A Roll of Energy: Myositis & Energy
Author: Jerry Young
I was explaining what it is like to have a chronic muscle disease like Myositis to my family. I said it is like getting a roll of pennies every morning. Each penny is an energy disc. You will need one to start your day, one to make breakfast, one to drive to work, one to walk into work etc. I have to try to group my tasks together so that I can get an energy discount. If I were to run out of pennies before I run out of day one of two things happen, either I shut down and do nothing but watch TV or go to bed early (but not sleep early because I have limited sleep) or I borrow a couple pennies from tomorrow with interest. However borrowing tomorrows pennies create a deficit and can lead to energy bankruptcy. This is why I have to say no to some things that the previous me would have never said no to, like taking a walk with my grandchildren.
As time goes on pennies will be added to your roll, and you will learn how to use them where they are more important. A clean car is not nearly as valuable as a game with children.
Do not try to save your pennies for the next day, if you do not use them you loose them.
Try to manage the pennies so that at the end of the day you have used them all, but have not gone over your quota. In proper penny management more pennies are added and through time, life can be somewhat normal. However there is days when we get “shortchanged” and have to get through the day with fewer pennies, as well as occasionally bonus energy. One of the mysteries of these diseases is that we never know when we will get one of these “super days” or when we will have an energy defunct day.
One thing we do know is that whatever kind of day we are having, we still must remember we are on an energy budget and must stay within our budget, or pay the penalty, and this penalty could be painful, which is another story.Tags: family support pain management