What makes me tired:

Having to live with an illness that has dramatically changed my life and requires elaborate planning to achieve what is considered in the normal world as simple every-day tasks.

Knowing that most people around me do not understand this " crazy" illness (and I can't blame them for that). Hearing that they think I am "fine" but just use a wheelchair and have a companion because it is more convenient.
And also have a lot of time to do "fun stuff" others are too busy to do.

Knowing that this lack of understanding of my illness, can endanger my life (as happened many times before).

Knowing that even when I am hardly able to move talk or breath, my life still depends on my own clinical skills and my ability to make the people with me understand that although I appear very peaceful and calm, I need respiratory support now!.

Having my accomplishments and ability (with enormous efforts) to continue leading a productive life, being held against me. As, obviously, if I can see a few patients, without compromising my standard of care; can get funding for my research; can write papers that are published in good journals- I can do much more if I only tried harder.

But, with all that, there are also those that do understand me (even if not fully understand my obscure illness), those that support me and have respect for my efforts, those that do their best to help, those that do what I physically can't, so that I can do what I mentally can.

And funny enough, it is mostly the same people. (and even me sometimes that am asking myself, can't I really do more?)

Guess, this is what it means to live with this illness. At least until there will be some better understanding and awareness in the medical community and the society we live in.