All in a day’s circus
I had Covid in October of 2020. I’m celebrating my 1-year anniversary this month.
I never got over covid. I wasn’t ever hospitalized, though I was pretty out of it from the beginning. Mostly dizzy. Very, very dizzy. That’s what I remember most. And then I just never got better. Other things just kept coming. One after the other.
Long-haul (or post) covid comes with a number of possible side-effects. I have at least two dozen, however they all fall under one of three categories.
First, blood clots (which is probably the cause of the next two – my doctors tell me this is a vascular disorder.) Blood thinners keep those under control for me, so they’re not a current issue.
Second, neural (brain) swelling – which causes symptoms similar to a stroke victim and took away my ability to keep writing my novels (and why I’ll make a blanket apology about the writing here. It’s actually an exercise assigned to me by one of my therapists. So thanks for your patience.)
And finally – the circus of all problems – dysautonomia (or autonomic disorder.) If you don’t know what that is: when you make a fist you are making a voluntary movement. When you shiver from the cold, that is an involuntary (or autonomic) movement. When you blink – voluntary. When your eyes water, involuntary. When you have autonomic dysfunction, the sky’s the limit with what can go wrong – because a circus master is now in control of all the things you can’t control.
Following are a few stories that sum up my current world.
SIT DOWN PLEASE
I’ve noticed I start to feel anxiety when I see people standing. I start looking for a place for them to sit, and if there isn’t something nearby, the anxiety notches up a bit and I wonder how far away they are from a seat, until I remember that I’m the one with the problem. Most people can stand, and walk, for long periods of time. After a year of lacking that ability, it’s a bizarre concept.
It’s not that I can’t stand. Or walk. I just can’t do it for very long. Three minutes is safe. Five is usually okay. Six is risking it. Anything past that will fail without question.
By fail I mean I will go into…(I’m pausing here because…words…) (two minutes have passed and the word hasn’t come. Good thing I’m not standing, lol. I’m off to look it up.) A FLARE. (That’s the word. Dang it. A simple one.) Anyway, I’ll flare if I am in an upright position for longer than six minutes. Sometimes just four. Or sometimes if I do something wild like try to make my bed (it usually just takes one good tug on the sheets) or bend over to pick up something off the ground.
Here’s what a flare is like: My pulse, while standing, is almost always over 100. But it’ll go up anywhere from 130 to 185. My ear (just the left) has a constant buzz, pulsing to the beat of my heart, at the volume of maybe 3 to 5 (out of 10) all of the time, but it will notch up to anywhere from a 7 to a 10. My head will pulse to the same beat, with a throbbing pain. My heart will palpitate, also to that same beat, so strong that I’m sure anyone can see my shirt moving up and down. There will often be chest pain. And cramping around my ribs. Oh, and I can’t forget the dizzy. Can’t ever forget the dizzy. The stomach will start to rumble in an unsettled way and I’ll usually either get gassy or nauseous or both.
What’s funny is that usually none of that starts until I sit down. And the longer I wait to sit down after the first clue starts (usually it’s the dizzy) the worse it will be. And then it was take at least a day to recover, sometimes more. Which is why I always need to plan my routes when I walk somewhere, so I can go from chair to chair. And it can’t ever be very far.
Yesterday, my dear hubs suggested we go on a drive to see the fall leaves before they disappear. I hadn’t had any doctor’s appointments that week, which meant I literally hadn’t left the house the entire week except for the obligatory step outside to get some sunshine and keep myself grounded. I switch between the front and back porch. Both have chairs just outside the door. But I never last more than a few minutes because it’s either too cold or too hot or too windy and I’ve turned into the wimpiest version of Goldilocks and can’t tolerate anything that’s not just right.
So, after a week of complete indoor hermit living, I eagerly took him up on his offer. My head hurt just a little, which was not unusual, but I decided that I wouldn’t complain while on the drive. I hardly ever left the house and I would enjoy myself if it killed me. Besides, we were just riding in the car. We weren’t even getting out, let alone walking or standing.
I did fine, until we started curves in the canyon. My stomach rumbled and I felt a bit of nausea. The slight pain in head turned into a pulsing throb, which triggered the pulsing in my ear, turning it to a ten. I gripped the door handle with one hand and center console with another, focused on keeping the bile in my throat from coming any further.
Rob asked if I was okay, but I couldn’t think of a thing to say that wasn’t a complaint. Then I gasped for air. I knew that sensation. I’ve spent ten months on 24/7 supplemental oxygen. I don’t use it during the day any more, but we were gaining altitude. Of course.
Fortunately, Rob’s a smart guy and he turned the car around at the next turnabout.
And now I know that I don’t even have to be standing to be triggered into a flare.
GHOSTS IN MY NOSE
It started after I’d had covid for several weeks. The sheets smelled like we hadn’t washed them in months. I was pretty sure that was wrong, but I was also kind of out of it, so maybe they hadn’t? I jumped up and pulled them off the bed. Socks. They smelled like old gym socks. It was awful. And not just the sheets. The blankets too. And the mattress pad. I didn’t have the energy to get that off. I’d have to ask my husband to help me with it later.
