You probably have never heard of Myasthenia Gravis or MG. But I have a story to tell, and I believe it is important to be heard to raise awareness. It is about this morning, which is typical of most mornings for me, as I and many others like me who live with MG.
It is 8:45 in the morning and the sunbeams pierce the blinds on my bedroom window painting a shadow scene on the far wall, brought to motion by the gentle fall breeze outside as it nudges the foliage from a night’s slumber, awakening it also to begin another in a series of beautiful days. My eyelids begin their morning ritual of trying to part from each other due to ptosis or the drooping of eyelids because I do not have the strength to open eyes and lift the eyelids. Ever wondered how we take such tiny unnoticed but relevant events for granted. How will they work today, better, worse, at all? Well, they are coming open, but my body feels melded to my mattress as I roll over to reach my medicines carefully positioned the night before on the stand beside my bed. I find my withered arm so weakened and frail that I am unable to reach for my pills. Not quite unfamiliar with this situation as one of my daily nuances, I move my hand into my pillowcase where I keep a spare dose in a small bag. I clutch the pills as best I can. The medicine in hand, the ritual of swallowing now confronts me, and this particular day although no saliva is dripping from the corners of my mouth because at its worst days, I sometimes cannot swallow my own saliva, my attempts to swallow require all the ingenuity and patience I can muster, still knowing that the pills will not go down. Hence, I place the pills beneath my tongue sometimes. Tolerating the bitterness and the burning as they slowly dissolve and waiting for their sustenance to enter my circulation and pass quickly to my muscles. It is as if the gentle breeze that moved the leaves now slowly puts my body into motion. It takes a good thirty minutes but I am now able to persuade my still begrudging legs into position so my feet will touch the floor. It is 9:15 now, and I am grasping for support since my leg muscles are affected and fragile as my day continues.
Have you ever thought of how you feel at the end of a long and hard day at work, maybe your shoulders heavy, arms hard to raise, standing upright may be a struggle, and muscles aching and fatigued? Take that feeling and add a 90-pound backpack to your load for the day. If you have not thought of it, think of it now, because it will help you understand. That is how I feel most of the time. Not as I end my day, but as I start it. It’s 10:15 a.m. It has been an hour and a half and the medicine’s effect has peaked, but that represents the apex of my day, for until the next day’s sunbeam begins its dance on that far wall, this represents the best that I will be doing during that period.
The toothbrush is now heavy in my hand, the jaw quickly fatigues from holding open my mouth, and a cough is stirred when a slight miscue in my swallowing mechanisms allows some of the toothpaste to enter my body since the muscles of the throat are weakened too. A cough itself fatiguing my respiratory muscles initiates an extended period of air hunger. I terminate the battle with the toothbrush. My hair is a mess, but cannot entangle it – too heavy a task for the hands and arms- and I can barely let my head down low enough for my hand to even guide the comb to put my hair in place. I quickly choose to pull off a scarf over my hair. To hide the mismanaged hair. Looking into the mirror, I see – oh well, two heads and four ears. The double vision is bad today, totally at its peak. This leaves me with no strength and energy to bathe myself. The pirate-like patch I place on one eye will fix my double vision for now. But not long, enough before the eye in use becomes strained only for the patch to be changed to the other eye – positioning it to be next in the queue to get strained.
The clock shows 11:00 a.m. and my breathing now coming easier. I wasn’t able to get enough sleep at night due to heavy struggled breathing due to the weakened diaphragm. There is nothing wrong with my heart or lungs. Still the shallow breaths not enough to supply required oxygen to the body. I now find myself able to get the other needed medications – the immunosuppressants and the immunomodulators to keep at bay the antibodies against my own muscles, the calcium supplement to keep the cortisone from robbing calcium from my bones, the muscle strengthener that helps the muscles work better, the antispasmodic to keep the muscle-strengthening pill from cramping my stomach and bowels, and what not. Sometimes I wonder if the disease or the treatment is more difficult to bear with. In all, over 10 pills a day. What if it never gets better? Suddenly the anxiety and uncertainty start to seep in. Thank God for a wonderful family !!
Since I’m bent toward musing, during my struggle a recurring thought appears – there’s a HOPE out there, and I know it. Cutting-edge research will come to fruition any time now. I have heard about miracles happening. When will I get it?
It is 11:30 a.m. now and I have made it to the kitchen. Would you like to join me for a brunch, and of course, hear the rest of the story?
-ANONYMOUS
P.S.: This post is similar to one of the articles titled “Living With Myasthenia gravis”, which was published on 9th of Sep 2014, on a support group – Myasthenia gravis society. I do not have any idea about the author. But really wanted to share the details of my own story with the readers to spread awareness about MG.
