The Disabled Writer

Dealing with Long Covid isn’t something that’s fun for anyone. It’s still something we don’t yet fully understand, and we’re still learning exactly what the long-term implications of it are. But when you went into it already having a disability? Well, then it just gets that much more fun for you. So what exactly does all this mean?

Dealing With Long Covid Isn’t Fun For The Average Person.

Covid wreaks absolute hell on our bodies. Permanent lung or heart damage aren’t uncommon. Neither are neurological problems, digestive problems, chronic pain, or chronic fatigue. While it’s not fully understood yet why Long Covid is a thing, there are theories about it from prominent medical institutions, such as everything from organ damage from the disease itself to long-term immune system issues arising from the body trying to fight the infection.

I have friends whose stories are unfortunately quite common- they didn’t have any known health issues, and then they got Covid. Afterwards, for weeks, months, or even seemingly permanently, they’re left with lasting symptoms. One friend of mine from music school had trained as a singer. She’s still having to totally re-learn how to sing and breath, two years after getting sick, because Covid trashed her lungs. Not only is her career immediately impacted by this, but there’s a very real possibility it might be over, at least in the capacity she’d hoped for.

I have another friend who used to run three miles every morning to start off his day. Eight months later, and anything more than a flight of stairs leaves him totally winded and unable to keep going.

Arrhythmias, chronic headaches, dizziness, and brain fog are just as common. At least half of the people I know who’ve had a major case of Covid exhibit brain fog, where they can’t focus well or think properly.

And these are all just from people who went into this not having any major health issues already going on.

So What Was My Baseline Going In?

Medically speaking, a “baseline” is whatever someone’s “normal” is considered to be. Health exists on a spectrum, and not everyone’s normal is the same. For instance, let’s say my creatinine levels—a type of blood test for kidney function—are elevated. Now, that’s nothing to get immediately concerned about. My regular creatinine levels—my baseline—is higher than normal, so unless it’s way above that, no need to worry.

So let’s sum up my baseline, pre-Covid, post-infusion: We’ve got your chronic pain and fatigue. We’ve got a slight arrhythmia, mild asthma, and a propensity for high fevers. Neurological problems that cause everything from the aforementioned chronic pain to tinnitus to balance issues, memory problems, cognition issues, and more. And a handful of other things, from a messed up digestive tract to uncooperative joints to a bad sense of humor. That last one is particularly troublesome, I hear it’s incurable, and unfortunately also affects everyone around me.

My baseline, pre-Covid, wasn’t a fun time. An average pain rating of around 6-6.5, a couple days every month I’m totally bedridden, and a few vertigo episodes a week that makes walking next to impossible.

So how did everything change when the Fire Nation attacked?

Well, It Sure As Hell Ain’t A Good Time

Dealing with Long Covid is, well… not a good time. To put it mildly. 13/10 wouldn’t recommend. Do not try this at home.

It’s not as easy to get through every day as it used to be. These days, the average pain rating is around a 7-7.5. And that 1-1.5 points really makes a difference when it’s every single day. My default response for “how are you” at this point is merely “tired,” because that’s what I am all the time. Too tired to do anything beyond the bare minimum needed to function. And even there, sometimes I still can’t manage.

My lungs aren’t in terrible shape, and they’re certainly not as bad as we thought they’d be at first, but they’re never gonna make it back to 100%. But really, who needs completely functional lungs? I’m not a singer or a runner or really any kind of athlete (would golf work? Do you need to be able to breath well for golf?)

Then there’s my ADHD. Which has been under control for years, to the point where it didn’t actually get a diagnosis until about 4-ish years ago. But thanks to Long Covid, my brain is no longer capable of holding back the gates. Not just with the ADHD- the anxiety and depression are harder to keep a handle on, too. It’s like my brain’s ability to organize itself went from a 7 to a 3.

But the worst part is the flareups. Not only is my regular pain level now around a 7-7.5 and my fatigue levels high enough that “barely functional” is about the best I can do most days, but instead of maybe one or possibly two flareups a month, we’re now talking at least one per week. They’ll range anywhere from a few hours, to the current one has lasted over a week so far- towards the beginning of it, it was actually bad enough I ended up in the hospital when I fell and hit my head (I have a very hard head. It was not a hard bonk. Just enough to scramble the brains a bit. But when aren’t they scrambled?).

I don’t say any of this in hopes that y’all will feel sorry for me. I don’t like it when people do that. I just want to make sure y’all know just what having had Covid 5 months ago really means for my long-term health.

And I’m Not Even Dealing With Long Covid As Bad As Some.

Yeah, I’m having a very not-pleasant time dealing with Long Covid, but I know people who are in much worse shape than me. People whose lungs are totally shredded, much more than the easily winded that I get. Severe neurological damage causing CRPS-like symptoms. Difficulty walking, standing. I do know people who are literally bedridden at least 75% of the time because of this. It’s not a fun time.

And the worst part, like I said way back when, is we still don’t know exactly how all this works yet. Will things fade more over time? Will they get worse? Will future variants cause more long-term damage? Less? We don’t know. We won’t know for years.

So next time someone says Covid isn’t any worse than the flu, laugh at them (also, side note- the flu is very dangerous. Pre-Covid, an average of 12,000-52,000 Americans died from it every year). They don’t wanna get their vaccinations because they’re worried about the side effects? Does a fever and headache and tiredness that lasts a day or two really sound as bad as everything else I described? Nicki Minaj’s cousin’s friend with the swollen testicles probably isn’t your most reliable source, if we’re being honest. Listen to and trust the doctors, who are not being paid to lie to you, nor do they have any reason to want to- unlike the politicians and pundits who want to play the whole thing off as a farce peddled by the other team.

As much as dealing with Long Covid sucks, I’m still one of the lucky ones- I’m still alive. 6.5 million people worldwide (a little less than the population of Indiana, which would make it the 16th most populous of the 50 states, if Covid fatalities were a state) aren’t so lucky.

But hey, there’s a bright side- my TikTok will soon be up and running for real!

Seriously, though, that’s gonna be fun to see. Me? On TikTok? Who woulda thunk it.

On a more serious note, though-

I’ve Got A Book Coming Out!

It’ll be coming out likely sometime over this coming summer. It’s an exciting sci-fi adventure about the crew of a small ship sent behind enemy lines to try to stop an interstellar war. I’ll be posting updates as they come out, including exciting things like cover reveals and presales and all that jazz. Shortly before the release I’ll even post a short story prequel here on the blog for all y’all to read for free!

Right now all I can say is that I’m about halfway done with biggest stage of the project and am anticipating being able to move onto the next stage within the next couple weeks.

Well, that’s all for today.

Until next time,

Nick

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