I’ve been thinking about, and chipping away, at this post for a bit. There’s a lot to unpack, and that tends to be a non-linear (and, clearly, not a concise) process.
I’m thinking how surreal it is that I passed this 5 yr mark. And that I really really hope that I will not be doing a post about Long Covid, 10 yrs in.
I’ve had a few people ask me why I haven’t written about it lately. It’s partly because I assume people are tired of me talking about it. I’m weary of hearing myself talk about it. And although, by wiring, I am A Talker, or as my brother-in-law Tom compassionately terms it, “a verbal processor”, I actually don’t like to talk about Long Covid very much.
Some of that is due to my inner wrestle with the fact that Long Covid is not my identity, and yet it has created a dramatic upheaval in my life, affecting every single day. I believe that culture can sometimes celebrate victimhood in an unhealthy way, and I stubbornly refuse to slap that nametag on. As I’ve said before, we all have our HARD THINGS. Some are just more visible than others.
I’m also cautious because so much of covid has been politicized. I regularly converse with people who genuinely think my symptoms are simply a result of either a) getting older (“we’re all tired”); b) deconditioning; c) poor nutrition or, closely related, not using a particular supplement; d) in my head/emotional or mental distress; e) being taken in by bad actors who are now flooding the world with misinformation to exaggerate the scope and severity of illness.
And here’s the thing. Almost all of those opinions have some merit. I am older. I am deconditioned. And I certainly can improve in “clean eating”. I sometimes do feel anxious or blue about my health crap. And I don’t know, really, how Covid was unleashed on the world. Yes, I’ve read quite a bit about it. But ultimately my reality is that it happened and I’d rather spend the energy figuring out how to tame the beast rather than dwelling on its origin story.
So while I recognize everyone almost always means well, and they have very valid reasons behind their particular opinions, it is sometimes difficult and lonely to have this big huge challenging thing in my life and yet not feel understood nor believed, nor even able to clearly verbalize all of the facets and impacts.
Luckily, Chad and my kids get it, and they could not be more supportive. I feel extremely lucky that way. (Thanks guys!)
With that lengthy detour into introspection, in honor of having passed the 5 yr mark, here’s the (Long) Long Covid rundown.
I’ve improved. Not dramatically, but noticeably. After a long time of feeling like the needle was barely budging, or that it just kept swinging back and forth, I can honestly say that I am in a stronger place today than I was a year ago. So that’s something.
But I just can’t get into a steady climb. I was doing well early summer, and then came home from Europe with a reinfection of Covid. It set me back several months, although I’ve heard of it doing much worse.
I am well enough to participate more in life. With pacing, I can do the basics of going to work, housekeeping, laundry, shopping, socializing, etc. But the ongoing lesson of Covid is that I’m not in control. I can make plans, but there’s a much higher likelihood today vs. pre-covid that they will be postponed or scrapped altogether. For an impatient, social and naturally active human like me, this is incredibly frustrating.
The holidays were indicative of how crazy-making this chronic illness is. I had all sorts of plans for Christmas Eve and Christmas Day. I love gathering with my loved ones and often make bigger-than-necessary plans for celebrating. I’m also a “The More The Merrier” type of person, and I probably don’t delegate enough, which is on me.
But as Christmas drew nearer, I felt worse and worse. And thus Christmas Eve found me, not at the Candlelight Service we’d planned to attend, but lying on the living room floor while Annie sang Christmas carols to me. (Thanks Annie!) Then lurking silently in the background as family & friends enjoyed our holiday feasts, played games, watched shows, etc. But at least I wasn’t confined to bed.
Frequently, when I overdo, I get into what they call a “crash” or post-exertional-malaise (look it up). This is not a “wow, I’m so sore from exercising” or “wow, I’m completely worn out from yesterday” type of deal. It usually hits 24-48 hrs later. It feels like the Flu, with similar symptoms, and even, as in this latest Extra Fun Holiday bout, vomiting and nausea. Basically, you feel sick. (I always wonder at first whether I’ve simply picked up a virus. But time usually sorts out which is which.)
It sounds made up. And I sincerely wish it were.
The crazy thing is a PEM crash is usually tied to absolutely ridiculous things that you would never think of as “overdoing”. Often it’s combining too much exertion in a day, like going grocery shopping and trying to exercise on the same day. Or cooking a big meal, and then going to a wedding reception, where you stood around talking to people for awhile. Like I said… ridiculous. But it’s my reality.
For the first 53 years of my life, when I lost some fitness level, whether through injury or a new baby or an illness, I simply buckled down and did the work to build back up. I started small and gradually increased intensity and time. It wasn’t easy, but it worked consistently.
Long Covid blasted that tried-and-true cause and effect to shreds.
So I’m still trying to figure out the magical balance of how to push myself enough for improvement, without crashing. But one Win for the year is that generally speaking, I can do slightly more, for more days in a row, than I used to be able to, without a crash. So that’s something.
Oxygen levels have gotten better although they are still sometimes problematic. Our YSA ward had a church meeting recently where most of it was singing. I tried to sing but about 10 min in got really dizzy and winded. So then I tried to sing softly - we were worshipping through music, and I wanted to be a part of it. Then I just mouthed the words. But that little 30 minute meeting threw my o2 off for the rest of the week. After trying a bunch of deep breathing exercises, I went home and hooked up to my o2 concentrator, and even after 2 separate 30 min sessions of supplemental oxygen, my o2 only went up to 92. I still felt pretty crappy. And for a week after that, I’d feel crummy and then measure and sure enough, I was below 90.
Ridiculous.
