sorry you have this too but it seems like you are in good company. All the people I know with CFS are pretty great people.
Like you the thing that's hard to understand is the people who will make the whole situation harder by their attitude.
Just know that there are a lot of us right behind you each time you try to help them see how it really is. Some just don't want to know, but you will find out who your best friends are. Sometimes it will surprise you who comes out of the woodwork and is supportive. I guess I wouldn't have understood this if I didn't have it as let's face it, it doesn't make a lot of sense to us either. It would just be nice to be given the benefit of the doubt though as we were all pretty go getter type people.
I know of people who have suddenly got well. 2 personally. It does seem a bit different for each person. My Doctor says there are about
5 different catagories and there seem to be different triggers. A virus or chemical are a couple. Some people have been sick for years and then just started to go up and not stop. Some it has been instantaneous. The length of time varies too. A year to many years.
One lady told my husband that she had gone to someone who told her to eat plenty of bread with grains in it but her Doctor told her to take her pulse and if it went up significantly (up over 80 beats per minute at rest) after she'd eaten something then to cut it out of her diet. She found that it was happening with the grain bread. Once she dropped that out she felt a lot better.
I found for myself that when I was really sick I couldn't tolerate some foods but as I got to better phases I could introduce them again. If I over did the exercise then the depression would hit 24 -36 hours later. If I rested then that first bout would be the worst and from then each day would be a bit better.
I try to have a routine as much as I can ,then I can tell more easily if I'm more tired than usual and take it more slowly. After a while you can figure out what the pace you can handle is. Then take it slowly, eat healthy, drink plenty of water and give your body every opportunity to heal itself. The best advice I was given was to do half of what I thought I could. Then there's energy for the unexpected.
I've found the slow breathing does help when I'm not feeling good.
I have been giving myself a routine over the last few years where first thing in the morning I read the Bible and pray for a list of people and me. I guess it's like my meditation time. That way I feel that I can get my head away from the CFS and focus outside myself. It works and reminds me that miracles can happen. You never know the difference a day can make.
Keep in touch with others on the forum as then you will feel that you aren't alone.
I take medication as got to a point where it was a bit to big for me to handle, and the meds have helped. I cut the dose back myself when I could.
If you take vitamin B try to take it in the morning as it can keep you awake if you take it after midday. I found if I could go to sleep at night thinking of anything good that had happened that day and get my head as together as possible it really helped me the next day. Often I think there are people like me but they don't even have a bed to lie in or a meal to look forward to. Sounds a bit corny but it helps. When you are stuck in one room for along time you have to be thankful for the little things as there aren't too many big ones!
I was a RN but now I've gone back to my painting and sell freelance designs for Greeting Cards.
If you can find something that you enjoy to do and do it at your own pace from home when you are up to it, it takes the stress out.
Find things that keep you looking a head but don't put dates on things you want to accomplish as it can be hard if you don't make it.
Hang in there.
The Doctor told me I would have this disease for 3 years. At that time I couldn't see how I would get through the next 5 minutes. What he didn't say was that I wouldn't always feel that bad for the whole time. There would be good days and not so good days and hopefully as you rest and balance things, the dips will get shallower and less severe and the time between them longer.
I really pray that one day you will start to go up and never go back and it won't be too far away.