Being a healthy able-bodied human being must be nice. Not having to worry about taking medications or planning out your day based on your energy levels. Not having to wonder if your next joyful jaunt will be ruined by nausea or heart palpitations. That sounds like bliss.
Many people who are chronically ill are unable to have jobs because, for us, living is a full-time job. It certainly isn’t easy trying to keep up with a body that is constantly throwing one symptom after another at you. At times it can feel like I’m playing whack-a-mole. Once you solve one problem, another seems to show up almost instantly.
On occasion, I get into a rebellious funk where I’d rather do anything other than take care of my body. I’ll find myself twiddling on my phone past my bedtime. I’ll neglect to wash my face in the mornings. Now all of these things may sound small to you, but they can greatly affect my finite amount of energy.
Before my onset of mitochondrial myopathy, I was a very fit child. Hula dancing, jumping rope, and playing badminton were part of my daily routine. The urge to participate in that same level of physical activity doesn’t disappear into thin air. We tend to get caught up in the day-to-day of living and forget about the bigger picture. I often feel guilty for not conserving my strength for the things that really matter, like going out with my boyfriend. Instead, I choose to spend it on something small and unimportant.
This might sound a little dramatic, but these constraints can feel like chains that strangle me. I’m always fighting to get my way. Maybe if I keep fighting a miracle will happen, and I can be free of these limitations. All my heart desires to do is sit in a chaise lounge under the trees in my beautiful backyard and draw.
My illness has little effect on my overall happiness. Yet, times like these can deflate that happy bubble. I realize that I’m not alone when I get in these moods. Every now and then we wish for a different life rather than the one they’re stuck with. It’s human nature. Right? To dream about what you don’t have?
A doctor of my mother’s once told her that the sooner you accept the situation, the better. He was right. There’s a Jeremy Binns quote that I love: “What messes us up most in life is the image in our head of how it’s supposed to be.” Every time I read this, I count my blessings. Why waste my time dwelling on the small inconveniences? I am the only thing standing in the way of my freedom. The solution is acceptance and surrender.
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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