Everyone’s idea of what makes for a happy life is different. For example, some people like traveling all over the world or have a bucket list of places to go and things to do. On the other hand, some people simply want to have a good career and raise a family. When you’re disabled with a chronic illness and constantly feel ill, the little things like going to the movies or grabbing lunch with a friend become the things that add quality to your life.
A little over a year ago, a friend asked me if I could go to Harry Potter World at Universal Studios with him. Immediately, I felt a pang in my chest. I knew that the trip was a risky one and could end with me in the hospital. Not only would the excitement and overstimulation exhaust me, but the estimated two-hour drive to Los Angeles would be the sarcastic and figurative cherry-on-top that might throw me over the edge.
I spent hours trying to come up with ideas that would make it possible for me to go on this dream of an outing. I thought about maybe staying the night at a motel near the amusement park, or even renting a trailer so that I could immediately rest afterward. My mom even jokingly suggested borrowing a helicopter — haha! But, alas, the dream was out of reach.
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I have to consider the pros and cons every time I want to go somewhere and spend my energy. I must consider whether the fun of the activity is worth winding up in the hospital. I cannot tell you how defeating it feels to be staring up at the ceiling of a hospital room, wondering if I could have prevented the outcome. It’s rare that I let life get to me, but when it does, I make sure not to stay blue for too long.
These days, after living with mitochondrial myopathy for approximately 13 years, I’ve learned to be happy and thankful for the way my life is. I’ve learned, and am still learning, to love the little things in life.
When my friends ask what I’ve been up to, I’ll probably say something like, “Not much.” But the truth is I’ve probably ordered something and am waiting for it in the mail, or maybe I’ve painted my nails a fun color. Those things may seem simple and minuscule to some people, but for me, those things give me joy without wearing me out. They make me excited for the next day.
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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