But on the bright side, several years ago, I didn’t have the breath to sing more than a phrase or two. So there has been improvement.
Sometimes my o2 drops due to exertion or a virus, and sometimes I have no idea why it’s dropped. One thing that consistently and predictably affects it is elevation. Just driving up in the canyon near my home, I can wear my oximeter and watch levels drop, the higher I go. And conversely, I typically feel really good at sea level and always have great saturation numbers while there.
Case in point - last summer we took our family for a little “staycation” up to Solitude Ski Resort, about 40 min from my house. It is in the mountains at about 8000 ft above sea level. We’d rented a beautiful vacation home with incredible views, and I was reminded that being up in the mountains makes my heart happy. Unfortunately, I was also reminded it makes my body unhappy. My o2 was in the mid 80’s pretty much the whole time, and I felt absolutely horrid.
When we were leaving, my o2 was at 85. Then we drove straight to St. George, which is a much lower elevation, at only 2700 ft above sea level. Within 4 ½ hours of travel to this lower elevation, my oxygen was back up to 95. And I was feeling much better.
This response is pretty typical, and has impacted my ability to enjoy my beloved, beautiful backyard mountains.
But again, overall, my oxygen is better than it used to be.
My POTS and dizziness have improved too, as long as I am not doing a lot of up and down. Gardening, yoga, and even picking up the dog poop are things that still tend to trigger it. But I no longer have to steady myself on a wall as I walk.
As mentioned, while I can take care of myself and do a semi-normal daily grind, I have not been able to incorporate much extracurricular exercise back into my life. I have tried. I will keep trying. But so far, even with the help of my doctor and a physical therapist, we have not been able to figure it out. This makes me so sad.
A few weeks ago we were at a YSA activity and someone asked me, “What are your hobbies?” I sat there, quiet. They followed up with, “Y’know, like what are your favorite activities to do?” For 50 years of my life, those answers were easy. Before Covid, I would have rattled off, “Hiking, bicycling, exercise, walking, skiing, pilates, traveling” and so on. But I sat there searching for still intact hobbies, and my eyes filled with tears. I grieve those things. It feels like a loss of identity.
Chad picked up where my mind was going, and suggested, “You like to travel. Or what about reading? Or baking?” And I do like those things (baking needs to be on a Good Day of course). But I guess I may need to find some new hobbies.
The word that keeps coming up in this journey is “BALANCE”.
Trying to balance:
Life’s demands with my greater need for rest (I realize EVERYONE is striving to balance this.)
Pushing enough to improve and not taking an easy out, with meeting my body where it is & being patient with myself
Looking outside of myself, with self care
Acceptance & peace, with not giving up
That’s the tricky part here. I’ve stubbornly refused to say, “this is a chronic illness and this is my life now”. I have PLANS, people!
So I haven’t made peace with it.
But kicking against the pricks isn’t helpful, and as my frequent PEM crashes have shown, I can’t just push myself through this via discipline and PMA.
I’ve participated in various research studies since being diagnosed with Long Covid. In fact, I’m in 2 studies right now. They test my blood regularly, and also take my saliva and urine occasionally. And I have to take incredibly lengthy surveys. Whenever the survey asks me to rate if I think I will get better, I always mark the highest “Yes” answer. So I guess there is still a part of me determined to claw my way through this.
But 5 years just seems like a long time. It’s a hard milestone to hit.
What I *want*, is to find the place that perfectly balances Hope with Acceptance. Faith with Submissiveness. Optimism with Clear Eyes. Grit with Humility. Meekness with Tenacity.
I’ve thought a lot about this. And from my observation, that beautiful balance appears to be God-given, in a rare and distinctive melding of Grace and Choice.
I can think of two particular times I have seen it modeled. And both times were with cousins.
When my cousin Paul was waiting for his heart transplant, bed-ridden in the hospital, and so very, very ill and weak, I remember going to visit him. I was deeply moved as I talked with Paul and his wife. They spoke openly about the situation. They were realistic about the odds, yet voiced their belief in a God of Miracles. They appeared to be incredibly courageous and yet completely and totally submissive to God’s will.
I saw that same stunning, take-your-breath-away balance with my cousin David, when his wife Julie was in the hospital, battling for her life. Julie had cystic fibrosis, and while a lung transplant had gifted her a few more years, things were now going downhill. David B. and Julie exhibited incredible tenacity and strength as they fought, kicking and clawing, to save her life. They left it all on the field, giving everything they had to the effort. They also actively chose faith. Rather than shaking their fists at God, they knelt at His feet. They expressed a childlike acknowledgement that God was in control, and that ultimately, all of our lives are in His hands.
Saying “Thy Will Be Done” when you are desperate for a specific outcome is brutally difficult.
In Paul’s case, his life was spared. And David’s wife passed away.
Even though I’m not dying, I want to channel that elegant balance (there's that word again) that my cousins modeled.
I want to do what I can to improve my health, while rejoicing in my body and life today. Because life is so very good.
I want to trust God.
I want to feel less frustration and self doubt with my limitations.
I want to complain less.
And sometimes, I just want to sleep.
In the words of C.S. Lewis, (or as I refer to him, my BFF-CS), “So I am, you see, one of God’s patients, not yet cured. I know there are not only tears [yet] to be dried but stains [yet] to be scoured.”
Long Covid is a beast. But I’ve slashed off a few scales. So that’s something.
And although they haven’t found the “cure” yet, researchers are making progress in their understanding of Long covid and its mitochondrial dysfunction. I hope by participating in these various studies and donating blood like a starving college student, I can do my small part to help science figure this out.
Until then... “It does not matter how slowly you go as long as you do not stop” (Confucius).
