Long Covid-wise, I’ve had the best week I’ve had certainly in months if not the entire pandemic and I think it’s because of the booster shot I got two weeks ago. Long Covid symptom improvement after vaccine doses is something I had heard of but hadn’t experienced myself when I got my first two Moderna doses back in February and March. I got my Moderna booster the Monday before Thanksgiving, however, and after recovering from the initial reaction to the shot, my symptoms have markedly lessened including reduced brain fog, reduced fatigue, and reduced symptom exacerbation following exertion. Wild.
Some of the best early research about how symptom improvement happens after covid-19 vaccines is being done by Professor Akiko Iwasaki at her lab at Yale and while we don’t know a lot yet, it is actually a thing. Professor Iwasaki says as many as 30-40% of long-haulers have some symptom improvement following vaccines. This could be because the mRNA vaccine targets lingering reservoirs of virus particles in the body or perhaps the vaccine helps tamp down the immune response that has been hyperactive since the initial infection. We don’t know yet, but needless to say, I will take what I can get.
I want to say I’m thrilled. I have been able to do more activity this week than I have in months. I cleaned my house, played with my dog, went for multiple walks, didn’t watch any of my comfort television, read an entire book in 5 days, and even hauled a bunch of firewood to one of the local houseless encampments here. My brain was full of thoughts that didn’t feel like sludge and I didn’t nap all week. It’s the closest to “normal” I’ve felt in two years and while I’m so relieved, I’m apprehensive and grief-laden. Let me try to explain.
First there’s the self-doubt. As I tweeted last weekend, when you’re chronically ill with a host of diffuse and vague symptoms, it is VERY easy to start to think it was never that bad when you have a good day. A couple days of feeling better in a ROW and you’re wondering if you were just making it up the whole time. You start questioning yourself and it feels difficult to disrupt that thought spiral. Suddenly you’re flogging yourself for having just been lazy or deficient and not sick at all.
On day three in a row of feeling better, anxiety creeps in. Without even meaning to, my thoughts immediately shifted to “well if I’m feeling better, I’m going to have to find a job”. I’m not sure how to explain the experience of being so fatigued and flattened that you literally can’t drum up worry even when there is plenty to worry about. But it’s not like that worry just disappears because you’re too sick to entertain it; worry just waits for you and pops up the second you start feeling better. And can we just stop for a second on the part where, in my body (and probably yours), I had three days (72 entire hours) of feeling better than I have been and I jumped right back into work thoughts? How devastating. I have a LOT to say about work and labor but mostly, I’m sad. I’m sad that feeling better-than-outright-horrible-but-not-actually-great is all it takes for my subconscious to start swirling work and productivity thoughts. Frankly, there’s a not insignificant part of me that… how do I say this… would rather be too sick to work than not sick enough to NOT work. Does that make sense?
There’s also grief for the unacknowledged experience. Something that keeps rising up in me is the idea that I will recover from this extended illness period before most people even realize or believe I was ever ill in the first place. Or that, with this improvement, people (I’m not exactly sure who “people” is and why I care what they think) will use it as proof that Long Covid was never that bad to begin with. Much of the medical community that I’ve interfaced with related to Long Covid was happy to minimize my experience, blame it on my obesity or my pre-existing depression, or just throw up their hands with the “covid is too new; we don’t know how to treat it” refrain. If I get better 18 months into a diagnostic battle but before I ever actually get a diagnosis, who will believe me? I find that while I don’t want to be chronically ill, I also don’t want to let go of this illness until people acknowledge it the way I need it to be acknowledged.
And finally, while I am much better this week, I’m not completely better. I still don’t have my taste or smell, my oxygen still starts dropping if my heart rate rises over 135bpm, I still have poor and unrefreshing sleep and I still can’t tolerate heat. My “seasonal” allergies still seem to be a permanent state of affairs no matter the season and I still only leave my house every few days because it’s so tiring. And this begs the question: how much better is *better*? Let’s say, for the purpose of this conversation, I was functioning at roughly 40% before the booster shot and now I’m functioning at 55% to 60%. That’s a huge improvement and yet is feeling 60% of healthy and good… healthy and good enough? Is it good enough to return to work (and again, why is this the first question we ask?!?!)? Is it good enough to say I’m no longer chronically ill? And who gets to decide if it’s “good enough”? Do I get to decide or does capitalism? How do we talk about the impact and impairment of “mild” chronic illness? How do we quantify “mild” exertion intolerance or fatigue? What does it mean that millions if not billions of people work through chronic illness and/or debility and never recognize it as such because it was “mild”? I’m apprehensive about how much murkier disability and illness seem to become when you improve from moderately disabled to mildly disabled- is that even a thing? Can you be mildly disabled? And who gets to decide what mild is? Because even feeling the best I’ve felt in over 18 months is still pretty impairing even though I’m not bedbound and haven’t needed hospitalization. The questions compound faster than the answers.
Maybe this is just the first week of many weeks of improvements to come. Maybe this is just a good week in a continually ebbing and flowing disease process. Either way, I’m trying to just take it all- relief, doubt, grief, and apprehension- as it comes.
[…] struggling a bit. I had that week of good days in a row– the first I’ve had in almost 2 years- and then returned right back to my normal Long […]