Lucie, I know what you mean....I am the same way!!!!
One of the weird "blessings" of this disease - if you can call it a blessing - and I choose to do so, because it's too depressing not to - is that it has taught me that I am NOT in control all the time, I do not KNOW everything, and that I HAVE to slow down and roll with the punches sometimes. It's very humbling! I still struggle with it mightily - and often fail to attain more than a molecule of grace and equanimity - but I don't know if anything less "dramatic" than this would have taught me those skills.
I know I am just trying to make lemonade out of some very sour lemons - but whaddayagonnado? ;-)
I do have MUCH more empathy and compassion and patience for people now, and it's wonderful. A much happier way to live, really. And I have also found that I am usually my own worst critic...I often feel like I am a drag on my family, but am finding that the things they value me for go way beyond being strong or healthy or in control. What a profound blessing that is!!!!
And also remember that it is a STRENGTH to change and adapt to new circumstances - so what feels like weakness (getting extra rest, going to endless appointments, taking pills, listing symptoms) can actually be a new sort of self-discipline and power.
And remember we're always here to complain to!!!! :-D