How on earth did we let the bed get in this condition? I pushed the offensive fabric in the washer (a major undertaking for me) then went to the couch to have a lie down. But it smelled the same. And not just the couch – the pillows and blanket throw. My favorite minky-soft throw. What on earth? Had my husband stopped washing his feet and then wiped them over every cloth surface in the house? (I probably should clarify that that is not a thing my husband is likely to do. He’s actually terribly civilized.)
I moved to the leather recliner, which gratefully smelled fine, and rested a bit before going in search of some Fabreze for the couch.
This went on for days, with the offensive odor coming and going and me spraying the Fabreze and loading the washer pretty much nonstop. I started to get annoyed with my husband. My feet smelled fine and there’s only the two of us living here. I couldn’t think of any other reason that every cloth surface in the house smelled like old gym socks.
Until I heard mention of phantom smells. I knew that people lost their smell with covid. But I didn’t know they had wrong smells. Ones that didn’t exist. And for some reason they’re almost always nasty smells – skunks, cigarette smoke, rancid food.
It apparently has something to do with cavemen and fight or flight responses. I can’t really explain it. I just know the Long Haul group I’m in, if you bring up phantom smells you get story after story.
The only good thing I have to say about phantom smells is that they are not constant. For some reason my imaginary old gym sock smell was only on fabric, and not all fabric (my clothes always smelled fine). Skunk and cigarette smoke drifts in from closed windows for just a few minutes here and there throughout the day. And after a couple of weeks, they disappeared complete.
Until this month. This time it was rotten food. The smell that floats out of a neglected trash can.
“Did you just throw something away?” I say to my husband, who’s sitting next to me and obviously didn’t just open the kitchen trash can.
“Is the garage door open?”
I sniff again. Definitely putrid. My stomach sinks. “Do you smell that?”
I plug my nose from the imaginary smell. That doesn’t help. I blink back tears.
I can’t tell you how awful this is. Not that the smell is all that bad. I mean, it’s bad. It’s really bad, as smells go. But Covid has brought way worse things than smells that aren’t real.
What’s so awful is that it’s back. One of dozens of symptoms that went away never really did go away.
This thing, whatever it is, that resides inside me and is actively destroying my body, is not going away.
HUGS AND KISSES
I was referred to a neuro-physiatrist the other day. (I’ll bet you’ve never heard of one. I know I hadn’t). She was awesome because she has seen a ton of long haulers and she got me. Plus she knows even more than I do about long haulers (To be honest, I’m usually the one teaching my doctors.) One of her questions was if I thought my memory issues were short or long term.
That was easy. Both. For sure, both. I told her two stories.
First, my daughter, a young adult who lives on her own, comes home every Thursday evening to have dinner with her folks watch the tv show Chuck with us. If you haven’t seen it, you really must look it up. I started watching waay back in the day, when it was new (2007). I’m not much of a tv watcher. I usually read when I have free time, or watch whatever my husband is watching when he’s around. But I do like to have a series to watch on my own time, when I have to do something where I can’t read, like fold laundry. Back in 2007, that show was Chuck. Natalie was around during an episode and got hooked.
When it came time to pick a series to watch as a group, Chuck went to top of the list since Dad hadn’t seen it. But it has not gone as expected.
Watching Chuck this time around has been like some really good friends putting on a production you’ve never seen before. You’re totally invested, because they’re you’re friends, and you are cheering them on, and always happy to see them when they appear, but you have no idea what’s going to happen next. Because you’ve never seen it before.
When Natalie was telling our son about the show, she explained that Dad had never seen it. “And Mom has seen it. I know she has because I watched it with her. But it’s like the first time. She’s surprised by everything.”
But, I pointed out, that’s not all bad. I’ve never been a fan of watching shows twice.
Then there’s story number two. This one’s weird. And embarrassed hubby when I told the doctor. But it’s real. And weird. I said that, right? It’s about our bedtime kiss. You know, the one couples do before going to sleep.
“Good night sweetie. Love you.”
“Good night. Love you too.”
Except more often than not, I don’t remember that. At first hubby didn’t say anything, he just thought I was being weird when I’d wash, rinse, repeat. But then one night I complained that he hadn’t kissed me goodnight. I thought he was teasing when he laughed and said he had. But he kissed me again to appease me and I seriously thought it was the first time.
The second time I didn’t think it was funny when he teased me again. He assured me he wasn’t teasing. But he kissed me again anyway.
The third time I believed him and I didn’t make him kiss me again. But then I laid in bed thinking through my bedtime routine. I’d put on my pajamas, brushed my teeth, washed my face, etc. etc. I could remember every part of it. Except the kiss. It just wasn’t in my brain. I tried to roll over and go to sleep but it felt wrong. Like we were fighting or something. So I made him kiss me again.
Now I make him give me a big passionate kiss that I can’t forget. Has only happened once since. (I blame him. Obviously he didn’t follow instructions.)
So that one’s not so bad either, I suppose.