Tuesday, November 1, 2011

Living With Myasthenia Gravis

On a good morning, we awake with a dollars worth of nickels in our pocket, or perhaps we find them after our first dose of mestinon.

We must decide how to spend this precious supply.

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

Having decided, we act, and our precious deposits is put into an invisible slot, filled with invisible batteries. These batteries kick in slowly and we drain their reserve.

When it is close to gone, we force ourselves to rest. As the day progresses, we decide to do a small chore. The shower, shave, and shampoo? Five more nickels perhaps, the bed? One nickel perhaps, housecleaning? 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 nickel 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, and borrowed from tomorrow, to do what had to be done today to improve our quality of life.

The debt must be repaid, and time in bed will be the price. We can gamble them all away, or spend them carefully. When we awake, morning after morning, with pocket full of nickels. Such an abundance that we no longer have to count them. WE HAVE ACHIEVED MYASTHENIA GRAVIS REMISSION!

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