New Year’s Eve, 2021. Tomorrow, we start the third official year of the pandemic. Would whoever’s in charge of such things turn off 2020 before midnight tonight? Please?
2021 seemed like 2020, Pt. 2. The pandemic plodded on, largely thanks to its biggest fans, anti-vaxxers and anti-maskers, who thought the only thing wrong with the pandemic was that it might not last long enough. While shouting about how they wanted to be free of the pandemic and its restrictions, they did everything they could to assure us all that it wouldn’t end. Thanks!
Wildfire season, again, entered and was the Drama Queen that literally sucked up all the oxygen in the room for multiple states.
Between wildfires and Covid, there was a theme to 2020 and 2021: breathing. Call it the era of Waiting To Inhale.
We’re still dealing with Long Covid here, 20 months later. Definitely better than I was a year ago, but the big excitement for me was getting on the waiting list for my health care provider’s Long Covid program (which hasn’t started yet). Now it has a name: PASC. Here’s a hint for those with Long Covid looking for a doctor: ask what that doctor thinks about PASC. My old doctor didn’t “believe” in Long Covid, as though we were talking about the Tooth Fairy. My current doctor? Filled in the acronym and proceeded to discuss the latest research she’d read about. This was the year I learned to advocate for myself. A friend who works in healthcare said, “Always remember this is a service industry. You are a customer and if you don’t like how you’re treated, you might go somewhere else, and we’re unemployed. If you need something you aren’t getting, speak up!”
A doctor is a business partner. You have to work together to improve your health, and you have to be able to both understand and trust the advice you’re given. You have to be able to communicate. You have to know that you are heard and your concerns are considered. If all of that isn’t true, you might need a new doctor — and don’t be shy about finding a new one.
My own personal pandemic is entering its fourth year. I was just getting over a mysterious and scary illness (that turned out to be a reaction to a virus), when I caught Covid. Yet I still believe the pandemic will eventually end. Mom used to say that everything ends, and if the bad news about that is that good things end, the good news is that bad things end. She also said “Better is always coming. The trick is to hang on until it arrives.”
So hang on. Keep masking when you should, get vaccinated if you haven’t, and cut yourself a big slice of slack. This decade has a lot of room for improvement. When things get better, you want to be able to enjoy it. So rest. Meditate. Listen to music and dance around the house. Pet a dog. Laugh whenever you can. Forgive as much as you can. Be the light until the sun shines again. You are more remarkable than you suspect and more glorious than you know. Give yourself room to stretch out and shine or incubate and rest, whatever you need.
And if you’re the person who should have turned 2020 off, you’re forgiven, but please flip that switch now, please and thank you.
Post-Acute Sequelae of SARS-CoV-2 infection? Covid Cooties?
It seems like forever since the start of the Covid pandemic, but actually, it’s been less than 2 years. Because this was a new virus, information about it is still being gathered and we’re still learning (especially as it keeps mutating), but there is one thing we know: somewhere between 5% and 10% of Covid patients will develop “Long Covid.” The official designation for Long Covid is PASC, Post-Acute Sequelae of SARS-CoV-2 infection. This is not active Covid. It’s a collection of symptoms that persist after the active Covid phase that persists after the initial infection is over.
How long does it last? Nobody knows yet. As of today, over a year and a half since the pandemic started, there are still patients (like myself) who suffer with a variety of symptoms. Some people get over Covid and are fine. Some have symptoms that trouble them 4-6 months later. Some continue to deal with symptoms a year or more out.
What causes it? Research is underway to find out. Theories include inflammation of various sorts. internal damage caused by the virus during the active phase, or the body responding to viral fragments left in the system after the active infection is over (sort of like having a scary cardboard cutout in your Halloween decorations that you later throw away, but for some reason the trash collector doesn’t pick it up, so every time you go outside and see it you jump, because for just a moment it looks like there’s a scary clown threatening you. Maybe your immune system is running across leftovers that make it jumpy). Really, nobody knows yet why it happens, why some people have it and some don’t, or why it lasts different periods for those who do.
