The author, Christine Miserandino, uses the analogy of a handful of spoons that equal the total amount of tasks or energy that she has in a day.
She hands this handful to a friend who doesn't understand her ordeal, and she tells her to count them. Then she asks her friend to walk through her daily routine. Soon enough the friend has to make some drastic choices in her day in order to still have spoons left.
I love this as a great tool to help our caregivers, family, friends and loved ones understand - just a little bit - the invisible pain that we endure daily.
The way I describe it to my family that for every 1 unit of energy I use, I need two units of rest to recover. If I push past my energy unit limit, I tend to then need three or four units of rest. And heaven forbid I get sick, you might just as well write me off for awhile.
I sometimes wish I could put a cast on so that people would see and acknowledge that "there really is something wrong with me", or some sort of beacon that would go off when people come near me "Walking wounded, living each day as it comes, please be careful as patient is fragile." Or something like that.
Any way that we can gently share a window into our lives can be helpful. True friends want to understand. True friends want to help. For me it seems that the barrier is the truly foreign concept of pain that those who are well just don't experience.
I hope these links can be helpful to others along this journey. How do you share your pain with your circle of friends and family?