Hoosier let me say that I totally understand you. My husband was also diagnosed 9 years ago. Not sure how long you spent looking for an answer to what was going on before the dx, but for us it was 2.5 years. My husband has been bed bound and on a vent for almost 6 of those years. I totally get "losing" yourself. I feel the same way. At the time we vented, we felt that was a best choice and now I don't know either if that was right. Other than his ALS, he's healthy, not other issues. He is also what I would call young at just 53. We spent our 40's dealing with this disease and what should have been years getting ready to be empty nesters, going on some great vacations wasn't. I personally see no end in sight and feeling lost is a big part of it. I do get times of respite, not many and not often.
Right now we are dealing with him not sleeping through the night. Due to our age, I still have to work, so being up day and night is very tough. I do have nurses during the day M-F so I can work. Fortunately our insurance pays for that. However, I now need help at night. I'm contemplating switching my schedule so I can work while I watch him at night and then sleep during the day while the nurses are here. My only hang up is the weekends.
We can't feel guilty. This disease stinks to put it mildly. It isn't only the PALS who suffers, this disease affects the entire family. And I know, in the beginning we wanted to be an outlier, however we didn't realize the full impact of what that meant. That was part of the whole vent choice as well. I think if we had fully known the impact we may have chosen differently.
Hang in there and vent here. I've only been here a very short time, but there are many very loving and helpful people here who support each other.
Sue