Hang in there. There is hope for us all. Truly.
Sorry for the long post to follow - I know they're often hard to read. I wanted to share as much as I could, though, in case it helps.
I'm far from healthy right now, but I am light years away from where I was ten months ago. And many of the really scary symptoms are gone completely. So I still need to take it easy on the mental activities, and can't exert myself much, but while I'm lying there living my restricted life, I feel human again rather than like an ill, painful, fuzzy, short-of-breath, ready-to-explode lump. And so long as I take it easy, I continue to feel human.
Some key things that helped me, in case it is useful. This is the wisdom I've gained over the last year since hitting bottom, and the things I wish someone had been able to tell me sooner:
1) Do less, rest more (!!!). ...And even what used to be minimal activities count. Everything you do counts, as it all takes energy (even watching TV, reading, sitting up, eating, etc.). It was hard to tell when I was so sick, because I felt so awful all the time regardless of what I did, but now I can see vividly the effects of my activities. It will likely be a very hard transition, and may involve some mourning at the loss of your former life, but I very strongly believe that if you can come to terms with temporarily putting your life on hold to really focus on getting better, that will make a HUGE difference in the long run, and in your eventual prognosis. By nature, we tend to try to live right to the limits of what we are capable of, but that doesn't leave extra energy for your body to use to heal (and can make you worse as well if you overdo it). The down times where you feel most comfortable will be the times you're improving most. So if you rarely get those times, your overall condition is likely to worsen. I read an ME specialist who said rest until you feel good resting. Then slowly, slowly do tiny bits more and more as you continue to improve (so long as you don't start triggering more symptoms again). In my experience, any activity that wipes you out or that requires recovery is WAY too much for you. You may still choose to push the limits a tiny bit if it's really important to you, but save it for things that are REALLY important, don't try to do significantly more than what you can already handle comfortably, and don't do it more than once a month or less. I've found that the up and down waves of functioning only happen when I've been pushing too hard. If I'm careful to stay within my limits (however frustrating those may have initially been), my condition is actually relatively stable and what I can and can't do is pretty predictable at any given time.
2) Try to come to terms with having an illness, and all of the unfairness involved in that. That means that your life may not look the way you expected it would. It may mean that you won't be doing things the way you thought you would. And that can be a brutal thing to come to terms with. I know for me, it involved a lot of tears and some pretty textbook trips through the five stages of grieving (denial, anger, etc.). But it's helped a lot overall. If you can give up trying to hold onto what you had, and the expectation that you should still be able to do certain things (driving, running errands, etc.), it is much easier to work on getting as much improvement and as much quality of life as possible out of what you have now. So long as you are expecting to be able to run errands, you will be frustrated and/or feeling bad that you can't. If you expect you can't do that now as a regular part of your life, you can begin to be happy and excited once in a while if you're able to do it anyway. As someone else said, I would plan for the worst, but hope for an eventual remission (though with the knowledge that it could be a long time away).
3) Don't measure your health compared to what you could do when you were "normal". You'll go mad. Always measure from your lowest point and compare to that. If you're still sliding down instead of up, you probably really need to change how much you're trying to do (and/or try some treatment interventions) until you find an activity level that allows you to start heading up again. If you're heading up, celebrate all of the things you can do again that were missing for a while. Really, it's amazing how quickly you can adjust and come to terms with even something so difficult when you make a habit of viewing it that way. People are frighteningly resilient that way.
4) Not all supplements are created equal, and with a few exceptions you seem to get what you pay for. Professional brands (e.g. Douglas Labs, AOR, Metagenics, Genestra, etc.) are sometimes WAY more effective. Noticeably more effective. Effective enough in some cases that you could take less and still get way more benefit. (obviously there are probably some exceptions to this, but I've been shocked by the difference with some products). Also that some brands seem to work better for some people, so if one doesn't work out well for you it might be worth shopping around a bit to confirm whether it's the supplement or the brand that's the problem.
4) No symptom is "just a part of the illness" or something that you have to live with. Every single individual symptom comes from somewhere. It has a cause. And consequently, in many cases there are things that can be done to fix them. Some are much harder to figure out than others, and some are much harder to treat than others, but if you can figure out where a symptom comes from, chances are you can at least reduce it. Pay attention to activities, body positions, foods and food groups, etc. Often there are things just in that daily stuff that can have a significant impact. There may be a lot of trial and error and experimenting involved here, but it's well worth it if you can be significantly more comfortable.
5) Do not expect doctors to be informed about this illness unless they are specialists with ME in particular. And do not expect that uninformed doctors will be able/motivated/willing to investigate, learn, or go against the norm to help you (which sounds harsh, but has proven true over and over. Those willing are rare and should be treasured. Those who aren't don't usually have any malice, they just sincerely don't know how to help). In many cases, they may unintentionally feed you outdated or inaccurate information or suggest medications that can even make you worse. It pays to do your own research on their suggestions rather than trusting them implicitly in this. That said, there are some ME specialists out there in the world, and you can learn tons from them. Either with a visit you need to travel for, or by looking at their treatment plans online (on their sites or on this forum). Educating yourself as much as possible (without triggering backslides by overdoing it) can be extremely helpful. If you can't get to an informed doctor, you will likely be your own best resource going forward.
6) I feel strongly that supplements and medications can be extremely helpful, though in some cases it seems to be different ones for different people so you may have to let your individual symptoms guide you. And we do tend to be sensitive, so it pays to go slowly and not to change more than one thing at once if possible, so you can tell better if something isn't agreeing with you (though for me, usually I get signs pretty quick - a few days between adding a new supplement is often enough to tell if one is a poor choice for me). I don't think I can list everything I've tried (too long a list for right now), but I will say that methyl B12 and Dibencozide seemed helpful for me (though be careful about dose and other factors you may need at the same time - see methylation protocols on this site), as did licorice root combined with lots of water and increased salt (I had very low blood pressure and, I suspect, low blood volume). Other things of particular note are antioxidants, magnesium, and immune modulators/antivirals.
Good luck with everything. Hang in there. I really do believe that there really is something better on the other side if you're willing to do what it takes to get there (though it can be a difficult, frustrating, and confusing journey. I know it can. Keep at it.). Many hugs to you. I know it's been brutally hard for you recently. It can get better.
