Myasthenia Gravis Links and News Community Group
This group is for keeping track of news, links, studies, and other information that is helpful for people with Myasthenia, whether you are newly diagnosed or you have had MG for awhile.
This was "borrowed" from another MG site, explaining how we save and use our energy and strength.
A Pocket Full of Nickels
by Steven Taylor (1956-2012)
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"
Yes, we understand that you think of yourself as special (for whatever reason)
and should get more nickels. However, there are no special circumstances or "get
out of jail free" cards. Your determination to dismiss warnings and suggestions
from experienced MGers will only produce the same result it has produced for
decades, an exacerbation or crisis. There is no medical solution or treatment to
prevent it. This reality is not an indictment against your faith or the healing
ability of God. You definitely should maintain or expand your reliance on a
supernatural event. It is likewise not a mark against your manliness or
womanhood, regardless of your profession or environment. However, you must, in
the mean time, be realistic in your approach to the realities of MG. We cannot
force you to accept the realities of MG but MG will without a doubt force you to
accept the consequences of poor judgment.
A Pocket Full of Nickels
by Steven Taylor (1956-2012)
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"
Yes, we understand that you think of yourself as special (for whatever reason)
and should get more nickels. However, there are no special circumstances or "get
out of jail free" cards. Your determination to dismiss warnings and suggestions
from experienced MGers will only produce the same result it has produced for
decades, an exacerbation or crisis. There is no medical solution or treatment to
prevent it. This reality is not an indictment against your faith or the healing
ability of God. You definitely should maintain or expand your reliance on a
supernatural event. It is likewise not a mark against your manliness or
womanhood, regardless of your profession or environment. However, you must, in
the mean time, be realistic in your approach to the realities of MG. We cannot
force you to accept the realities of MG but MG will without a doubt force you to
accept the consequences of poor judgment.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf