Why I Am Not ‘Just Tired’

Retha De Wet avatar

by Retha De Wet |

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(Courtesy of Retha De Wet)

Sleeping is necessary to keep your body functional. Once deprived of it, you learn just how important sleep is to behave how you want to behave. Without it, you stray from your desired character.

With myasthenia gravis, sleeping becomes as important as honey is to a bee. My life revolves around when I should take my daily naps and when I am forced to stay awake to participate in societal living.

Before my diagnosis, excessive sleeping was one of the first signs that something was not right with my body. I would sleep 18 hours a day. I’d wake up and take a shower … only to fall asleep again from exhaustion directly after. I would become tired when preparing a meal and then again after eating the same meal. With muscles that are always weak, making every activity strenuous, it makes sense that myasthenics are always tired and never feel fully rested.

Sleeping does make the fatigue feel less intense, though, which is why I take frequent naps. I struggle to function without them. A telltale sign of myasthenia gravis is that there seems to be a slight improvement in muscle function with rest, and what epitomizes rest as well as sleep? Sleep is as important to my treatment plan as Mestinon (pyridostigmine bromide) or my immunosuppressive medications.

Others often say, “I’m tired, too. Just push through it.” That greatly frustrates me. I am not the same kind of tired as my healthy peers. They might never know the critical levels of exhaustion I experience. They won’t have to, and for that, I believe they should be grateful.

One of the perks of being eternally tired is that I have developed the unique skill of being able to fall asleep anywhere and in most positions. During my current travels through Europe, I have learned that sleeping in any position is a beneficial skill, though it can leave me with a very sore body and stiff muscles. So, my advice is to always make sure you have a pillow or something similar to support your weak neck when you think you might be sleeping in some odd positions, like when using public transport.

Never think that you are weak for admitting you are tired and need to rest. You are strong for taking responsibility for your health. Our muscles might be tired but our souls need not be. Life is beautiful. Never stop fighting.


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.


Heather Kaye avatar

Heather Kaye

I have a travel pillow in the car and use it for all kinds of planned travel,but I also have an inflatable travel pillow that I keep in my handbag.My hubby can ( he has had a lot of practice !!) inflate it in seconds.If he sees me " Going" in cafes etc he gets it around my neck quickly.I have had several bad cases of " Nap neck" and this keeps this to a minimum.These inflatable pillows cost very little, are easy and light to carry around and save a lot of pain.

Louis Velez (1-347-462-1865 ) avatar

Louis Velez (1-347-462-1865 )

I think I need help. I am 75 years of age and live alone. I saw your message on t.v. and I'm trying to communicate to someone. My lack of sleep is creating much confusion for me. I am diabetic and have had heart failure. Please help me.

Kayleigh Chapman avatar

Kayleigh Chapman

I was diagnosed with Myasthenia Gravis last week and I've been battling to sleep ever since. What can I do to sleep better?

Claudette Copeland avatar

Claudette Copeland

I’m newly diagnosed. My chest feels heavy and I’m not sure how to identify a MG (near) breathing crisis. Anyone have this experience?

Tracy Evans avatar

Tracy Evans

I’m so glad to have read this. I can fall asleep sitting up. Sometimes the exhaustion is so exhausting! People just call me lazy, they just don’t understand... how can they when I don’t even understand??? I hate this disease. I hate myself.

Melissa Wade avatar

Melissa Wade

I am about to have a thymectomy in the next few months. I was diagnosed in jan of 2020 with myasthenia gravis crisis. The same thing took my mom's life almost 7 yrs ago because she was left un diagnosed.


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