A Pocket Full of Nickels...A glimpse into what it's like living with Myasthenia Gravis

by Beverly J. Nason 

On a good morning, we awake with our borrowed supply of invisible nickels in our pocket, or perhaps we find them after our first dose of Mestinon. On any given day, our nickels may add up to somewhere near a dollar. We must decide each day how to spend our precious supply. 

Shall we shower, dress, make the bed, have breakfast, go to a job? Shall we recklessly spend them all at once? Perhaps, we should just use twenty-five cents, and dress without the shower or shave, leave the bed for later, and spend five to fifteen cents to have breakfast. We alone may judge from our recent experience. 

Having decided, we act, and our precious payments are placed into an invisible slot, filled with invisible batteries. These batteries kick in slowly and we drain their reserve with the chosen activities. When the batteries are almost spent, we force ourselves to rest. As the day progresses, we decide to do other small chores; the shave, shower, shampoo? Five more nickels perhaps? I’ll make the bed; one nickel perhaps? Cleaning house? Going to work? 

How many nickels will we have to spend today? For many of us, we can barely afford one nickel at a time, today. If we have the luxury of time for a rest period or a nap, we might awaken with a sudden new supply of nickels in our pocket. Probably our next dose of Mestinon will provide us with a fresh supply. For others, we may find we've chosen unwisely and squandered our day's wealth, or borrowed from them tomorrow, to do what had to be done, or simply what we wanted to do to improve our quality of life. 

The debt of today must always be repaid, and time in bed will be the minimum price. If we spend too much or borrow too long, our debt may be required at the hospital or some medical facility. 

We can squander our wealth all away, or spend it wisely and gratefully. When we awake morning after morning with pockets full of nickels in such abundance that we no longer have to count them, we have achieved Myasthenia Gravis remission. May you all have "pocket full of nickels"