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| "Waiting for Answers" by Jenedy Paige |
I've had several people ask me why I don’t talk more about being a long hauler, in person or on social media. That surprised me, because I feel like I talk about it incessantly. (Chad and my kids will back me up on this.) So I started about a month ago to try to put thoughts down to paper.
And I have realized 3 Things.
#1 I am still trying to find that happy medium in between “fake it til’ you make it” and whining. I don’t want to be on either end. With most people, I just assume they don’t want to hear my health complaints or what my oxygen sat rates were that day. But unfortunately, if someone shows more than just polite interest, a switch flips and I go on and on about it. So trying to find the middle ground.
#2 In today’s Age of Outrage, everyone expects the world to see and speak to their pain, in the exact manner most meaningful to them. While being vulnerable and real and open are good and helpful things, individually and as a society, I also worry that we have an unrealistic expectation of what the world’s response should be to that pain.
It can be isolating and lonely to have something SO BIG, which has turned my life upside down, not be seen or even thought valid by society. To be honest, no one completely understands, although Chad and my kids have the closest glimpse. And that’s not anyone’s fault. It’s just that we all have our unique experiences. Plus, Long Covid is a new and extremely complex thing.
But the feelings of isolation I’ve experienced have made me realize how little I understand of other people’s troubles. Long Covid is my HARD. But my neighbor has a different HARD in her life, my co-worker has a different HARD in his life, and so on. And I see them at work or at the grocery store or church, and we smile and greet one another, but I know so little of their personal private battles. I have never lost a child, nor a spouse. I have never been in an abusive marriage. I have never been the victim of racial prejudice. I have never had to declare bankruptcy. The “never have I ever” list goes on and on. So while I can sympathize and mourn with those I encounter who struggle (meaning everyone), I don’t truly understand all that they are carrying, other than that which they choose to share with me.
It makes me want to hug everyone I see.
Because life can be hard.
#3 For as long as I can remember, writing is how I process. The act of wrangling ideas and feelings and pinning them to paper is therapeutic for me.
But writing about Long Covid is daunting. It’s just this massive,unwieldy, shape-shifter. In trying to overcome the symptoms of this bewildering disease, I feel like I’ve been wrestling in mud for an eternity, and I’m exhausted and dirty and bleeding. I’ll have a moment where I think I’m close to a takedown, and quicker than anything, I’m suddenly pinned on my back, a mouthful of mud. I punch and kick and wriggle out, but before I can get my feet stabilized, it has me back in a half nelson.
So it’s hard to catch my breath, let alone process.
But I am learning things on this journey. I shared some spiritual insights in this blog. But I thought I would maybe answer a few basic FAQ’s I get. Read on if you’re curious, bail if you’re not. (Either is okay.)
Frequently Asked Questions
What Symptoms Have You Experienced? Ugh. After the acute stage of Covid, I have channeled through a very lengthy list of symptoms. I cringe when I start to talk about them, because there are so many, it sounds made up. So here’s a link provided by the CDC and another one by mayo clinic. Some symptoms have gone away completely; some I am managing better; some have gotten worse.
Starting at about 4 weeks after getting sick, I have cycled through: Bacterial infections, sinus infections, mild pneumonia, loss of smell & taste 2x but came back both times, vertigo, general dizziness, weird insect buzzing in my ears, numbness/tingling in hands & feet, tonsils were huge and infected for 5 months until we removed them, earaches, stomach and intestinal issues, chest tightness and pain, short of breath, crushing fatigue, weird spots on my tongue for a week, occasional brain fog, hand and leg tremors, weird rashes, body aches, joint aches, and a host of fancy words and acronyms that I now understand: dysautanomia, POTS, orthostatic intolerance, hypoxia, PEM, postviral fatigue syndrome, tachycardia, dyspnea, etc.
(See? Told you it sounds made up.)
Another thing to keep in mind. While there are common things they are seeing in Long Haulers, my list of symptoms is going to be different than another person's. Just like one person's bout with the actual Covid illness varies widely from another person's.
What Are Your Symptoms Now? For the past several months, the main concerns are low oxygen levels, being short of breath, exhaustion, flu-like body aches, sporadic chest pain, spastic heartrate that shoots up suddenly (tachycardia), POTS, and PEM (Post Exertional Malaise). I do also have occasional bouts of brain fog, but it's hard to know if that's Covid or Menopause or Age or Me.
What Causes Someone to Become a Long Hauler? There are a lot of studies trying to figure that out. One theory is that these issues are due to my sympathetic nervous system being out of whack. Some scientists have theorized that it's caused by a "maladaptive stress response triggered by the body in response to the initial Covid-19 infection." Basically, that your body gets stuck in that "fight or flight" high alert freakout. Other findings have to do with compromised mitochondrial function, micro-clots in the blood, or damaged nerve fibers. I think this NY Times article does a good job of talking about current theories and findings. But it will likely be outdated by the time I post this.
What’s The Hardest Symptom? The obvious one is the low oxygen. It's the most dangerous one. But I have been doing some respiratory therapy exercises for the past 6 weeks, and - fingers crossed - I am starting to see improvement. I actually think the most difficult thing for me is the PEM. Prior to getting hit with it, I would have heard someone describe PEM, and been cynical. Because it goes against logic and frankly sounds like a lame excuse to be lazy. So I don’t like to talk about it, even with caring people. But it's a struggle. In normal circumstances, you do a little one day, then a little more the next, and slowly and steadily build on that. But PEM turns that on its head. I keep hearing “pacing, pacing, pacing.” But I don’t know how. If I do too little, I contribute to the deconditioning and weight gain problem. If I do too much, I am in bed and go backwards. PEM doesn’t make logical sense to me, but it keeps biting me in the butt.
