shezbut,

Something your family and DOCTOR need to understand is very simple. When one with PCS has a stress overload and crash, it is like they fell into a hole. Recognizing the hole is not enough. They now need to fill the hole so they can get out.

To put it another way, let's say on a scale of 0 to 10, normal not-crashing PCS is a 5. We get overloaded and crash to a 0 or 1. Getting free of the triggers or stress still leaves us at 0 or 1. We now need to regain the energy and composure to get back to 5. Others think we should be able to automatically return to 5 but that just is not the case.

To make matters worse, we occasionally have days at 9 or 10. These are our high-function days. They are fabulous but usually rare or at least short lived. But our family has now set 9 or 10 as our NORMAL. They do not realize all of the factors that combine to create the perfect storm of high functioning at 9 or 10. Sometimes, WE don't even have an idea why we have such good days.

When trying to relate these ideas to family, friends and ignorant doctors, it helps to create these analogies.

I have lots of different ways to get others to understand PCS. When they finally get it, they are often shocked by how intense and invasive PCS symptoms can be. My wife spent hours talking with our estranged daughter explaining my PCS symptoms as they compare to her bosses daughter who has PCS. My daughter is finally starting to understand, it has only taken 10 years.

My best to all.