Addicted to…

Hello and welcome to another week at Humbly Courageous! Hope you’ve had something that made you smile this week. My smiles this week came from a picture my son Jack drew in art class and knowing my college boy is coming home this weekend for a visit 😊 

I have a confession to make. I have an addiction, and it’s just keeps getting stronger. I’m addicted to….my routine. Sorry, maybe that was a disappointing build up, but it’s true! My addiction to routine really started growing when I had my boys. I guess you could say I’ve never been a super spontaneous person. I like to feel in control too much for that! Before having my first child I was, of course, reading all the books on what to do and how to do it, which if you have a child you know 99% of that goes out the window when they are born, and you end up just doing what works for you. Still, I wanted to feel prepared, and I read over and over that having a routine for your child makes them feel safe and is a good thing for them, while also making your life a whole lot more manageable. So, that’s where I really got my first taste of how helpful having a routine can also be to managing my disability. 

💚my home inside and out!

Of course, the place I feel the safest is in my home. I know the steps I take, where the floor sticks up a little, how many steps from the stove to the sink, where the walls are that I use to brace myself and propel myself as I’m walking through the house, which chairs I can easily get in and out of etc. The older I get, and the more unsteady I become, the more I crave my routine because it’s comforting in a time that feels very unpredictable. It’s scary to know your muscles are failing you, and to feel weakness slowly keep creeping in. To keep from panicking, you just take things day by day. Having a routine helps to keep the fear at bay, so you aren’t ruled by it. 

However, I’m also well aware that if I get too stuck in a routine, I won’t be able to continue to grow, and experience new things that may further me along on my purpose journey. I’ve been better at voicing my needs to my friends and family, and just being very honest about where I’m at in my life with my disease. I can’t do certain things I used to, or in the same way. I think that’s sometimes hard for people to accept. It’s hard for me to admit those things out loud too. Really hard. Sometimes, I feel like they think I’m quitting. I’m not, not by choice at least. It’s heartbreaking, but it’s life. Life can be hard and disappointing in so many ways. 

Life is certainly not predictable for anyone. I admire those who can be spontaneous. Some people crave that and some crave a routine and structure. If you are one way or the other, it can sometimes be hard to understand the other side. Another reason routine works so well for me is so I can mentally prepare for how I will physically handle certain situations, especially outside of my house. For me, I have to kind of map out in my mind how I will tackle even the smallest of things when going somewhere. Is there a curb, a railing, stairs to get into the place, a dog that may jump on me and knock me down (tapping me with a feather could knock me down!) a counter to lean on or catch my balance if I stumble?… thoughts like that. It is just not possible for me to go anywhere and not have to think about those things. Having a disability really hinders that carefree lifestyle! Some could view my addiction to routine as boring. I think it’s really helped me to understand who I am and identify and respect my needs better, which helps me thrive and get through each and every day. It’s ok to like certain aspects of what makes you tick, no matter the reasoning behind it. Becoming comfortable in your own skin has to be the the best part of aging. 

Since September is Muscular Dystrophy awareness month, and part of the reason I write this blog is to help educate and bring awareness, I thought I’d share a fact at the end of each blog post this month, that may help you to understand the specific type of MD that I live with (COL6A3 Bethlem myopathy) and what I have always faced and continue to face, likely for the remainder of my life. Being new, not to having a disability, but to this diagnosis, I’m honestly still learning about it myself. I plan to continue on with my routine and humble courage as my trusty sidekicks. 💚

What causes Bethlem myopathy?
Bethlem myopathy is caused by a change in one of the collagen VI genes (which are called COL6A1, COL6A2 and COL6A3). This results in either the production of abnormal collagen VI protein or reduced levels of collagen VI protein in the body. Collagen is the main protein of connective (supporting) tissue in the body and provides support form  the muscle cells. The muscle cells of people with Bethlem myopathy are more sensitive to cell death, and there might be a change in the energy supplying parts of the cells called mitochondria.