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 through me over the edge. I spent hours trying to come up with ideas that would make it possible to go on this dream of an outing. I thought about maybe staying the night at a hotel 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.
Every time I want to go somewhere and spend my energy I have to consider the pros and cons. Whether the fun of the outing/activity is worth winding up in the hospital for. I can not 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.
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This post first appeared on musculardystrophynews.com