Jim,
Yep! I feel this way too! I berate myself for it when I see how much more people like you and Christine have been through. Yet, it's me I have to live with every day with little to look forward to and things which appear to be getting worse, not better. My trismus is getting worse despite the exercises. The therapist wants to wean me off the feeding tube but the choices of food by mouth aren't enough to motivate me. The PS says his goal is "quality of life". When? How? I think his idea of that and my idea of that are at opposite poles.
Family & friends mean well but they really don't want to hear my complaints about the pain in my legs, my difficulty walking, the pain in my jaw, the difficulties with eating; etc. They also don't know what to say when I do complain ( which I don't do often). Yep! Surviving or existing?
Pat C