In Dec of 2019 a craptastic flu was cruising through NYC. I caught it once, then got it again. I started carrying hand sanitizer around. I had also heard about people getting sick in China over twitter and started paying attention to this new disease that was emerging.
By late Jan I figured it had to be in NYC and wondered if I had it in Dec. (I had not!) Covid had cropped up in Europe by then and was incredibly awful, especially in Italy, and the West coast had some cases, though my mind is vague on the real timeframe. By Feb Covid was found in Times Square and even as everyone was being told to wash their hands and you’ll be fine there was a Physicians Assistant in Jersey who had it, one of the first hospitalized, from the Times Square contagion and I still remember him on the news. He was ADAMANT that he could not have got it by touch. He exclaimed he couldn’t figure out where he would have picked it up because he was careful. I had a feeling he was a bit of a germaphobe as well.
I got scared. I would be a traveling vector if I went out too much and started postponing appointments. The sirens started, ambulances traveling to the ER not too far from me, clear as bells bring people into intubation. First a few, one or two, then more and as I went about my life, working at a bar and trying to not touch ANYONE, I saw people touching each other and one bar conversation where a patron said he though the whole thing was overblown and my stomach sank. I looked him in the eye and said I super hoped he was right but Italy says he’s not. We needed a lockdown.
It happened. Curfew and shops closed. I have the date on my calendar because my son and I were staying home and I tracked the days we left the house. During a last minute shop I ran into the bodega for cocoa cola to go with my bourbon. It was crowded, we all tried to stay a bit a part but were not really successful. I washed my hands before and after, avoided my face, washed the items and blammo about 5 days later, the day after I was full of energy and going LET’S RULE THE WORLD WHY I SIT IN MY ROOM ALL HEALTHY AND SHIT, I had small sniffles. Nothing big. Thought it was allergies maaaybe. Then came a light cough, very dry. and FATIGUE. I could NOT stay awake. At night I would wake up constantly though bouts of sweats and chills.
And the sirens got worse.
I could still talk, did some remote work, struggled a little with concentration and for me usually felt better in the evening. Also every couple days I would wake up and feel mostly fine and do things like dishes and laundry in the tub while I had the energy, gathering this illness went up and down from everything I read online.
And the sirens were constant.
And then I got to the time when you get worse or better. I was sick and scared for a month, lying on a small couch, cramps in my calfs waking me, almost passing out trying to walk to the bathroom. Some hours and days were better than the others but most times I could only speak a soft sentence at a time and not quite run out of air, which is why i decided I didn’t meet the criteria to go to the hospital. I should have.
There was a rough couple days in the middle of the month when the sirens didn’t stop, my son spoke to me and I had no understanding of what he said, i sobbed and broke down in fear of what would happen to him if I died and he patted my arm, already over his own more gentle bout of the virus. After that I turned the corner and symptoms started to change, fade some but there were lingering issues.
The brain fog, the shortness of breath, the inability to sustain daily activity – I would do things and then fall apart and not have the will to get up for a day or two – it lasted and I kept trying to manage and somehow packed and moved to the southwest and felt like some sort of failure.
I wasn’t completely ruined and was able to be somewhat normal, which is an act I’ve worked on for 40 years and it helped me front like I was ok to most people. I wasn’t sick sick still but knew that something was WRONG. Everyone I spoke to trying to tell my confusion, inability to find words and concepts, that my brain wasn’t right anymore, told me not to worry, everyone gets older and tried to soothe me. It started to get very scary. I felt I was wrong and I had no one taking it seriously, plus I needed keep making money somehow, rent was cheaper but still needed to be paid, and simply everything, including THINKING, was like moving through mud.
A friend loaned me a pulse oximeter to see if it would clear anything up. My pulse was often strangely low, my oxygen numbers dropping into 80’s regularly after exercise, heart rate in the 50’s, which made no sense to my non-doctor brain, and i would have to lie down and rest and over all it felt like covid was just a part of me now.
I have lists of things all over my home as I tried to remember what I was supposed to be getting done. I spent many days on my mountain with failed internet doing dishes and learning how to make bread because they were simple tasks I could control.
Then one day on twitter, as I did my part to report trolls and bots, a blog entry was shared. It was about another NYC woman who had a similar story. Eerie how close her experience mimicked mine. Luckily she found a neurosurgeon that recognized what she was going through – POTS – and she was telling everyone in case it helped others and it did.
I think I have orthostatic hypotension – a version of POTS – and I think I had it before Covid, possibly my whole life as I think about it, but far less intrusive, far more managed naturally due to my lifestyle. The last few years more fatigue, dizzyness when rising, other things had picked up but after Covid the symptoms became onerous and somewhat debilitating. It has to do with low blood pressure, my leg vessels don’t seem to pump blood to the rest of the body well is I think the gist.
Once I read the article I looked up everything I could and started putting into place the management techniques, like raising the head of your bed, using ace bandages for leg compression before I invest in compression socks, a great deal more water and salt and exercise that doesn’t trigger the drop in pulsox numbers.
That was in oct/nov sometime, and within days the worst symptoms were gone or much less. I could sleep again. My brain fog cleared in a way that I had a soul party about, “yay I’m not damaged for good!”
Dec has been a month of catch up. And trying to stabilize. And relearning routines. And clean up of old farty brain mistakes. And realizing that I have to keep struggling back from a year of illness. But triumphant: I figured it out.