With any progressive muscle disorder you’re in a constant state of transition whether you realize it or not. It all depends on the time frame. For me, I need to look back a year or more to see that yes, in fact, my disorder has progressed. For others the timeline might be shorter. Here are five things I’ve learned about transition and progressive weakness.
1. I adjust without even knowing it.
It’s only when I am really paying attention to how I am moving or doing something that I might realize, “Hey! I am doing this differently than I was a year ago.” For example, I noticed recently that when I put on a shirt I tend to gravitate towards my desk so that I can use my elbows to get the shirt up over my head. I rarely did this before. I can still put a shirt on without using a desk but for whatever reason I must have subconsciously realized it was easier.
2. Transition gives me time to psychologically adjust.
Unlike someone who is perfectly healthy one day and paralyzed the next, I have had the luxury of a very slow transition. Along with the physical adjustments, my brain seems to change as well so that I maintain the same positive attitude despite the physical changes. It’s as if I am given time to mentally accept a change, often before I realize a physical change has happened.
3. A slow transition means time for planning.
I know that my needs in ten years will probably be different than my needs now when it comes to my physical surroundings, vehicle, assistance, etc. Thankfully I can plan for these things both mentally and financially. If I know I will need a different vehicle setup in 10 years, I can save for it now. I can also keep my eyes out for new technologies that come up that I might need in the future even if I don’t need them now.
4. I pick up new hobbies.
When I wasn’t able to play regular tennis anymore I gave up on tennis for many years. During that time I discovered new things like painting, creating song mash-ups, new books, and other new projects that I might not have discovered if I was constantly playing tennis. I learned that there are always new things out there to get excited about. Eventually I started playing wheelchair tennis which was yet another whole new adventure.
5. The people around me adjust right along with me.
For the most part, the people in my circle of family and friends seem to adjust with my change in needs as well. There’s nothing shocking about my disorder to them because change happens very slowly. In this sense I don’t think they feel sorry for me and they are simply along for the ride as well.
Overall I am grateful that the progression of my disorder is very slow. Being able to reflect on this as a positive is a something I think only happened after I was able to fully accept having muscular dystrophy. Is there anything you’ve learned about the transition in your disorder that you see as a positive?