This post is a response to Sheryl Chan of A Chronic Voice’s October writing prompts. This month’s terms are: disabling, enabling, committing, communicating, and reinventing.
The first time I heard of Covid-19, my niece brought it to my attention. It was late December 2019, and she showed me a news article discussing this new virus in China and how it had the potential to become a pandemic. I don’t remember precisely what I said, but it was along the lines of “it’s possible it may spread here, but we’re usually pretty good at finding these infections and at least slowing them down. I wouldn’t worry about it too much.”
Obviously, the rest is history. She spent much of the next two years sheltering at home and otherwise being greatly impacted by it. Her whole family also caught covid a few months ago. To the best of my knowledge, none of them have long covid(something I’m extremely grateful for).
I have been concerned about Covid-19 and long covid since the outbreak, especially because I’m part of the disabled community, which, by definition, is at higher risk of worse outcomes from covid infection than any other identity.
I’m especially concerned because I have not one, but two neurological conditions already, both of which do not have physically identifiable causes and both of which are rather stress-responsive. Knowing that long covid often involves neurological symptoms, I’ve been rather concerned about the possibility.
While Covid-19 can be disabling, society’s response to covid-19 is worse
Masking protects lives. It has really really bothered me how much people are ignoring the importance of masks and masking nowadays. I freely admit that there are definitely times I’m not wearing a mask when it might protect me, but I know I’m wearing masks a lot more often than many people.
Vaccinations mitigate risks, and reduce your likelihood of hospitalization or death from Covid-19, but they do NOT protect you from exposure TO Covid or prevent you from getting it. I know I’m preaching to the choir here, it’s just been so frustrating watching people make these assumptions and act as though vaccination meant they didn’t have to think about covid anymore.
Society’s response has been ableist on multiple levels, including the CDC director herself offhandedly commenting how encouraging it was that people with multiple comorbidities were 75% of the people dying from Covid-19.
Dropping the mask mandates, and the politicization of masking have also made life even more challenging than it had to be during this time, especially for our(the disabled) community.
When Al and I caught Covid-19 in mid-September, I was relatively certain of when and where we’d been exposed. We’d participated in a meal at a local restaurant with a group of friends.
Being vaccinated and needing social interactions for my mental health, it had been a calculated risk, so I wasn’t shocked that it happened. I was gratified to see that our host responsibly shared the information so that others who might have been exposed(or unintentionally done the exposing) could test themselves.
Several other folks also tested positive.
It’s good knowing that even though too many people are too unconcerned about masking and spread, I still have surrounded myself with responsible and respectful people.
Enabling a quick(er) recovering
If we had gotten sick early in the pandemic, it’s likely nobody would have known how to help us and we would have struggled more.
As it was, Al and I didn’t bother with PCR testing(which I’m now learning is actually really important for people as documentation of long covid), though I called my PCP’s office first thing Monday morning(I started feeling sick on Sunday afternoon) to discuss my options.
I know that my immune system generally functions more weakly than average, though it is not severe enough to be considered immunocompromised or similar.
When I called the office, I reminded the doctor I spoke to(a colleague of my PCP) that my immune system is generally weak and that I have two neurological conditions(Functional Neurological Disorder and migraines) already and so am very concerned about Long Covid.
She immediately suggested that I try paxlovid, an antiviral treatment that should reduce my viral load.
This not only would reduce how long I had covid-19, but also the severity of my symptoms.
Long Covid isn’t understood well enough to be certain of anything, but it makes a degree of sense that minimizing the viral load also might reduce my risk of long covid.
With rest and liquids and paxlovid, Al(who only had the rest and liquids) and I actually recovered at a very similar pace, with the worst over within those first five days. Al had to return to work after 5 days(he has been wearing his mask at work since he started there, a few months after Covid hit), and I very slowly started to see what I could handle.
Struggling with commitments
As usually occurs when I get sick, I had dropped pretty much every aspect of my life to just focus on healing, including many of my self-care habits.
Meditating really doesn’t feel like a possibility when my throat felt like I was swallowing broken glass, or even afterward when the aftertaste side effect from the paxlovid left me feeling like something had died in my mouth.
Not everyone experiences this side effect and in the grand scheme of things I feel it was absolutely worth it to minimize my risks of hospitalization and long covid. That doesn’t make it a pleasant experience.
Of course, I’d made a bunch of plans and commitments for the weekend following my infection with covid, and I canceled them all to avoid the risk of infecting others. Even after that, I was very slow to return to things, as I discovered that whenever I did anything vaguely resembling exerting myself, I’d feel overheated, almost feverish, immediately afterward.
