A couple weeks ago, a blogger with mitochondrial myopathy posted an interesting piece of advice in her Instagram story: “Instead of telling disabled kids ‘You can do anything you want if you put your mind to it,’ I think we should tell them, ‘The things you are capable of doing, matter.'” That statement rang true for me these past few weeks.
I’ve gotten myself into a bit of a predicament. Much like an alcoholic trying to become sober, I’ve slipped back into an old routine of neglecting bodily limitations, inevitably resulting in fatigue relapse. Little things like drawing for too long, staying up late at night to watch YouTube, and refusing rest after my session with my home school teacher have all added up over time. The temptation to do the things my heart desires is very strong. It’s all too easy to get caught in one decision and to ignore the consequences that will arise later.
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My mom and I both know that I am responsible for getting tangled in this web and that I am the only one who can get myself out of it. My parents are some of the best I know. Little did they know that I would develop Mito, but that never stopped them from teaching me valuable life lessons. Never was I given a pass on bad behavior because I was “special” or “different” than other kids, nor did they shower me with gifts to show love and affection. However, they still managed to provide me with a very full and happy life. They’ve instilled in me the knowledge that although I have obstacles, there’s always a way to have fun adventures, even if that adventure is to go and get some frozen yogurt.
When I get into ruts of overexertion, it takes some time to rewire my thinking and break the bad habits. It’s time to take more precautions and better prioritize my energy. This has been a big goal for the last couple of days as I try to dig my way out of this relapse.
I will be 22 in May. I have always been held responsible for how I choose to spend my energy, but I feel more pressure to take care of myself now that I am more independent. As I go about getting rid of old habits and starting better ones, I plan to keep in mind that while I can’t do everything, I can still do things that make me happy.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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