As a previously healthy and semi-vital Long-Haul Covid sufferer, I’m asking myself several key questions these days:
- By the time experts know more about the long-term effects of this, am I going to be an irreversible pile of mush? Or worse, a dead pile of mush? Seriously, what’s happening to me?
- Wait. …Am I someone with chronic pain now?
I got sick with Covid back in March of 2020 and my symptoms were mostly neurological rather than respiratory, which is rare for Covid but definitely not unheard of. It started with a fever, extreme fatigue, muscle aches, chills and sweats, a sore throat, pain in my ribs, a complete loss of appetite, mental confusion, brain fog, and the worst headaches of my life.
I live in Barcelona, where EMT’s were forced to be stingy with their tests early on, unable to waste one on someone who could still breathe. I was never hospitalized, but I live with doctors who were absolutely positive we were dealing with Covid. For weeks, I slept all day and night, only waking up to eat a meal or two a day, go to the bathroom, or go to the window to clap for the medical workers with the rest of the neighborhood like my life might one day (very soon) depend on the upkeep of their morale.
It’s eleven months later and I wish I could say things are looking up. For the first five-to-six months, the symptoms all came and went together like waves. Every other week or so, I was totally fine and then I totally wasn’t. The periods in between the symptoms eventually got longer and longer, which seemed to indicate that I was getting better. Then, like magic, all the symptoms disappeared.
Except for the fatigue, the brain fog, and the headaches.
Those appear to be here to stay.
For the last five months, I’ve found that I still need 9–10 hours of sleep every night. I’ve been having a lot of trouble focusing. I sometimes can’t comprehend what I’m reading or hearing and I need it repeated several times. Then, of course, there’s the worst headaches of my life. Just… awful, awful headaches. Like my brain is swollen and trying to seep out through my eye sockets. If I turn my head too fast, searing-hot lightning strikes in an arch from the back of my head up to my eye.
For the last five months, I haven’t had a moment of being not in pain.
Some days are better than others. My baseline is at about a 4 on the pain scale, which means it’s there, it’s super distracting, but I’m tolerating it. Most evenings, the pain gets worse and jumps to around a 5 or 6 — strong, deep, piercing pain that makes it hard to think about anything else. I’ve taken to rubbing at my head with clawed fingers like I’m digging for something. My sanity, maybe.
It’s taken me a long time to write about this and part of the reason for that is I haven’t wanted to face it head-on (excuse the pun). I haven’t wanted to admit to myself that this may be my reality now. The mental hoops I’m jumping through just to get through the day are exhausting and the brain fog’s got me staring at my screen with total incomprehension some days. I haven’t felt normal in a long, long time and the sooner I can admit that to myself, the sooner I can get the word out.
Listen, I’m not an educated expert giving educated expert advice. I don’t have any idea of where to go from here. There are long-haul forums and plenty of advice out there, but a lot of it is contradictory. The big debate right now seems to be whether exercise is dangerous for long-haulers. We just don’t know enough yet.
The only thing I feel is within my power, at the moment, is to present my situation to you and hope that you take steps to avoid it. I’m going to try hard not to lecture you because I very recently wrote an article about letting go of my worry-rage around this whole pandemic and, therefore… I’ve let it go.
Forever and all the time.
What Happens to Our Love When It’s Filtered Through Grief
Processing 2020 in a cemetery so you don’t have to.
…I will say that I’m …disappointed.
It sucks that the concept of “Covid fatigue” is being used as an excuse for people to throw in-person birthday parties again despite the fact that infection rates are far higher than they were when we originally locked down back in March, new super-strains just dropped, hospitals and morgues are overrun, and people like me are sounding the alarm that “asymptomatic” and “dead” are two ends of a wide-ranging infection spectrum.
Being sick of Zoom isn’t Covid fatigue, ok? This is Covid fatigue. (I’m gesturing exhaustedly at my entire self.) Waking up at 4am to down a bunch of painkillers and crying over your work because your eye just started throbbing again and because your job is to think but thoughts don’t…. they just… nothing’s… is…
If you’ll indulge my scattered mind here for a moment, there’s this passage in a book I read recently that I can’t stop thinking about, even when my brain’s trying to murder me. I suppose my instinct, when I’m confused and hurting, is to look to the past. The answer’s not always back there, but glimpses of profundity often are, and I like those almost as much.
The Gray Notebook is a Spanish Flu-era diary, originally written in Catalan by Josep Pla in 1918.
In it, Pla’s just moved back to his hometown of Palafrugell, in the Catalan region of Spain, because his university in Barcelona had to shut down due to the pandemic. The second he gets home, dude’s constantly going to bars and brothels with his buddies and festivals and mass along with the entire rest of the town. He genuinely doesn’t appear to be aware of things like droplets, social distancing, and masks.
I looked into how that could be and it turns out it wasn’t because science hadn’t advanced to that level of awareness by that time. It was because local authorities, especially in small towns, refused to implement safety measures or educate the public.
Sounds archaic, I know. That would never happen today.
The passage I can’t stop thinking about is one of Josep’s journal entries from the Fall of 1918. It’s spooky, is what it is. It gives me goosebumps.
18 October, Friday.
Influenza is causing terrible devastation. Our family has had to split up to attend all the funerals. Marian de Linares’s was held in La Bisbal. In Palafrugell, an 18-year-old girl’s (a lovely child) in the S. family. I went to La Bisbal.
The crying could be heard from the street. Sobbing in houses and on stairways. A striking spectacle that contrasts with people’s silent mood — a mood that dips and sinks the second they hear that sobbing. These expressions of grief transform everything, even the countryside. Suddenly a man who had remained still, stiff, and dry-eyed shifts nervously and begins shedding tears.
The funeral of Sr. Linares was a highly emotional affair.
The small train takes us home in the evening, in the dim, murky carriage light. The engine sputters despairingly and sparks fly up from the chimney. The train is full. People sit in subdued silence. Those coming from market imitate those who’ve been to the funeral. If one imagines a train full of thinkers, this would be it. The brims of our hats cast shadows over our faces. What are we thinking? Nothing at all, I expect. The drama derives from the fact that there is so much here we cannot understand — so much that it renders the mechanics of our mind quite useless.”
As a previously healthy and semi-vital Long-Haul Covid sufferer, I’m asking:
Why are we still on this train?