more damn vertigo

[mrissa]

Okay, let's try something. Indulge me a minute.

Look up.

How long did it take you to decide which direction "up" was? Did you, in fact, think through the possible directions and make a decision? Or did you just...y'know...look up?

That is one of the things -- one, not the whole -- that happens with my PT exercises. If I am standing in the corner doing head movement exercises with my eyes closed, less than halfway through the set of exercises, I lose track of which way is up and which way is down. I have to consciously think, "up is away from your shoulder; move your chin away from your shoulder." Every time. For at least forty repetitions. Three times a day. Every day. The sensory disorientation does not go away when I open my eyes; then I have the visual cues in addition to the proprioceptive ones. But what I do not have is the one that you, unless you also have vestibular problems, just used automatically. I don't have the essential sense that up is up and down is down.

In my family, "she was so tired she didn't know which end was up," is an expression often applied to toddlers, sometimes to bigger people than that. It works the other way: not knowing which end is up is exhausting. And it is very, very literal. I know which end is up right now because my monitor and my computer have strong black vertical lines, and I am looking at them. My desk chair is currently locked so that it can't tip back, because if it could tip back, I would not have a sense of when it had. I can have the "I have leaned back too far and am flailing to keep from falling" reaction when a normal person would have it; I can have it at a few degrees off vertical; I can have it when I have not moved. It comes upon me at unpredictable intervals, and I have to correct for it every time, or fall.

It has been this way for months. They tell me it will be this way for months more. And one of the very hard things about it is that there are things I can't talk about without giving a misleading impression of whether it was a good or a bad experience. If, instead of point three in the previous entry, I'd written about how exhausting and frustrating it was to navigate MIA trading off which family member had my arm, it would have sounded like I'd had a bad afternoon. I didn't. I was with markgritter and my folks, and we looked at flower arrangements and more permanent kinds of art, and it was good. But writing about the reality of the vertiginous aspect of it would make it sound like it was bad, like I'd had a horrible time. I didn't. MIA patrons were no more inconsiderate, no more physically rude, than strangers anywhere else. And that's the problem: that even the good days, even the good times, are really exhausting and a lot of trouble. They are worth the trouble. They are worth the exhaustion. I feel it's generally a good idea to work for the good things in your life, even when the good things are smaller and the work is harder. But what frustrates me is that I seem to have a choice between describing the hairy, frankly awful details, and having them swamp the idea that it was a good time, or else not describing them, and having people assume that they're going away, that I must be feeling better or I wouldn't be out and about. I'm not. I'm just going completely stir-crazy.

Every week of PT, I think, "All right, this is the hardest bit." I think I'm going to keep thinking that until it's over. Because I think it's going to keep being true.

Comments

[reveritas.livejournal.com]

oy vey.

so who are you worried about thinking you had a bad time if you describe the hairy parts of an outing? or is it general frustration that you won't be understood by your readers?

[mrissa.livejournal.com]

Yah, the general case. I want to give an accurate impression. I also don't want a dozen people saying, "I'm so sorry you had such a bad day," when I had a good day. It would make me feel defensive of Mom, Dad, and markgritter, that this person thought I had a bad time with them, and it would make me also somewhat depressed: Gosh, I had some fun with a little frustration, and this person thinks it was horrible? What would they think of an average day around here, then?

[reveritas.livejournal.com]

i was thinking about this on a walk today and i realised i (theoretically would) solve this problem by oversharing -- not TMI, but every nuance of every part. Such like: "mark and the parents and i went to the botanical gardens today. it was gorgeous! the weather was perfect, we had wonderful raspberry lemonade, and the flowers were amazing: blue roses, purple horseshoes ... The only hairy part was some fucker tried to plow through me and Mark thinking we were being cheesy, what an asshat. Don't do that. But overall it was a good time..."

[mrissa.livejournal.com]

That's definitely one approach.

[rezendi.livejournal.com]

Interesting. I've only ever lost track of up/down very briefly, while scuba diving, and found it indeed a profoundly unsettling experience.

Can you go swimming with your vertigo? If so, what's that like?

[mrissa.livejournal.com]

I have not tried. Moving my head around is really really bad, so I think I'd be left with backstroke, which is my favorite stroke anyway. Probably that'd also be safest in terms of least potential for losing track of directionality underwater. But as I say, I haven't tried. I'd be really leery of getting in and out of the water, too: I haven't been using our hot tub because it doesn't feel safe for me to get in and out of it.

It's getting pretty frustrating that I can mostly do the same old things for exercise. I want to run. I want to dance. I want to stand on my hands. I remember what it's like to be in a handstand that's perfectly balanced. I just can't get back to that feeling from here. At least not in the next several months.

[redbird]

*hug* That sounds like several different pieces of difficult, and yes, worrying about how people will (mis)understand what you say makes it worse.

[kijjohnson.livejournal.com]

Thank you for telling us this.

