wcg stopped by to spend time with me Saturday evening, and he seemed quite shocked by how sick I was. "I'm better today than I was yesterday or Thursday," I said, and he was shocked again. So then
I was shocked - hadn't I been posting over and over again to my LJ about how I was incredibly, insanely, frighteningly sick?
Today I went back and looked. Actually, I
hadn't. I'd posted a lot of things about my symptoms and what the doctor said and how frustrated I was, but I never said that I was sick enough to wonder whether I should be in the hospital. I never said I was afraid I would have a coughing fit in the bathtub, pass out, and drown. I never said that I was afraid to do anything but lie still when I was home alone. I never said that there was a point at which I was too sick to make myself a cup of tea. My posts sound like things were always basically under control, and they weren't. And yet I wasn't
trying to "fake good." I was trying to be straightforward without being too whiny.
So
wcg wasn't unobservant - I was underreporting. Huh. This is particularly interesting because it's been a subject of some tension between us before, on emotional issues - in that there have been times when I've been quite upset and he hasn't perceived the full extent of it. Although it's true that I don't want to be a drama queen, obviously I need to give more careful attention to the possibility that when things are bad for me I may not be communicating everything I intend to communicate.
no subject
Date: 2003-05-19 11:06 am (UTC)i know that when my dad was in the hospital, visitors were always shocked about how sick he was-- they'd been getting progress reports from us, and reading what we posted on the web, but since we were trying to be as positive yet straightforward as we could about it, there weren't any posts about "in week three of coma; has lost forty pounds and looks gaunt; coughing such that you think he's going to choke and die". instead, posts about "not a lot of improvement, being fed through a stomach tube, still coughing but we're trying to figure out why".
blah blah blah.
anyhow. you're not the only underreporter out there. i'm sorry that it sometimes causes issues for you.
no subject
Date: 2003-05-19 11:18 am (UTC)no subject
Date: 2003-05-19 11:47 am (UTC)(Also FWIW, I was afraid to touch you too much because I wasn't sure what might cause distress. Germs don't bug me much. Especially when they're allergies.)
(no subject)
From:"OMG!!! OMG!!! I'm going to DIE!!!1!!1!"
From:no subject
Date: 2003-05-19 12:27 pm (UTC)It's not just that you can't breathe, and you're uncomfortable. It's that you're scared, that you're weighing every movement between 'do I want to do that enough to have to sit down again for five minutes or more afterwards' and 'if I say I don't want to do it, will they think I'm just being lazy?'
And for me, the fact it completely fuzzes out my brain: the last major bout I had, it was taking me 3+ hours to do the email+Usenet reading that normally was taking me about 45 minutes (without a notable increase in the actual number of posts or anything.)
One thing I think helps, and that I try to do these days is "My lungs are bothering me. That means I can't do X." Sometimes it's a long list of X. Sometimes it's a "I'm going to go have a bath right now, and see if that helps." (Getting into the bathroom, which is low on allergens, and also making sure that any of them are off my body often helps in my case.)
But being clear about what I can do, what I can do if it *really* needs to be done, but I need recovery time after, and what I really can't do helps people be helpful and not surprised. Not that you need to share it publically, but it's the kind of thing I share privately to my partners, and anyone else who might need to know for a specific reason.
(no subject)
From:no subject
Date: 2003-05-19 12:36 pm (UTC)Struggling to breathe is one of the worst sensations in the world. Makes you wonder how anyone can take up smoking, or anything with potential lung diseases down the road.
Believe me, I understand the concern about appearing whiny. : >
no subject
Date: 2003-05-19 02:59 pm (UTC)Subtracting that stuff from the picture in certain ways can be such a big coping tool. Got side effects, though. This'd be one of them. Tricky to balance it all, in my experience.
Although it's true that I don't want to be a drama queen, obviously I need to give more careful attention to the possibility that when things are bad for me I may not be communicating everything I intend to communicate.
Hey. Might I defend the word "drama" for a moment?
Is it possible that what you want to avoid is melodrama, rather than drama? Because, you know, not being able to breathe is basically pretty fucking dramatic, and yet that's what you got stuck having to deal with. And you did deal.
Sometimes life just is dramatic, and then we get to do the best we can dealing with the dramatic stuff. But that's a lot different than rolling in it, which maybe is what you meant by "drama queen". Anyhow, what I wanted to say is that I can't see you rolling in it, or using it as, oh, I dunno, a flag or a stick or a trumpet or a soundtrack-enhancer. And I think, sometimes, that some of us might mistake "stating clearly what level of difficulty is occurring" for "being a drama queen," and I think that's a costly mistake. So yeah, some people freak out at reading or hearing how difficult something is, and some other people mistake it for being a drama queen, but I think it boils down to this:
Even if you keep those folks totally happy by avoiding saying how difficult something is, what's the result? You get to deal with the difficult thing in isolation. Doesn't sound like much of a prize to me. Although I understand how sometimes it can be a valid tradeoff to avoid dealing with somebody else's freakout about one's own difficulties. (I should go make a post to dot.cattiness about that. Something on the order of, "Oh, thank you so much for your reaction to my difficulties. Yes, I would much rather take care of you than attend to the stuff going on with myself, so please, make as much fuss about your shock and dismay as you can, thanks. Comforting you in this time of {your} need is such a nice distraction, and I wasn't doing anything important anyway.")
Eh. Sorry, I rant. But there's something important in there, and I'm gonna leave it in hopes that it's useful, and I think you are an excellent Rivka and I hope that you can find a way of making, um, basic status reports that feels right to you and conveys the useful information to the outside world.
And if you figure it out, I hope you post about it, because I'd maybe learn something personally useful as well, besides being happy for you and glad to hear how it went, and stuff like that.
There's a whole nother discussion on disincentives to communicate this kind of stuff, too, but eh, well, tired for now. I send you well wishes, and also good-information-giving wishes too.
(no subject)
From:(no subject)
From:(no subject)
From:no subject
Date: 2003-05-19 04:43 pm (UTC)Can't speak to other times, other issues...
(no subject)
From:no subject
Date: 2003-05-19 08:53 pm (UTC)Also, when I read this post, especially the first sentence, I thought, "Oh, shit, that's how I felt (except for the breathing treatments, since there wasn't anything wrong with my lungs, just the surrounding infrastructure) for the first several weeks after my accident last year! She's *really* been sick!"
no subject
Date: 2003-05-19 11:15 pm (UTC)Maybe that extends into other things -- sometimes it's hard to know what's going to be taken as overreaction and what's going to be seen as a perfectly reasonable (if not rational) response to a difficult situation.
::wafts gently scented steam at you instead of a hug::
no subject
Date: 2003-05-20 04:33 am (UTC)In any case, I'm glad you're feeling distant enough from feeling that horrible that you're able to recognize the underreporting. That's the best part. :-)
-J
no subject
Date: 2003-05-20 10:09 am (UTC)I've found people tend to have some trouble understanding serious difficulty in breathing and the effect of being that way quite a while, but explaining can seem, I dunno, like whining, to me, too.
I'm glad you have a good doctor.