certainly also given me a mental health boost. They give me hope that I can maybe get some relief, even just a tiny amount of relief is so noticeable, and appreciated. It makes it so much easier to wake up and face the day with humble courage when you know you've got something in your body that could maybe make things a little easier. If you are living with Muscular Dystrophy, please know you are not alone in your sadness, anger, frustration or feelings of hopelessness. Also, please know that you have a fighting spirit that lives in you that will get your through your toughest times. You are meant to be here for a reason. Don't give up! Together we fight, physically and mentally!