When I asked one of my friends with M.E. what her frustrations were, this was her response:
"Have you got 3 weeks to read it lol? Its the most frustrating illness I've ever come across. You can't plan, you feel like you're living on luck, you're in pain every day, getting benefits to which you should be entitled to is luck of the draw, you fight to get better which makes you feel worse, you feel useless when you can't even make a meal or string a sentence together. If you have a 'good day' (which is a term I don't like as I am rarely symptom free) its frustrating to try and not be 'normal' as you know you'll pay for it over the next few days. You worry about what people think if they see you out doing something most others take for granted like shopping as to other people you look 'normal' and don't look ill. Its difficult for people to understand how you feel...and if one more person says "Oh, I get tired too..I just....blah blah blah...you should try that" I'll possibly use some of my precious energy in punching them...if the pain in my arms allow it!!!"