Staying the Course when living with myositis

Although everyday life seems like a mad dash to the finish line honestly it’s all about staying the course and that is often easier said than done, especially for those who suffer from Myositis.

Life stops for no one when you are living and it doesn’t slow down nor does anyone award free passes when you’re diagnosed with a disability disease. You are still responsible for bills, groceries, providing for and caring for your families; if you are a single parent, it’s like double the work. We must still stay the course even when the odds are stacked against us.

Being a disabled single mother of a 25-year-old, a 20-year-old and a 15-year-old, my parenting responsibility doesn’t end. I am fortunate to have older children, unlike some of my fellow Myo-Warriors I’ve shared conversations with.

No one seems to understand the stress of living with a debilitating disease. It’s overwhelming on a daily basis. Though compassion is great, it does not compare to actual experience. Through daily pain, weakness, and extreme exhaustion and fatigue, we still must function in providing for our children’s’ needs. We must stay the course.

When the skies are gray and we are in our darkest day we must still stay the course.

Even when I worked full-time and had a steady income, with a nice check every two weeks, I had gray clouds and dark days, but I knew I could get up and go work the next day and have a steady income to rely on. I took my health and so much else for granted then.

Those gray clouds look so different to me now. It’s funny as you would think that they would be grayer and darker now that I am unemployed and my month-to-month income is uncertain at best, but they aren’t. Don’t get me wrong, they are gray and it gets pretty freaking dark and miserable when I’m going through such uncertainty, but I view them from a different perspective. Life isn’t absent those days, but they don’t last as long as before and each time I come out changed and grateful. I don’t take anything for granted anymore. When you are staying the course and stop running at a mad dash you appreciate life from a different lens.

For me, staying the course isn’t absent of prayer. In fact, prayer is my foundation. I have to stay grounded and surrounded in giving my every care, concern, and worry over to God. The sense of peace I get when I pray is indescribable. When my pain is out of control, I am too exhausted to get out of bed, my youngest child is out past curfew, and things are swirling about and are out of my control, I give it all to God; my every moan, my every tear, my every care and my all and all. That’s how I stay the course.

No matter what, we must stay the course and get through this together with my fellow Myo-Warriors. If we don’t have anyone else we have each other because no one knows our fight like we do.

Stay strong and stay the course with me, no matter if it is through religion, spirituality, exercise, stress relieving activities, or other ways you have found.

What are some ways you “Stay the Course?” Post in the comments below!





Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support

1 Comment
  1. Jerry Williams 5 years ago

    Great article @lekiha! Truly inspiring!

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