Hi,
I'm on the same path as you, but not as advanced. For me my entire digestive system is compromised from throat to the other end. Like you I savour the better days and try to cram in as much as possible while I can. On bad days I sit and watch endless movies, mostly through the eyelids while I wait it out. Touch wood my heart has evaded the effects of Dysautonomia although it has tried to get me a few times. I get moments of temporary paralysis which affect the lower body and can leave me standing frozen and unable to move or tempt a muscle to move, fortunately they are short lived and pass. My motor skills are deteriorating which I find difficult to handle having been a watch, clock and instrument maker most of my life. Recently I woke unable to speak or think of how to speak, it tool a few moments but it passed. I have diabetic neuropathy creeping up my legs and in my hands, I can not tell you what I'm standing on or handling without looking. I only get internal tremors so far and do not get nausea but I'm cursed with vertigo and tinitus constantly. I try not to let my health issues get to me by working every moment I can, hard, unwilling to surrender to this devastaing disease.
I understand and feel the frustration myself dealing with my Dysautonomia.
Cheers