2:25pm December 7, 2012

➸ a large, fruit-eating bat.: Not dead.

munchflower:

It’s my normal response, when asked how I am, to say ” Not dead.” I am not fine, and I have zero desire to say ” I’m fine.”

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“I’m sick and tired of people who know me asking me if I’m fucking feeling better. What part of degenerative…

cowardiceorcourage:

munchflower:

It’s my normal response, when asked how I am, to say ” Not dead.” I am not fine, and I have zero desire to say ” I’m fine.”

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“I’m sick and tired of people who know me asking me if I’m fucking feeling better. What part of degenerative…

I’m sick of that too. Particularly with my gastroparesis. People seem to be acting like, instead of having a progressive condition that I’ve had for probably over a decade that’s been getting steadily worse until I can no longer eat more than the tiniest pieces of solid food, that somehow instead… like I’m supposed to have “gotten sick and gone to the hospital and be getting better and learning to eat real food”. What part of “partially. paralyzed. stomach. won’t. move. that. fast.” don’t these people get!? Or “progressive condition” for that matter. Sometimes these conditions have partial remissions, but barring some kind of medical miracle I suspect I’m going to have a fair bit of trouble eating for the rest of my life. I mean the severity I have is far worse than they expected when I showed up in the hospital, because I’ve just been less and less able to eat over the years, but it was being treated as a combination of other conditions (like “chronic nausea”) rather than something in its own right (like “partially paralyzed stomach that won’t empty fast, probably due to vagus nerve problems”).

I’m also sick to death of people who think just because soup is a “regular food”, then it somehow has more nutrients or is more “real” than Ensure is. I eat soup entirely for psychological reasons, because subsisting on only three flavors of anything sucks donkey balls. So I eat soup, which is basically flavored salty water with very little nutritional value, purely for psychological benefits, not physical ones. Because, you know, that matters, too. If anything soup (at least, any soup I can tolerate, I obviously am not eating the kind that’s closer to stew than soup) is a “lighter” food than Ensure, thus easier to deal with. And so, kind of, further from “real food” than Ensure is, not closer.

And you know, I’m the one who actually has to deal with living with this condition for probably the rest of my life, with possible feeding tubes or stomach pacemakers in my future. Yet it’s everyone else who seems to be going through some kind of grieving process, and then burdening me with their emotions about what it must be like for me to only eat Ensure and soup, or to have almost had them decide to put a feeding tube in before they finally found the right cocktail of nausea meds, or etc. And they don’t seem to get that, for me anyway, dealing with their emotional reactions is harder for me than dealing with the condition itself. Gastroparesis is just plain sucky, it’s one of the few conditions I have that I really loathe. But I can deal with it. I’m just glad they found a way to get nutrition into me. What I can’t deal with is people going into denial, thinking I could just do something simple to make it better, think I should be “working towards” regular food even though I have a hard enough time with just the Ensure, etc. And I’d feel the same way even with a pacemaker or a feeding tube or something. It’s just… it’s complicated, but people make it far worse than it is, and then make me deal with their misconceptions and hopes and denial and grief over me.

I hope that was even close to coherent.