littlemama33, first off, I am sorry for what you are going through....
Yes, mine came on in stages. At first I would get sick every few months for a few weeks. It started getting closer and closer and longer and longer over a couple of years until I was only well for a few days then sick for a couple weeks. I was able to turn it back quite a bit with Ion and Noni juice. The next thing I notices was the post exertional malaise. It took a while for me to figure out what was going on because I had never heard of exercise being harmful for you, but it certainly was making me sick. After a while I went off the noni and Ion and I hit bottom again. It has taken me a couple of years but I am doing OK. Still have to watch everything I eat and everything I do and how much sleep I get, etc., etc. etc.
I have been able to get this far from being very restrictive with my diet, I really believe this is the key, and also watching all the other triggers as mentioned above. I also went back on the Ion and Noni juice.
So to answer your last question, no, I don't believe we have to settle for our lives being destroyed. There are things you can do to at least get back to 70 or 80% normal. Some people have even gotten to 100%, but it is few and I am happy with my 70 - 80%.