This poem is so spot on for me and I am sure many of my friends. By the time I shower and dress, I have to rest before I can do anything else. Cooking a big lunch puts me in my chair for the afternoon. A simple trip to Jackson tires me out the next day. I really have to weigh just what activities are worth my "nickels" and whether or not I can spend them in certain ways. Pushing too hard can land me in the hospital and right now, I certainly do not want to be there!
Congenital myopathy is another one of those "invisible diseases." Other than my weight, I look healthy. So many of us with illnesses that make us so tired look great to people who don't know what we deal with.
I'm not really complaining here. While I miss having energy and being able to do more for myself and other people, I am thankful for what I still have. But, I would sure love to have a few more nickels!
On a good morning, we awake with a dollars worth of invisible nickels in our pocket, or perhaps we find them after our first dose of Mestinon.
We must decide how to spend this precious supply.
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 for breakfast.
We alone may judge from our recent experience.
Having decided, we act, and our precious deposits is made 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 decided to do a small chore.
The shave, shower, shampoo? Five more nickels perhaps?
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 must be repaid, and time in bed will be the price.
We can gamble them all away, or spend them gratefully.
When we awake, morning after morning, with pockets full of nickels,
Such an abundance that we no longer have to count them
We have achieved Myasthenia Gravis remission
May you all have “pocket full of nickels”