I also quickly noticed that my FND symptoms were worse than they’d been in years. Whenever I would do much of anything, I’d start rocking back and forth, or my head would start shaking like I was vehemently indicating “no”. And in a way, I guess I was. My body was screaming “too much” and “no more” the loudest it could with these symptoms, and I did my best to listen. That didn’t make it easy.
After missing out on the time I’d planned with friends, the next weekend I vowed that I would participate in the plans I’d made, even if I needed to modify or simplify them.
Communicating about my new limitations
The friends I’ve had for years are pretty familiar with my FND symptoms. They know that I experience symptom flares under stress.
The friend I had plans to meet up with on Saturday was completely understanding. He and his husband moved to Jersey City from New York City during Covid, so now he’s officially a New Jerseyan.
He and I agreed ages ago that we’d meet up at various towns near train stops between where he lived and where I lived and explore the communities while we caught up with one another. For this visit, as I explained how very symptomatic I was, he suggested that we meet up close to home. After some yelp searches, we agreed to meet up two stops north for me and explore the area.
After a tasty meal at a local diner, we went for a wander down a bayside trail and chatted more. We discovered after arriving that there was an Irish festival in town that afternoon, but I reluctantly decided I didn’t quite have the spoons to attend the event.
He understood, and with fond farewells, he went north, while I took my train south and Al met me at the station and took me home.
The next day, at the New Jersey Poor People’s campaign picnic we set up, I got really overwhelmed.
The commute was relatively long, many people who had committed didn’t show, and there was tension within the group.
Other than a great little conversation about accessibility, appropriate terms related to disability, and societal ableism, I spent much of the time rocking back and forth.
A member was able to give me a ride home, so I didn’t need to take public transportation back, which saved me some effort, but I also was dealing with a little extra anxiety as I knew that she’d had Covid even more recently than I had, and wasn’t being as careful about masking as I would have been.
Over the following week, I slowly realized that I wasn’t okay emotionally.
I was having more trouble initiating anything I wanted or needed to do than felt was reasonable, and that was getting worse, not better.
It felt a lot like the issue I’d had last year when I rediscovered that my antidepressant dosage was right where I needed it after lowering my dosage and really struggling with my ability to initiate much of anything.
I also experienced a desire to injure myself – another emotional impulse I hadn’t had in years. I also recognized that they were linked – the urge to self-injure where I first thought it came from nowhere, I eventually recognized it was my brain’s response to my feelings of failure for not working “enough”. I was beating myself up and that triggered the urge to scratch up my arm.
I also realized that shortly after having Covid, I’d dropped a medication that increased my dopamine levels.
I talked to my psychiatrist again two weeks after the medication drop, about a week after I experienced the urge to scratch up my arm, and we agreed that the dopamine reduction may have played a part, and after I rejected the idea of returning to that medication(I’d been taking it to see if it could help me with a separate issue), suggested I try something new.
I agreed to give it a chance.
Reinventing my life to heal – letting go
I’m now a week in on the new medication. I haven’t had more urges to hurt myself(YAY, that stuff’s upsetting)
I also seem to have my mojo back in the sense of having a strong desire and urge to get things done and the ability to keep doing so! I’m thrilled to be better in that sense.
However, I’m still pretty sensitive to strong emotions around me. In some ways this is always true, but with my FND symptoms…it feels like my window of tolerance has shrunk to nothing after my Covid-19 infection.
My FND symptoms are triggered by tension in the room, uncomfortable moments in sitcoms, and attempts to meditate.
In some ways, this happens after any trauma, but I’m honestly unused to my body’s reaction being this severe, especially to the physical trauma of infection(which feels relatively mild to me) rather than the emotional traumas that have historically triggered major symptom shifts in my case.
To handle all of this, I’m dropping the stressors I can and doubling down on self-care.
This week, I told the folks of the New Jersey Poor People’s Campaign that I’m stepping back from my position on the coordinating committee for a while.
There’s been some tension and pressure there, and I had been feeling for the last several months at least that I wasn’t really doing “enough” for the group.
There were more negative than positive emotions around the space for me, so I decided to take some time away to help me recover.
I’m still offering support for any accessibility or disability-related questions the group has, but I’m not planning to attend the weekly meetings so I won’t feel the pressure to do more things for the group – at least not for now while every speck of pressure feels like a boulder weighing me down.
Wednesday night, I was at the gym instead of the coordinating committee meeting and I suddenly got extremely emotional – feeling like I was going to start crying any minute. My FND symptoms jumped up too, and I had a really hard time continuing to exercise.
I ended early, and Al and I went home and I was slowly able to calm things down.
Last night, I got hit with insomnia, and so today I’m not as focused as I’ve been the past few days – but still doing better than I was last week.
I’m still not sure just what’s going on, but I’m going to continue to do my best to understand what’s happening in my body and mind now, and do all I can to return to a healthier state of equilibrium.
Sometimes that’s all you can do.