What symptoms are included in PASC? A bunch and you might have one or more. These can include:
Shortness of breath
Racing or pounding heartbeat
Fatigue
Headaches
Chest pain/discomfort
Loss of sense of smell/taste or altered sense of smell/taste
Joint or muscle pain
Sore throat
Brain fog/memory loss
Dizziness
Low-grade fever
Hair loss
Anxiety/depression
Insomnia
Hearing loss/tinnitus (ringing in the ears)/earache
Nausea/diarrhea/diminished appetite
Rashes
You might experience one, or more, or symptoms changing over time. And much like Covid19 itself, other symptoms may yet be added to this list. When I had Covid, they asked you about a dry cough or fever and that was it. I reported a bunch of other symptoms that are now on the screening list, but weren’t at the time, so they didn’t pay as much attention to my altered sense of smell, joint pain, chest pain, racing or pounding heartbeat, diarrhea, nausea, brain fog or insomnia. Those were added to the list over time as more cases provided more information. It will probably be like that for PASC.
Severity of PASC symptoms can vary. Some people have fairly serious levels of symptoms daily, and others, like myself, experience cycles that get better, then get worse (and every time they get worse again, it breaks your heart). Symptoms can be reactive to the environment. The recent wildfire smoke has done a real number on me — when the AQI (Air Quality Index) is high, my symptoms are much worse. They can also be unpredictable, really bad one day, not so bad the next, or bad for a week then not as bad for a couple of days. No way to predict.
Who gets PASC? No way to know so far. Previously healthy kids and adults are turning up with it. People who had moderate cases (as I did) or mild cases get it. No real pattern has emerged yet, but if you get Covid, you certainly could.
“Only” 5-10% of people who are tested positive for Covid get PASC, and for some it “only” lasts 4-6 months, so why worry about it? Well first off, those figures are mostly based on earlier versions of Covid, like “Alpha,” the original “wild virus” that I had. Variants are here (like Delta) that are much more contagious, so even if it stays at 5-10%, that’s 5-10% of a much higher number of people. 5% of 100,000 is “only” 5,000, but 5% of 40,000,000, the current number of people who have tested positive for Covid just in the U.S., is a lot more.
Also, variants, well, vary. Delta is far more contagious than Alpha. Does it make people sicker, too? Data’s mixed, but it may. Will it leave more people with PASC? It might. And we’re already up to the Mu variant (so the alphabet from A-M). Will one come along that leaves 25% with PASC? It’s certainly possible.
There’s no guarantee, or way to tell, if your PASC will last 6 months or 3 years. For some people, damage may be permanent. We just don’t know.
What do you do if you get COVID and have lasting symptoms? Talk to your doctor immediately! If your doctor won’t listen (and I’ve had some that wouldn’t), get a new doctor. This is a new disease and research is ongoing. You need an ally who, to begin with, understands that this is a real thing. Understand that some of the tests you have are to rule out other possible causes. Some tests are to show if you have sustained damage. There are no tests for PASC itself yet. They have to test for symptoms and treat symptoms. There’s no treatment for PASC itself.
Take care of yourself. Now, whether you have Covid or not, or have PASC or not, is the time to prioritize your basic healthcare and make it routine. Go to bed on time. Reduce those caffeinated fluids in favor of water. Mind your diet. Meditate, enjoy a hobby, get some exercise, support your mental health. See if your Vitamin D levels are where they should be. All of that supports the systems in your body that you need to encourage in order to heal. Diabetic? Watch your blood sugar.
If you do have PASC, consider joining a support group. There’s a few to choose from, including Survivor Corps on Facebook. Not only do they help spread the word so people understand what this is, it’s a place where you can talk about it and people understand what you’re talking about.
Don’t have it but know someone who does? Consider checking out the support groups to hear what other people are going through, to help you understand what your friend or family member is dealing with. Ask questions, NON-judgemental questions, of your friend/family member and listen to the answers. All of this can be scary, but pretending it’s not real doesn’t make it go away. Consider that this person’s energy levels/attention span/etc. are variable, so maybe he’s okay to go to the ball game one day but can’t have coffee the next and he probably can’t predict. Maybe she seems perky on Tuesday but on Thursday she can’t get out of bed. That can be part of this.
