My husband has had CFS for about 6 years or so, and while he's overall worse right now than he was 5 or 6 years ago, he has periods of remission where he can return to the gym (he used to be a bodybuilder and physical activity and weightlifting are really important to him), have a fun night out drinking with friends, etc... and then he has periods of time where he's pretty much couch-ridden and even standing for 10 minutes is enough to make him feel sick.
And then there are periods of time where he's in between, some days he needs more rest, other days he's brewing beer and cleaning his guns and cooking, but is still careful to take breaks and rest. On a really bad day, it's so easy to despair, but the fact that he can go from having a really bad day/week/month/year to suddenly having a pretty good day tells me that there is some mechanism that can easily reverse this whole thing. I really believe that there is something triggering his body to believe it needs 'sick behavior' and we just need to figure out how to flip that switch in the other direction. We've been experimenting non stop, some things have helped, others have made him worse, others did nothing. Many things were extremely expensive, but other things were surprisingly cheap.
I recently watched this TV series called Alone, which is a reality show (the only one I've ever watched, since I despise reality TV) where 10 people are dropped alone in a harsh wilderness environment and they complete to see who can survive the longest. And the ones who win are not the super strong military dudes who are overconfident at the beginning, or the hippy-wow-at-one-with-nature people, either. The ones who win are the ones who no matter how hard and awful and frustrating it gets NEVER GIVE UP. And that's really something that CFS has taught me, that when things seem the darkest, it can always get better, and the only way it's going to get better is if you don't give up.
When we've tried the newest thing and he doesn't feel better, and I feel like I'm out of 'next step' ideas, that's when it's the hardest. It's amazing that every time I'm convinced we've tried everything and there is literally nothing left to do, some other idea always shows up (often in the form of a post here), and then I'm filled with hope. Because even if we can't finally flip that switch once and for all, if we can at least find things that improve his situation (some of which we've found already) then life isn't so bad. Will he ever be 100% cured? Probably not. But being this sick makes you realize that you don't need to be 100% cured to have a happy and fulfilling life. It's not 0% or 100%; if tomorrow you could suddenly do 10 push ups again with no problem, wouldn't that feel amazing even if you still had some other issues? Focus on small improvements. If one day you can stand for a few extra minutes, celebrate that and feel good about it. Spending your time in despair and misery is not going help you heal.
And that is another lesson: being this sick really puts life into perspective; it can make you appreciate things you'd never even thought about before. When my husband is having a better day and we are able to go to a brewery or out for a walk, I appreciate it so deeply. Others have already given lots of great advice and I think one of the most important ones is to focus on strengthening your mental state and determination. You are your own greatest resource, and I think that you'll learn that you are capable of being much stronger than you ever thought possible.
One of the things that you'll find as you read posts on this site is that there are a lot of really exceptionally smart people here who know a lot and have some great suggestions. Spend as much time on this site reading everything you can. There is so much really good info here! For example:
http://forums.phoenixrising.me/inde...ce-pem-post-exertional-malaise-crashes.48438/