Yes. The pain, well, hurts, and that sucks. The fatigue interferes with doing things, and that sucks. (The reflux responds well to medication...) But as nasty as the pain and fatigue are, as frustrating as the unpredictability is, the neurological symptoms are the ones that bug me the most.
Perhaps it would be different if I had been primarily an athlete (or maybe not), but the loss of short term memory, the loss of the ability to juggle so much 'state', the difficulty focussing really well and getting into a 'flow state' ... In addition to being even more frustrating than the other symptoms, and more likely to make me feel helpless, these things strike at my self-image and at my sense of What I'm Good At in a particularly painful way.
The pain hurts, but for at least a little while I can grit my teeth and stubborn my way through it (not forever, but longer than I really should). And there are drugs that help take the edge off the pain, knock "10" pain down to "8". Similarly for the fatigue: if I need to, I can push a little harder and go a little longer despite the fatigue, if I can afford what it'll cost me over the next several days.
But the neurological upfuckedness isn't a "try to ignore it" thing or a "push harder" thing, it's a "This Doesn't Work" thing. I can't out-stubborn it or trade recovery time later for doing what I need to do now. When the brain-stuff hits, it's like an amputation: "part of me is missing."
And that is very, very, very hard to take.
And when we try to explain it, we often hear, "Oh come on, everybody has days when they can't remember where they left their keys. Yeah, they do, but not like this.
(no subject)
(no subject)
Perhaps it would be different if I had been primarily an athlete (or maybe not), but the loss of short term memory, the loss of the ability to juggle so much 'state', the difficulty focussing really well and getting into a 'flow state' ... In addition to being even more frustrating than the other symptoms, and more likely to make me feel helpless, these things strike at my self-image and at my sense of What I'm Good At in a particularly painful way.
The pain hurts, but for at least a little while I can grit my teeth and stubborn my way through it (not forever, but longer than I really should). And there are drugs that help take the edge off the pain, knock "10" pain down to "8". Similarly for the fatigue: if I need to, I can push a little harder and go a little longer despite the fatigue, if I can afford what it'll cost me over the next several days.
But the neurological upfuckedness isn't a "try to ignore it" thing or a "push harder" thing, it's a "This Doesn't Work" thing. I can't out-stubborn it or trade recovery time later for doing what I need to do now. When the brain-stuff hits, it's like an amputation: "part of me is missing."
And that is very, very, very hard to take.
And when we try to explain it, we often hear, "Oh come on, everybody has days when they can't remember where they left their keys. Yeah, they do, but not like this.