Because if I don't have a prayer of at least improving then there no way I'll make it a year with this disease it's. It's not worth it.
@nikefourstar The anguish expressed in your original post is palpable. I'm rather late to this discussion, and you've already received much valuable counsel. Most of it refers to the prospect of physical recovery. For you, in this moment, it's probably more important to focus on the potential for emotional recovery. Based on my experience, this is achievable.
Others on this forum know I'm among the longest-ill members. Yet, I consider my current life to be worthwhile. But that wasn't always the case. A year after the viral infection that precipitated my decline, I described my life over a period of several months as "working, sleeping, and crying". I struggled to keep going, not only because of severe physical symptoms (PEM and NRS, as you've described), but especially because of the emotional instability. This was uncharacteristic for a previously calm and generally content person, and terrifying. It was like I'd changed into an entirely different person.
Like you, had I contemplated living the rest of my life in such a state, I wouldn't have thought it worth it. Fortunately, my emotions returned to baseline, without intervention. These days, my physical limitations are even greater than they were during my emotionally-unstable phase. Yet, I'm almost always able to find something to be grateful for.
People are amazingly resilient. Most will adapt to changed circumstances with a bit of time, and reach a state of acceptance. This doesn't mean you will be, or even need to be, happy with your new "lot in life". But, you may find yourself spending less time contemplating your losses, and more time just "being". And as others have mentioned, there is more reason now than ever before to be optimistic.
You mentioned having a loving family. Have you discussed, really discussed, your concerns with them? If not, may I suggest you do so.
Most of all, be gentle with yourself. Welcome to the forum. I sincerely hope you become an active member -- someone who will share in the excitement of the discoveries about ME we know are just around the corner. Hang in there -- things will get better for you.