Sometimes I Push Past My Line in the Sand, and It’s a Good Thing

Shawna Barnes avatar

by Shawna Barnes |

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I want to do everything! Especially after a period of time when I’ve not felt well enough to do anything. So when the stars seem to align and I’m feeling good, I do all the things, often to my own detriment. I’ll find the line of what I can do and plow right past it, necessitating days of recovery and nothingness. Anyone else?

What is this line I speak of? It’s the line in the imaginary sand that we all have, the benchmark for “I overdid it.” For those like me with myasthenia gravis (MG), something as simple as brushing our teeth or taking a shower can be the activity that has us crossing the line.

So what to do about it? Sit on our derrieres and reduce our lives to sedentary nothingness? I think not. I choose to find the line and get as close as I can, and maybe even stretch my toes over it — and sometimes I drive right over it and take three days of rest to recuperate.

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After getting sick with COVID-19 in January, my overall health was affected. My stamina for daily activities became nonexistent. To rebuild that stamina, boundaries and limits must be pushed.

My MG has not been well managed until recently. Regular IVIG infusions and an amazing care team have me feeling better and stronger. However, I take into account a certain level of chronic illness stamina when I push my boundaries. For example, I often self-assess to determine if my arm weakness is due to generalized MG weakness or because I felt really good and decided to paint the living room the day before.

The key to pushing boundaries, finding the proverbial line, and safely improving my wellness has been my ability to self-assess. It helps that I have an amazingly supportive partner who also happens to be a personal trainer. He helps me identify when I am pushing too hard and when I’m not pushing hard enough.

These are some questions I ask myself when deciding how far, even if it’s a good day, to push that line.

How is my breathing? Am I able to get good, deep breaths? If not, why? Does it feel lung-related or muscular? (I have COVID-19-induced asthma on top of the MG breathing weakness; if I pay attention, I can identify the cause of my shortness of breath.)

How is my energy level? Do I feel good in general, or am I tired? If I’m tired, is it because I’m getting sick or run-down from too many consecutive days of pushing the boundary line, or am I just plain old tired today?

How is my strength? Can I brush or style my hair without needing a break? Can I get out of the chair without needing help, or am I using the chair arms every single time? Am I dragging my feet when I walk around the house?

How is my stamina? Can I walk around the house without getting winded or short of breath?

How is my pain? Does my back hurt because of my chronic pain, or are the muscles sore from overuse or overcompensating for the weaker muscles in my hips? Do my hands hurt today, and does it affect my grip strength?

Wow, that’s a lot! I didn’t realize just how much I assess over the course of my morning routine. I give myself at least an hour, usually two, every morning after I wake up to do what I need to do.

The more I’ve given myself this time to assess and then determine my activity for the day, the more my quality of life has improved. My plate doesn’t feel so full, even though my days and heart are. I’m learning to accept and appreciate that recovery days are critical, especially as I push for improving my overall health.

As a result of this discovery, I’ve explored our new property in Wisconsin using my rollator, felt well enough to be out and about in public, and made some new friends. I’ve also been able to help with small home-improvement projects. My mental health has improved, and I am happier.

I’m going to keep pushing my limits and boundaries, seeing how far I can extend the line in the sand, and living my best life. Life with MG is hard and tumultuous, full of ups and downs. I plan to make the best of the ups and embrace the rest that comes with the downs.


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.

Comments

Sally Morgan avatar

Sally Morgan

Thank you for your wonderful articles, I find them very encouraging and they make me stop and think. I find that so much of what you say is so relevant to my own feelings, albeit my MG is at a slightly lesser degree than your own. I am aware that symptoms can show up at any time and so have to keep them under control, being 72 next month I want to be able to continue to enjoy life as best I can for as long as I can.

Very many thanks and keep on writing.
Kindest regards, Sally

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Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.