And protect yourself and those around you from Covid by getting vaccinated and masking. If we keep going the way we’re going, we’ll get to the Zed variant and somewhere along the line, we’ll create one that is more contagious, more severe and leaves more people with PASC, just through creating so many variants. Plus, if you know someone with PASC, you want to protect them from a “breakthrough” infection, so if you haven’t gotten vaccinated, make that appointment. Keep washin’ those hands, people! The basics (masking, hygiene) are still great protections against infection.
Sending out best, highest thoughts, wishes and prayers to my fellow PASC patients and their families and friends, and those vaccinated health professionals dealing with this Zombie Apocalypse (I know now who’s really on my Zombie Apocalypse team, and every one of them is vaccinated!). This is not easy to have, or deal with. Here are some sources of information:
So I haven’t been keeping up on our website until just recently. My new hashtag is #IBlameCovid. It’s been 5 months since I was first diagnosed. Here we are in July (almost August) and I’m definitely improved (I know March happened, but don’t ask me about it), but not completely over it yet.
The main lingering symptom is exhaustion. In March, I found myself having to sit on the floor of my shower because I couldn’t stand up long enough to rinse the shampoo from my hair. Now? I can shower, then I have to lie down for an hour. So improvement, yes, but not back to normal.
That’s a common misunderstanding about #Covid19. People think you have it and you die, or you get better, end of report. Not really. For many people, even a mild to moderate case (like mine), where you didn’t have to be hospitalized, produces lingering and often debilitating symptoms that can come and go unpredictably.
Thinking is physical work and it tires me out. Laugh if you want to, it’s true. Sometimes I hunt for common words or to labor to finish a thought. It gets better, then returns. I’m just glad my brain came back at all. For quite a while, I struggled to follow a thought from one end to the other, and conversation left me with crushing fatigue.
I’m writing and editing again, and my brain seems to function, until I get tired, so my working hours are brief and interrupted by rest breaks while I lie down, but at least I can work a bit. I just have to accept that an hour of writing will be followed by an hour (or more) of lying down. It’s frustrating, and I was wrestling with guilt and frustration, but I remembered the lesson a dear friend taught me.
Merlin was my service dog. He had been a starving stray puppy, but he still approached every morning cheerfully, making the most of whatever life offered him that day. We call it The Lesson Of Merlin. He taught me that it doesn’t matter what you planned, or what you feel your situation “should” be. What matters is meeting life where it is and doing what you can with what you have to work with.
Merlin, who tried to teach me all he could.
Which isn’t to say I’ve magically become a yogi and avatar of enlightenment. I have to remind myself every day, sometimes multiple times a day, to look at what I have available that day and make the most of it. If it’s a bad post-Covid day, that may mean lying on the couch all day, watching Shakespearean comedies, history programs and writing classes on tv. If it’s a good day, it’s a bit of housecleaning, writing, playing with my pups, talking with Mark. My challenge is to find joy in whatever I have.
I belong to an online support group for #Covid19 “long haulers,” people who’ve had the disease and are experiencing symptoms weeks or even months along. Most of the people I’ve interacted with have been great — but it’s still not a club you want to join, for obvious reasons.
Early on after I got Covid, I stumbled across a form created by a doctor (I’m sorry I can’t recall his name) for patients to track their symptoms, to make it easier to talk to your doctor. It occurred to me that it would be useful, not just then, but going forward. You need to collect enough information to know what your normal “baseline” is, after all.
If you regularly keep this information, when something goes amiss, you can let your doctor know what’s going on. No trying to recall which day you felt which symptom, how bad was it, what was going on that day. You have it available. I created mine in Open Office as a spreadsheet and included the readings I take and the symptoms I was experiencing.
I’ve never been good at keeping a journal, but this has turned into my journal. I note how I’m feeling, what’s going on, in addition to vital statistics and any symptoms.
If you’re already experiencing health issues, first off, I’m sorry to hear that! If you try out this form, just remember you can adapt and personalize it to fit you. You might have something that isn’t on here, for example. Adjust to fit. Below is a link to the original form that I adapted (scroll down and you’ll see it. This form was developed early on in the #Covid19 pandemic and doesn’t include all of the possible symptoms we now know can be part of this illness. Add whatever you’re experiencing. Even it it’s not Covid, this info can be very useful for you, and your doctor:
