Facing the physical transitions

Transitions are a part of life from the moment we’re born. We go through puberty as teenagers and our bodies change. We move out of our parents’ place to go to university or start a new job. We get older, some of us have kids, and our perspectives change.

When living with Muscular Dystrophy we deal with many transitions as we get weaker. It’s hard, but I’ve prevailed, yes with a lot of screaming, gritting my teeth and being angry at myself and my body. It’s easy to live in silence locking it all away and just dealing with alone. I’ve learnt to be more open with my friends and families, and embracing the transitions that happen in a more positive way. You could say all of what I’ve just said applies to most people living with any form of disabilities.

For those who don’t know, The form of Muscular Dystrophy i have is a progressive muscle-wasting condition, meaning that those of us that have a progressive form of MD will continue to lose muscle strength over time and with exertion. The disease doesn’t stop or decide to take a holiday. Slowly but surely over the years, some of the actions I used to be able to do, like stepping into the shower, standing by myself with help, walking and getting dressed, become either no longer safe on my own, extremely difficult or stopped all together.

Taking a trip out to your local shop can be a reminder of the progressive nature of the disease, when your hunting for an accessible toilet or unable to lift your arm to grab a drink. All of these things to some may seem like very small things at face value but they add up over time and force you to reflect.

Each new battle. And yes, it can feel like your on the frontline fighting your own body at times. MD is scary, humbling, and frustrating at the same time. my physical life will continue to change until I can’t use any of my muscles. What does my future hold – I don’t know what scares me more the unknown or the known when it comes to MD.

Then, I snap back to reality: acceptance. I may kick and scream and tell myself I can do what my muscles physically can’t, but it doesn’t change the reality I live in. It happens to be a reality with plenty of good things — incredible hubby, a developing career, and surrounded by people who love me. I could be getting inadequate care, I could be homeless, I could be so many other things than what I am right now. I’ve already lived a full life and plan on continuing it whether or not I can (literally) put on my own socks.

Introspection has told me I internalised a lot of things and don’t ask for help for fear of being a burden. But I have to tell other people about transitions that I can see coming. I think we are wired as humans to hate admitting our faults and personal challenges, but it is required of me to break through these difficult transitions. Some of it comes out of necessity, but some of it has to come out of protecting myself for the future.

I have to swallow my pride and stop myself being as stubborn as I am and ask for help. I need to remember that communicating is key in me keeping my Independence so I can make it to the next part of the never-ending battle with Muscular Dystrophy.

While I’ve had plenty of negative physical transitions, I’ve also had plenty of positive mental ones. My writing over the years has improved as well as giving me other skills. I’m improving my interpersonal skills with the more people I talk to. I’m understanding more about others. A physical transition can be paired with a mental transition, which helps me put a positive spin on the situation.

I’m of course expecting more unforeseen transitions to happen in the future, and while I don’t hope for them, I now have a better grasp of how to get out ahead of them and protect myself mentally and physically. Transitions are a bigger part of life for me than your average person, but like everything else, I’m not planning on letting them get in my way.

Kisses K

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