Even when life gets hard, ‘you still have to get up in the morning’

This is a letter to all those who read and appreciate the work of Bionews, the parent company of this website. Like you, I am a member of the rare disease community, and writing a column about myasthenia gravis (MG) has lightened some of the darker moments of my journey. It has been too long since my last column, so I’d like to share what I’ve been through and the lesson I learned about the necessity of pushing through rough times.

In mid-March, I lost a legal struggle with a landlord, which meant that after 18 happy years, I needed a place to live. Stress is a trigger for MG, and I work diligently to keep it as low as possible. That goal quickly unraveled.

Moving day brought physical, emotional, and financial stress. First, my belongings were brought to the wrong address. I laugh when I imagine the homeowners’ reactions. Did they wonder if they’d accidentally sold their home? That was the only humorous part of the day.

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When the movers finally unloaded my belongings at the correct address, we learned they had forgotten a washing machine, a 9-by-5-foot rug, a home safe, and 15 boxes. I scrambled to find people willing to help, offering to pay any wage. We got it done.

I knew the physical and emotional stress was high, and my MG reacted just as I expected. I spent days in bed, unable to get up except when essential.

A long time ago, I learned never to say, “Well, at least things can’t get worse.” They can. As I struggled against fatigue, I received notice that my health insurance would cease on May 1. I dragged myself out of bed, got on the internet, and solved the problem. I was able to negotiate a plan that began April 29, but the stress of accomplishing this was high. I ended up back in bed.

Reflecting on Ma’s wisdom

Fortunately, my life has settled down. My new place is nearer to friends, family, and shopping. It’s almost as if there was a reason behind all the chaos. I want to honor the promise to share a lesson these weeks taught me.

My mother has been gone eight years, but throughout these tough days, I kept hearing her voice. Whenever something negative or hurtful happened, Ma’s advice was always the same: “You still have to get up in the morning.”

I didn’t like it when she would say this. But I’ve since learned that Ma was wise. Life with or without a rare disease is difficult. Not everyone is in a hurry to accommodate a disability. Our legal system moves slowly. Our healthcare system is broken and requires patience, diligence, and the ability to listen to the worst music while on hold.

Most importantly, life with a rare disease means that even when you’re down and don’t think you can go on, you can’t give up. It is possible to navigate any mess life throws your way. You just need to get out of bed in the morning. At the start of each day, believe that today will be the day that everything works out. When the day ends and your goals seem even further away, go to bed knowing that tomorrow will be the day everything works out. Set your alarm to a “get out of bed” time. When the alarm rings, get out of bed. Start again.

Things will right themselves. This will happen because you kept getting out of bed, even when the thought of another day was unbearable. Keep giving all you have. When things work out, think of my mom. She’d be flattered. I’ll be honored.

I’m back. Keep sending me your thoughts.

Note: Myasthenia Gravis 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 other 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 Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.