Are You Getting Better? I’ve realized there is only one Socially Appropriate Response to this question, and it is “Why Yes, Yes I Am!!” Any other response, or wavering, is usually met with pep talks, and comments about how I look better, and other attempts to convince me that I just hadn’t realized it but I am indeed much better. It's because people want me to feel better, and are trying to be positive, which I appreciate. But sometimes it doesn’t feel like I am getting better.
If my husband is nearby when someone asks that question, he has started answering for me. He’ll say, “Yes, she is.” and he’ll remind me about how I used to not be able to drive or really even leave the house, and that I am working more hours, and my throat is healed.
And here’s the thing – he is absolutely 100% right. I am better, in many ways. But because I still regularly feel pretty awful and can’t do the things that I want to do, and because this is still interfering so much with my day-to-day life, and because almost weekly I have to bail on things I planned, it’s sometimes hard to recognize the progress.
“YES” is not only the Right Answer, but it is a truthful one. It’s just that it’s a baby-steps, one-step-forward-two-steps-back kind of YES. So forgive me if there’s a pause before I answer that question.
But I saw you the other day and you seemed fine? I probably was, in that moment. Because I have hours and even days when I feel decent. (Another indication I’m getting better.) But what most people don’t recognize is that if I am visible and in public, I am having a good moment. You don’t see me or hear from me when I’m not. I go to church, and then come home and crash. I go to the store or the office, and it’s my Activity for the Day. Even on Good Days, I have to rest after any type of excursion. I hope to improve that, but right now that’s how it is.
Are You Sure this is Related to Covid and not just other viruses and illnesses? Yep. Started with Covid. While some of the early things like sinus infections and ear infections might have just been add-on viruses, none of the issues I am currently dealing with were factors prior to Covid, AND they align with the “most common symptoms” lists in any Long Covid study.
Could You Have Gotten this From the Vaccine? Nope. Symptoms hit 4 months prior to getting vaccinated, and right as I was recovering from Covid. Similar to most people, I felt crummy for a few days after receiving the first two vaccines, but otherwise, the vaccines did not make my symptoms improve or worsen long term. I got the booster, and will happily get any other shots that might give me a chance of getting over this or preventing another bout.
Are You Angry with the Person Who Gave You Covid? I don’t know who shared Covid with me, but I’m certain they didn’t have any clue they were doing so. Covid is my enemy. Not people. I think we sometimes forget that.
But what about (fill in the blank of Covid-related offense)…? I repeat. People are not my enemy. Covid is my enemy. Just don’t try to tell me that the last 14 months of my life are made up. (That annoys me.)
Are You Pro-Vaccine? Yes. However, I am not angry with people who choose NOT to get vaccinated. We each have our unique perspectives and histories, which impact our decisions. I believe the reports that some people have responded poorly to the vaccine. And I respect that others may have other experiences that influence their feelings. I am a strong pro-vaccine advocate, because had I received the vaccine prior to getting sick, evidence indicates I would've had a much lower chance of it triggering Long Covid. And while I respect others’ personal feelings on vaccinations, I do get irritated when they invalidate my experience.
Could Stress Be Doing This To You? Stress lowers our immune system and can bring a host of health issues. But so far, there is no scientific evidence linking stress with a higher chance of getting Long Covid. One study indicated that those who jumped back into a fast-paced routine too quickly after getting Covid appeared to have a higher incidence of Long Covid. So I guess according to that study, being an on-the-go type of personality might have contributed. And as mentioned above, one theory is that my body got stuck in the "fight or flight" mode during Covid. So in that respect, I guess your body’s over-stressed response is a factor.
Were you really sick when you had Covid? No. It felt like the flu or a really bad chest cold. I was never hospitalized. My oxygen stayed between 92-89, which isn’t terrible.
Could Your Weight Be Doing This To You? I gained 20 lbs in one year, which is not healthy for anyone. And the extra weight is certainly adding to my issues. But it is not the root cause.
Could You Just Be Depressed? On hard days I do feel depressed, but luckily, so far, I am not suffering from clinical depression.
Why Aren’t You Getting Over This? Please ask God, and then let me know.
Are People Getting Cured from Long Covid? Yes, and no. One study that looked at Long Haulers 18 months out said that 2% reported being back to their pre-covid selves, 22% said they were significantly better than they were at 12 months, 31% said they were slightly better, and the rest said they were worse or the same. My Long Covid clinic mentioned they are starting to see people manage symptoms better and significantly improve between 15-18 months out. So I am praying that I will be in that category.
Is There a Cure? Not yet. It’s super complicated. But as mentioned, many are seeing their symptoms improve eventually, over time. Also, there are a lot of studies going on right now, and they are starting to see specific differences, for instance, visible differences in the lungs and in the blood between long haulers and those who successfully got over Covid. So I am hopeful that there will be a cure someday.
Are You Still on Oxygen? Just attempting to wean off this week. Fingers crossed.
What’s The Hardest Thing? Depends upon the moment. But probably three of the top ones would be: 1) Often having to cancel plans despite how much I want to participate in said plans. The lack of control is difficult. 2) The unknown. Not being able to make a linear Recovery Plan, or have a proven cure. 3) PACING.
What Do You Wish People Knew? That I am sorry for whatever HARD thing they are going through in their lives.
And if you read all of that, congratulations, you now have an advanced degree in Long Covid According to Christy.