The good day/bad day thing: I hear you. People are reductionist in what they hear -- "I had a great time"; "I had a terrible time" -- and that's what they respond to. What you may actually be saying (or even just experiencing, but don't want to write out fully, for whatever reason) is much more complicated. "I had a great time in spite of the chronic pain; but I don't want to focus on that, so I'm telling you the good thing." "I had a terrible drive home, which didn't actually put much of a dent into the general awesomosity of my day, but it made me think a little and here's what I realized."

[mrissa.livejournal.com]

Right, exactly: reductionism is not our friend. We like nuance.

[howl-at-the-sun.livejournal.com]

I very much enjoy how you make distinctions. They're sometimes things that I am peripherally aware of, and your posts are a way of looking at them straight on.

Particularly, the thought process while going through stressful situations and still managing to enjoy oneself while not negating the stress, is nice to outright see.

[mrissa.livejournal.com]

That last bit: "and" is an important word. People sometimes think in terms of "but," and that doesn't always work very well. "My friend is sick, but I got good ice cream," sort of feels like the ice cream is supposed to make up for the friend's illness, or like the friend's illness is supposed to drown out the small good that is the ice cream. It's a lot easier to keep noticing the positive things if they're not attempting to be a comparison/contrast.

[howl-at-the-sun.livejournal.com]

I had typed but, but I edited it to and. Go figure.

[arielstarshadow.livejournal.com]

While visiting friends last week, I had the occasion to spin around with a toddler again, thereby making me dizzy and, for a few moments, losing track of the whole up/down thing.

Having that continuously, as you do? I think I'd be ready to rip people's eyeballs out. I don't know how you do it, I really don't.

[mrissa.livejournal.com]

If you can come up with a workable alternative, I'd be glad to entertain suggestions.

[arielstarshadow.livejournal.com]

Sometimes, I dream it would be nice if we could unscrew our heads and put on a different one when the one we have isn't behaving properly...

[mrissa.livejournal.com]

This has come up as a joke around here when timprov is either having problems with his neck or his cerebrospinal fluid: he theorizes that if his head worked like an old corded telephone, he could just have us take it off and let the cord untwist and then put it back on again.

[arielstarshadow.livejournal.com]

Yes! I feel the same way when my headaches or left sinus starts to act up.

[mamapduck.livejournal.com]

I really admire how much you tough out this sort of thing and still manage to accomplish stuff. Brief moments of vertigo during migraines give me just enough insight to be horrified at the thought of having that as a constant theme.

You have a fantastically sucky condition that makes it more challenging to lead your wonderful and blessed life. This is not the same as having a sucky life. You should feel free to tell us how much your vertigo blows monkey chunks without us deciding that Mriss Has A Terrible Life.

So how was the MIA?

[mrissa.livejournal.com]

It was lovely. We were disappointed in Art In Bloom this year, because it seemed like too many of the flower arrangers had gone for overly literal interpretations of the pieces they'd chosen -- AIB is a weekend when flower arrangers choose a piece of art as an inspiration for their arrangements, and usually there's a much broader range of style and faithfulness to the original piece. This year not so much. But I like MIA, and I saw some things that I liked and hadn't seen in past visits, and some things that I liked and had seen in past visits, so that was all very nice.

Also my mom got red velvet cake for her birthday, so she was pleased.

[papersky.livejournal.com]

I have the same problem with pain. Either I don't mention it at all, or that's what the conversation is about. Mostly I go for not mentioning it at all, because the latter is boring, but if I'm ever talking about standing still or going up stairs or anything, you can just automatically read in a certain amount of pain.

Auden has a line "who, when healthy, can become a foot?" I think this sums up this thing pretty well -- when people ask how *you* are and they mean by "you" the thing that is wrong, you have become a foot, or whatever, and also when the thing has to be constantly circumnavigated, it can feel as if it has taken you over. (Generic "you" still.)

There's also the thing of where your baseline is.

If there's a way of talking about this that doesn't get those clueless but wellmeaning remarks, I don't know what it is.

rysmiel is sending you a book. I said "You know, we have a copy each of that book, and Mris doesn't have any copies, and if you could spare your copy you'd be welcome to read mine until we find another copy for you," and rysmiel said "It's her birthday sometime soonish," and I said "Actually, we could just send it now, because maybe it would be cheering," and so that's what's going to happen.

[mrissa.livejournal.com]

Thank you. That's lovely. Happy birthday to me. (And no, Mother and markgritter if you're reading this comment, I am not saving the package for my actual birthday!)

I love that bit of Auden as well. That's just it.

[dichroic.livejournal.com]

Yes. When I had a hurt foot a few months ago, I spent a really annoying amount of time thinking about my foot. And about what shoes I was wearing and where I could go without walking too far on it, and how to use a stick for support (I never had used one before, and what length and rhythm worked best too some experimentation). I'm sure my foot was a much smaller impact to my life than severe vertigo, because for one thing it only mattered when I was walking, and for another at least my perceptions were working. But it certainly did narrow my world, and it was *boring*.

[ckd]

I don't know what to say, so I'll just be here wishing you well.

[mrissa.livejournal.com]

One does appreciate it.

