How To Be Upstanding

The word tachycardia means "fast heart rate." The prefix comes from the Greek word tachys, which, again, means "fast" or "accelerated."

(I just now had a memory of reading that word while working at a hospital when I was 18 and looking up the meaning, and the brady prefix – which means the opposite, so bradycardia is a slow heart rate. This is the sort of thing that comes up a lot, some doc or nurse or PA trying to explain big words that I've known since their parents were in diapers.)

One more. Orthostatic means "standing up." When you stand up quickly and your blood pressure drops suddenly, that's called orthostatic hypotension. We aim to be a full-service blog here.

OK, terms defined. Aside from fatigue, probably the most common symptom long Covid patients have is POTS, which stands for Postural Orthostatic Tachycardia Syndrome (I think the word postural is unnecessary but I am NOT a doctor, people!). I've noticed POTS symptoms since the beginning.

Actually, postural probably needs to be in there, because it's not just standing that does it, but lemme explain.

When we stand up, blood drains away from our head and chest because of gravity. When this happens suddenly, our blood pressure can drop quickly (helps if it was on the low side before standing). We've all felt this sensation, but we don't sense it all the time because of our fantastic autonomic nervous system.

When the blood starts to flow to our feet, signals are sent out to constrict blood vessels, slowing down the drainage. Everything being equal, we should achieve homeostasis – "balance," meaning back to baseline – without ever being aware.

Damn. "Home Stasis" is a great title for a blog post about long Covid. Or the pandemic. Actually I might have used it once. Never mind.

Anyway, I get POTS symptoms when I move my head (this is also common). I don't know what my body thinks is happening, but if I look up or down things can go south quickly. My heart pounds all day long from this.

My smart watch gives me alarms all the time, too. "You experienced a heart rate higher than 100 beats per minute for approximately 10 minutes when it appeared you weren't doing shit, just hanging out." More or less.

A result of this is that I can't be on my feet very long. My body will constantly be fighting gravity, in an imaginary battle, and it just exhausts me. I read a note from a long Covid specialist today who said, "15 minutes per hour, tops (standing)."

This is bad but manageable. I'm better at sitting soon and often. I'm not self-conscious (if you were there and looked at my face, you would know why I just sat down). But I have to get a shower chair, I just realized and, you know. One more thing I can't do anymore.

My point is that after all these years, I'm not only used to these symptoms, I have a good idea about what's going on in a general sense. I understand the mechanism of POTS. I understand a lot about my body that I was unaware of four years ago. It comes with the territory.

Also, it helps if your body is not behaving normally. It tends to focus the attention.

So I know why I wake up. Sort of.

I wake up at 2-3am every night. Usually I get up, eventually, and hope for naps later.

And when I do, I think, cortisol level dropped.

This isn't really what's going on, but it's convenient mental shorthand. Cortisol is a (nope, not gonna define anymore) that always is suppressed at night so we can sleep. But it can be blunted or delayed by dysautonomia, which sometimes allows our blood sugar to drop too low, and our bodies wake up. That's what I mean.

I shouldn't have to know this. I could have lived a great life without quite understanding glucocorticoids. I could have just asked my doctor questions like a normal person.

But I'm awake, and so I get up and write, while I watch the sunrise. There are worse things.

One of the more frustrating aspects of my sickness is the compulsion to document as a continuous Public Service Announcement. At this point in time, estimates hang around 2-3% of the population dealing with this. That sounds small but it's not insignificant, ~10 million, and it's roughly equivalent to the rate of multiple sclerosis, or Parkinson's.

It's a systemic illness, though, and can look like a lot of things, so it might be more like diabetes.

Or, to put it in terms of public attention – there are far, far more people dealing with long Covid than living with HIV/AIDS. Far more.

So you can understand, maybe, what it's like to bring it up to a doctor and see the glazed eyes of oh geez one of these. I don't want to ever see a doctor again, and that is a bad attitude.

And if long Covid is not enough of a risk for you, let me introduce you to these variants, mostly descendants of Omicron, that are circulating among us. The good news is that they most likely won't kill you (0r, statistically anyway, give you long Covid).

The bad news is that they can make you miserable with the coughing (and probably fatigue but y'know, how would I tell?). I developed a sore throat Sunday night, and that was not the Sunday night that happened two nights ago. I woke up today coughing and I'm still coughing. Otherwise I feel OK, but yeah. Be careful.

Finally, I think I've figured out how to keep certain intrusive thoughts from making me crazy and causing me to lash out, justified or not. I understand being angry at all of this; it's not fun, though.

I think most of the problem was trying to understand, which is probably never going to happen, because there's no answer. Other than outta sight, outta mind, I suppose. You write a text message one day, say hi and howyadoin, and then three years go by. You don't notice that the text chain stopped dead in its tracks.

I'm the one who notices. Who stares at that last text message and thinks, Wow. I must have done something...but no, probably not. They just forgot.

So I moved on. I made the simple (but strangely powerful) move of restricting anyone on Facebook associated with my old life at church. The goal was to remove them from my radar (and me from theirs, if such a thing exists) for a while, so I can just freaking heal from all of this, y'know?

I noticed a few reactions to this before I looked away permanently. Nope. And I'm still here, same phone number, email address. Still alive on some other social media, if barely. I didn't disappear, after all. It was just an illusion, but then. Apparently so were a lot of things. Once again, moving on.