Why I Am Not ‘Just Tired’

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.

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