Getting my definition of adequate sleep is vital to manage my MG
Resting anywhere is my secret skill in giving myself the care I need
Would you, could you, on the floor?
I could not, would not, on the floor. I will not do it before four.
I will not do it in the chair. I simply cannot on a dare …
No, I’m not taking a beloved childhood story about ham and eggs that are a funny color and turning it into an adult novel that’s 40 shades of green. Instead, those lines adapted from Dr. Seuss are about sleep, which is something I’ve found to be critical in my journey with myasthenia gravis (MG).
In my Army days, I could function on minimal sleep because I had to. Bad guys with mortars liked to send their rockets over in the middle of the night. As a result, I learned early on how to get sleep when I could, and how to fall asleep in the most awkward places.
Have you ever fallen asleep on a bed of rocks? I have. I pride myself on being able to get comfortable and fall asleep just about anywhere. That includes the floor.
Yes, the floor.
Living with MG, and adequate sleep
When my husband and I started dating, he was shocked when he’d enter the living room and see me fast asleep on the floor, right in front of the wood stove. It took me years to convince him that on the nights when my body hurt (not from my MG), I in fact slept better on that hard floor. There’s just something about wood heat that seeps into the body and helps ease my chronic pain.
The more I thought about the utter exhaustion I often felt and all the weird places I’ve been able to sleep — comfortably! — the more I realized that sleep was an integral part of my MG care protocol. The less sleep I got, the more symptom expression I experienced.
My right eye would droop. I’d have increased air hunger and difficulty eating and swallowing. There were more days than not when I was stuck in a sedentary position.
The more I fought sleep, regardless of how I came to get it, the more my body fought back. When I accepted that I couldn’t wake to an alarm or keep a “normal” sleep-wake cycle, the better my MG got. I sleep when I’m tired for as long as I need to. If that means I’m asleep before 4 p.m., then so be it.
It’s taken me years to accept how necessary this seemingly innocuous element of daily life is to maintaining my health. But here I sit before you, declaring that it’s as important as my intravenous immunoglobulin (IVIG) infusions.
Making sleep my top priority is the main reason why the office hours for my web design and new coworking business don’t start until noon. I need my mornings for taking medicines and waking up without an alarm.
I sleep eight to 12 hours a night. Every night. On the nights when early menopause keeps me up with hot flashes or has heightened my normal insomnia, I need my immediate-release pyridostigmine bromide (known best as Mestinon) more frequently, and my body is more fatigued.
When you’re looking at a treatment plan and seeking a balance between living and resting, a good sleep routine that helps you feel your best cannot be understated. Trust me.
So yes, to the Sam-I-Am’s of the world: I sleep on the floor and before 4. I sleep all night and all day. I sleep so I can keep living my life my way.
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.