Messages in a Bottle #6: Cool as a Snowball in H#ll

From what I can tell, we briefly hit temperatures that were literally hotter than (the 9th Circle of) Hell this week. And, just as the Northeast might get a break from the insane heat wave that is gripping most of the country – for two days at least – I might be leaving it for another roundtrip to Hell. Argh. The 9th Circle of Hell additionally lives up its name by having always been unlivable in the summertime for someone growing up with undiagnosed Ehlers-Danlos Syndrome and the dysautonomia that likes to hitchhike.

I recently(ish) read two separate blog posts (by Narcoleptic Aspie and Crafts, Chronic Illness and Adulting) about how bizarre trying to use a Fitbit or another fitness tracker is for someone with a condition that includes autonomic nervous system dysfunction. Lavender from two years ago completely agrees with that sentiment.

I also discovered this random “journal” entry – not even written in my usual locked leather-bound journal because I was simply too out-of-it to hand-write anything – floating around in the flotsam and jetsam of my personal Dropbox.

The date of syncing of the post was late-July 2016, though given that my text notes sync to Dropbox only when I use wifi, not data, on my phone, the note itself could have been written on my phone anytime within a few weeks of that date. Out of curiosity, I went back and looked at my phone to see what Samsung Health recorded as my low heart rate at around 5:30am in July 2016. (Yes, this does mean my phone is over two years old, for anyone asking. I drop it constantly I’m not going to replace it every time a new model comes out just to shatter another screen!) I suspect this entry corresponds to a heart rate of 46 on July 12th, 2016. My recorded high for that month (156) also seems to have come at a time I marked myself as “at rest.”

It’s strange to think that if, on that date, I’d considered that I actually did have those extremes of heart rate while simply sitting inside in the A/C – and that it was my body, not my technology, that was broken – I might have been diagnosed at least a year earlier. But, of course, I assumed the technology just wasn’t that reliable. (Also, would that I could go back in time to a moment when the world wasn’t ending right now, as was the case two years ago! You know it’s a Messages in a Bottle when it contains that line. The world most certainly isn’t okay in “right now, right now“!)

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July 2016

I hate nightmares. I hate waking up at 5:30am and feeling like I now have to be up and doing something – anything – productive to keep myself safe when the hands-down best something I could be doing would just be to go back to sleep for two more hours.

I wish bargaining with myself actually worked. I wish could actually convince my nervous system that self-care sometimes is the best thing I can do for myself and that sleep makes the things I just had nightmares about less likely to actually spin out of control. I wish I could convince my nervous system I’m more likely to make my deadlines and avoid the failure it thinks is inevitable if I just got more than six hours of sleep in a night.

Unfortunately, I can’t. I can’t even get the satisfaction of proving the effect of PTSD on my nervous system by seeing my fears reflected in my physiological symptoms. Who was that person who first described “heart-pounding” anxiety? Did they not know what they were talking about? Were they alone in history and, ever since, people have assumed that the poetic license of a writer in ancient Mesopotamia reflected the truth? Do they remember how hot it is in the fertile crescent? Maybe that was enough to account for the whole shebang…

I thought it would be reassuring to see a crazy pounding heart when I looked at my heart rate reading on the Samsung Health app immediately after I awoke. No, instead it thinks my heart rate is below the normal resting heart range. It even gave me a helpful little reminder that a resting heart rate as low as mine is not necessarily an indication of disease. “Elite athletes” often have resting heart rates lower than 66. Well, I’m not an elite athlete – especially when I can’t set foot outside even at 11pm without keeling over from heat stroke – so what does that say about me?

Are my peripheral and central nervous system really that out of whack, or is Samsung just touting rather beta-version technology as a standard part of its pre-installed app suite? I’m going to assume the latter because I also don’t see how I can have a heart rate as high as I might expect after exercise (or at least a nightmare) when I’m sitting comfortably at rest. I have many kinds of anxiety, but I refuse to add health anxiety to the list.

If I simply must wake up every morning convinced the world is ending when (so far as I know) it isn’t right now,  I’d at least like the sarcastic satisfaction of scaring my phone with how “scared” I am. It has a little indicator where I can mark I am “afraid” during the reading, so presumably, that should have some actual physical effect on my overall well-being?

Nope. My phone thinks I’m an elite athlete, which means it also appears to think that my problems are all in my head. I’d uninstall that phone app for stigmatizing mental health if it didn’t appear to be a core component of the operating system and not able to be uninstalled.

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Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.

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