One of the blogs I have in 'draft' is about the idea of sharing your IIs with coworkers, but in the meantime I felt the need to post on something specific that happened to me today.
I'm at national new-hire training in Florida this week (don't get excited, yes it's sunny and warm but I don't get to experience it, I'm in freezing cold over-air conditioned meeting rooms all day). It happened to turn out that we were grouped into "breakout sessions" (think classrooms) by home office, so I do know a good number of the people in my group. However, I'm not terribly close with any of them, and while some know I have some weird medical stuff running around, no one really knows what I have, how it affects me, etc ... or what to do if I get sick.
Usually this isn't too big of a concern, at least not lately. And at least up until the last month or so, Shawn or my parents or someone who knows what's going on have always been around. If anything ever went terribly wrong they'd be easy to get ahold of and able to take care of everything. But this week I'm 1000 miles away and surrounded by people who know nothing about me or what I'd need. So today when I was in my morning session and had a sudden attack, I realized maybe this isn't such a good plan...
In short, I think my dysautonomia was the primary issue flaring. I randomly and suddenly became very dizzy even when sitting down, and even started to get a little tunnel vision and heavy/tingly arms. I was sure I was gonna hit the ground right there in the middle of training...thank God I was wearing pants and not a skirt at least, one less worry! After that (and without having actually passed out) I got the shakes. Within an hour, I had a couple whopper PVCs (irregular strong heartbeats that I describe as feeling like someone thumped your chest from the inside), which are usually not so bad, but these were so strong I rocked and had to catch my breath. I also found myself using the bathroom frequently this morning, which isn't a very good sign because it means I'm not retaining fluids. We finally went to lunch, where I salted my entire plate of food - twice - and continued to chug tea (caffeine free mint and unsweetened, I'm trying to be good). But I had to make a decision about telling someone what was going on.
I pretty quickly dismissed the idea of not saying anything to anyone...if I did pass out or something it would only be that much of a bigger ordeal if they started freaking out before I regained consciousness enough to tell them not to. I thought of talking to the instructors for my group but I just wasn't very comfortable with that; besides, one of them is a higher-up at my home office and I don't need someone there knowing more than I'm ready for them to know. I have a couple friends I've been hanging out with in the group but I'm not sure they take me seriously sometimes, and the people at my table in the room already think I'm a drama queen. Finally, on the way back from the bathroom for the umpteenth time I ran into two girls in the group who I'm friendly with, who both happen to be more sensitive than some of the others I've mentioned. Starting with "I don't mean to sound dramatic, but..." I briefly explained that I'm not feeling too well and while everything may be fine, there's a chance I'll get sicker and need someone in the group to know what to do if that happens. Naturally, both were more than willing to help out and very seriously took note of what I said they should do if I did pass out. One of them, being as thoughtful as possible, began insisting that I shouldn't be in class if I'm that sick and should go back to my room, so then I had to try to explain that all this is chronic and unpredictable stuff that I deal with every day, I was just having an unusually rocky one today, and can't take off every time it happens or I'd never work again. Trying to explain my problems without oversharing or pity-mongering...ah yes, this is beginning to feel very familiar now. And just FYI, they did both continue to check on me during breaks the rest of the day and I imagine will be watching over me for the rest of the week. At least there's good people out there.
But that whole saga was only half of what I wanted to discuss tonight. That's the logistical, who - if anyone - do I tell, and how much side of things. The other is the more emotional side. So before I figured out that I could talk to these two women, and ESPECIALLY when the PVCs hit (no matter how hard I try to pretend I'm not wrangled, they scare me every time), I felt so alone. It was bizarre...I felt isolated and invisible in this sea of 1000 (literally) of my peers, plus a few hundred staff and instructors. When those PVCs hit and I had that moment of "omg is this is is my heart stopping" that they bring (it's basically the same thought I have when I crack my stiff neck), a vision flashed before my eyes of me passing out (or worse) in my chair and no one knowing. I suppose it didn't help that we were in a dark auditorium at that point listening to a speaker and I was in the back row. But anyway, it dawned on me that while I was QUITE aware of all the turmoil and chaos going on inside my body, I would probably have to actually fall out of my chair and stop breathing before anyone would know anything was wrong. Not to mention they'd have no clue what was happening or what to do. How could my heart literally be freaking out, my blood pressure dropping unexpectedly, perhaps my blood sugar levels getting out of whack...while everyone around me sat bored and drowsy listening to a man ramble about professional behavior?! Couldn't they see?! Couldn't they hear it?! Oh wait, of course not, it was all invisible and silent inside my otherwise calm, normal-seeming body. Damn!
I was so shocked by this realization that I sat for a moment before I even realized the PVCs were over and I was, in fact, still breathing. How fascinating, I have my own personal hell no one else can see. Oh my. My family 'sees' it, so I forget others can't. I think I need to process this realization a bit more, and consider the implications. I need a plan for future events...ah yes, at least now the pragmatic side of me is returning. It's nice how it comes to the rescue when I get too scared and uncertain emotionally. Oh well, off to dinner now.