When you have come to survive a few brushes with death, nothing becomes more evident than the value of your time. To most people, the 24 hours in a day just are not enough. Chronically ill people are forced to be both full-time patients and full-time functioning human beings, meaning 24 hours are definitely not enough. You inevitably come to realize that managing your time and adapting your lifestyle might be the only way to keep your sanity.
After my myasthenia gravis diagnosis, a sense of futility arose in me. I was constantly tired and did not see a reason to attempt to do things, as I felt I probably would be too weak to execute the action I initiated. So, I did nothing. I just felt sorry for myself and allowed the disease to steal my physical strength and will to live. This did not last very long, as it’s obviously not a healthy way to approach life over the long-term, regardless of the circumstances. It was a phase. I needed to accept my new diagnosis and move forward.
I started small. I had to start small. Since I need to take a Mestinon (pyridostigmine) tablet every three hours, I became increasingly more aware of time. Initially, it was to ensure that I didn’t accidentally skip a dose. Later , medication time turned into an external motivator, a challenge of sorts, to try to finish a certain amount of tasks within the three-hour limit before taking my next tablet. Sometimes the only task I needed to complete would be to take a nap. No task is too small when you are a beginner at something. Everyone has to start somewhere.
Falling ill forced me to experience what it felt like to be an adult with plentiful life experience, but stuck on a beginner level of life. I was new to this life of chronic illness. I was new to all the cons this life presented, like people’s unwanted reactions and the loneliness of being bedbound for days on end. I was so untried in this new life that I was unable to see all the beauty that accompanied the sorrow.
At first, I did not notice the family members who purposefully slowed down their walking rate so I could keep up. I was too inexperienced in this new life to notice every small attempt anyone would make to accommodate me or to see when friends would go above and beyond to help. I was so focused on the negative of my new reality, that I had forgotten that positives could arise from the most unlikely of circumstances.
The longer I live with myasthenia gravis, the more I realize how precious my time on earth is. This realization also makes me aware of the beauty of giving my time to someone else without expecting anything in return. I learned this from the ones who gave their time to me when I was not physically able to give them anything in return. Do not forget to thank people for their time, and remember to value yours. It’s a valuable life skill.
Never stop fighting. Life is beautiful.
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