Up With People!

[jymdyer.livejournal.com]

=v= My 2nd Grade teacher was trying to explain compass points and said that, when you're facing north, north is "up." Well, it was admittedly "up" on wall map, but not for someone facing north. I argued the point.

Years later, when my nephew enrolled in 2nd Grade, she recognized the surname and asked him if he was related to me. Then she said that I was the smartest student she'd ever had.

Moral of the story: Keep it up!

Re: Up With People!

[mrissa.livejournal.com]

Your second grade teacher is so sadly two-dimensional. Your poor nephew.

Re: Up With People!

[jymdyer.livejournal.com]

=v= Did I mention that I grew up in Flatland?

Actually, in many ways she was a wonderful teacher. In fact, I had a little crush on her, so the "up" argument felt like my first inkling of a lovers' quarrel.

[one-undone.livejournal.com]

It very likely will be true, yes. But I hope at least that it's needed for a shorter time than they and you expect.

If you want to post about the details of what you're dealing with regarding your vertigo, I promise I won't make assumptions. Sometimes things just ARE, and it's neither positive nor negative or it can be both and sometimes a negative doesn't color the positive at all; that's okay and not necessarily in conflict, though at first glance it might seem otherwise. I guess what I'm trying to say is, I think I understand, and I'd rather you post about how things are going at the risk of confusing some people, than keep it in and have yet another frustration to deal with.

You're in my thoughts and prayers as always.

[mrissa.livejournal.com]

I hope that it's shorter time than we expect now, too, but the expectations are based on a couple months' experience, so.

[brithistorian.livejournal.com]

Ay caramba! When A. said "Poor mrissa doesn't know which way is up," I thought she meant it as a figure of speech. Hopefully things will start going better for you soon. It sounds like you're doing fairly well considering, though.

[mrissa.livejournal.com]

One tries.

In which I attempt to speak Minnesotan...

[brithistorian.livejournal.com]

You know, a person's friends would like to help out in a situation like this, but they wouldn't want to get in the way, and they'd hope a person would feel free to call them if they were needed.

Re: In which I attempt to speak Minnesotan...

[mrissa.livejournal.com]

Ayep.

(Good use of indirection! I think for natives, "A person would sure like to help," would probably be enough, but the rest is definitely not wrong -- along the lines of saying "thank you" rather than "thanks" when you're learning a language.)

(Also, we should at the very least send D's magazines with you one of these first weeks -- markgritter isn't having a birthday party this year, so we won't have the opportunity then.)

Re: In which I attempt to speak Minnesotan...

[brithistorian.livejournal.com]

Yay! I'm starting to get the hang of it! It mentally felt a lot like speaking Japanese.

Would this Friday afternoon be a good time for me to come pick up the magazines? D. really enjoys the magazines he gets from you and we all appreciate it.

Re: In which I attempt to speak Minnesotan...

[mrissa.livejournal.com]

I'm afraid I will likely be gone for at least some of Friday afternoon. Why don't I put it on my list to figure out after we get back from California? I'll e-mail you then.

Re: In which I attempt to speak Minnesotan...

[brithistorian.livejournal.com]

That sounds fine - I wasn't sure exactly when your California trip was. It's certainly something that can wait until you get back.

Hope you have fun on your trip!

Re: In which I attempt to speak Minnesotan...

[mrissa.livejournal.com]

It's not for awhile yet, but there's so much stuff between now and the trip (especially counting PT crap) that adding even a short thing is probably not the best idea for me right now.

Re: In which I attempt to speak Minnesotan...

[brithistorian.livejournal.com]

That's sounds fine. A person wouldn't want to be a bother. ;-)

[elisem.livejournal.com]

Apologies for quoting the whole patch of this, but I gotta:

And one of the very hard things about it is that there are things I can't talk about without giving a misleading impression of whether it was a good or a bad experience. If, instead of point three in the previous entry, I'd written about how exhausting and frustrating it was to navigate MIA trading off which family member had my arm, it would have sounded like I'd had a bad afternoon. I didn't. I was with markgritter and my folks, and we looked at flower arrangements and more permanent kinds of art, and it was good. But writing about the reality of the vertiginous aspect of it would make it sound like it was bad, like I'd had a horrible time. I didn't. MIA patrons were no more inconsiderate, no more physically rude, than strangers anywhere else. And that's the problem: that even the good days, even the good times, are really exhausting and a lot of trouble. They are worth the trouble. They are worth the exhaustion. I feel it's generally a good idea to work for the good things in your life, even when the good things are smaller and the work is harder. But what frustrates me is that I seem to have a choice between describing the hairy, frankly awful details, and having them swamp the idea that it was a good time, or else not describing them, and having people assume that they're going away, that I must be feeling better or I wouldn't be out and about. I'm not. I'm just going completely stir-crazy.

Yes.

That. Exactly.

I get it.

Tea again soon? I can be delivered, with goodies.

[timprov.livejournal.com]

We have crumpets that we don't know what to do with.

[mrissa.livejournal.com]

Will e-mail with details.