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amethystina · 2 months

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A health update (and a general explanation of my long Covid)

So while I've been pretty open about living with long Covid, I realise I've never taken the time to explain what that actually means for me and my quality of living. It's a phrase I toss around but I can imagine it doesn't feel all that substantial to a lot of you.

So I figured that now that I'm feeling a bit better (more on that later) I should do so. Partly because I figure it will make it easier to understand why I sometimes have to disappear for weeks on end.

So, if you're interested, feel free to keep reading under the cut :)

But be warned: It's long and kind of whiny. But also ends on a high note! So there's that.

The first time I caught Covid was around Easter 2020, long before there were any vaccines, which meant that I was hit hard. But no matter how bad I felt during the illness itself, the aftermath has been ten times worse. I've been living with my long Covid symptoms ever since, so for four years now. They worsened for a couple of months when I caught Covid a second time in February 2021, but have otherwise held pretty steady during those four years.

A lot of people experience different symptoms with their long Covid and, sometimes, they'll change as the weeks and months go by. I actually had a very interesting couple of months during 2022 when my sense of smell just went completely whack and everything suddenly smelled differently than it should. Like, I could be smelling an apple but it did not smell like an apple. It was a weird time in my life.

Anyway. My most common symptoms are fatigue, fevers, joint pain, brain fog, memory issues, incoherent speech, and lowered blood circulation.

(The latter actually kickstarted the Raynaud's syndrome I have on my mother's side so now I struggle with fingers and feet that will occasionally go white, bloodless, and completely numb at random intervals. Fun times)

The fatigue and fevers are the worst by far. For the past four years, I have had exhaustion fevers between two to five times a week. Or every single day if I'm unlucky. It's very much tied to how much sleep I'm getting, how well I'm eating, and how many taxing things I do each day. I need eight hours of sleep to be functional and anything less than that will most likely mean I'll end up having a fever before the day is over.

Unfortunately, I've always had issues with my sleep so, on most nights, I don't get eight hours even if I try my absolute best. Sometimes it's because I wake up too early and can't fall back asleep and, sometimes — because my life sucks — it's because my fever is so high that I can't fall asleep. Cue the endless cycle of too little sleep and fevers.

Because one of the main issues with these exhaustion fevers — and what makes them so difficult to manage — is that there's no way to lower them. Medicine has no effect whatsoever. Once I have it, I just have to suffer through however many hours are left until I can sleep and hope that it'll be gone in the morning. Sometimes it is, sometimes it isn't.

And every day my energy level gets just a little bit lower and the fever a little bit higher. Some days, all I can do when I get home from work is to lie on the couch and stare at the wall because I'm too tired and in too much pain to even watch something. And, again, no amount of medicine helps.

It continues on like this for a while and, every third or fourth month or so, the strain eventually becomes too much and I fall ill. My body simply shuts down from the continued stress and exhaustion, to the point where I can barely get out of bed. And, usually, I can feel it coming. On top of the fevers, I start coughing, then get a headache, and then my nose gets stuffy. And, by that time, I know I have about two to four days before I get sick. It's so accurate that my coworkers have learned that when I give the sign, they have to tell me whatever tasks they need to be finished within the near future since I'll probably be out of commission for one to two weeks.

But I eventually recover, go back to work, and so the cycle starts again. And again. And again. And again.

For four years.

All of this has, unsurprisingly, affected my quality of life to a pretty significant degree. I can barely work, let alone spend time doing any of my hobbies. I can't really travel anymore and, if I do, I'll get sick from the exhaustion. Even the 50-minute commute to the office (which I have to do three times a week) usually results in a fever before the day is over.

This inability to travel was how I ended up missing my maternal granddad's funeral. My shitty relatives didn't tell us the date for when he would be buried until there were only two days left and even if I could have put myself on an overnight train to get there, I knew I would be in no shape to actually be at the funeral if I did. So I couldn't go.

I did go to sit with my paternal grandmother as she was dying but, as expected, I got sick and couldn't return to work for a couple of days afterwards.

I also have to skip most birthday celebrations and any events happening on weekdays since I'm usually too feverish or won't manage the required trip to get there. My life has shrunk so much I barely recognise it anymore. I don't recognise myself. I used to be one of those people who could do a million things at the same time and somehow complete all of them. I was firm, organised, and efficient.

And now I'm not.

(... or, well, technically I am — at least compared to many others — but not compared to how I used to be xD)

Point being, a lot of things have changed and I don't like it. But, with that said, I'm also well aware that I'm lucky to be alive and I'm fortunate enough to have a stable job and a roof over my head. So, all things considered, I'm still doing pretty well.

But I also can't lie and say that this hasn't affected me in a deep and fundamental way. My life has changed and, right now, I don't know if it'll ever return to what I used to consider normal. And dealing with that knowledge — and the grief and fear that comes with it — hasn't been easy. I have cried ugly, self-pitying tears over this many, many times. It's frustrating to have no control over what my body does and to constantly have to be careful of what I do so I don't exhaust myself. I am furious that this happened to me.

But, after four years, there's also a certain amount of acceptance. And while I'm annoyed by my new limitations, I try my best not to feel too sorry for myself. Instead, I try to adapt as best I can, even if I might not always do it gracefully.

That does mean that I sometimes push myself more than I should, though. Because, if I didn't, I wouldn't never produce anything. As depressing as it is to admit, everything I've given you in the past four years has been while I was sick. I don't think a single chapter I've written or drawing I've made has been untouched by this. I've become an expert at writing, editing, and drawing even with a fever.

That doesn't mean I regret it, though — quite the opposite. I think that if I hadn't had a reason to write and draw, I would have felt even worse. A lof of the time, the excitement I feel when I'm able to post a chapter or show off a drawing I've made has been the highlight of my week. It's an accomplishment.

But, that said, it's still hard. Writing in particular. It requires a level of brainpower I can't reach when the fevers are too bad. And so, sometimes, I just can't. I literally just can't.

And, back in January, as I was trying to edit chapter 39 of Who Holds the Devil, I honestly pushed myself too hard. I was so determined to finish it that I didn't let myself see just how bad I was feeling — not at all helped by how emotionally draining the content of the chapter was.

It was only once I finished the chapter and posted it that I realised how absolutely wretched I felt. Not because of the chapter itself, but my lack of compassion for myself, I guess? Because the fevers were bad, I was barely sleeping, and I was both mentally and physically exhausted. And, what was worse, I realised that I was displaying depression symptoms I hadn't seen in over ten years.

All of a sudden, I got annoyed as soon as a minor inconvenience appeared. Everything people said to me was dissected into its tiniest component. I feared that people were secretly hating me. I couldn't meet people's eyes anymore when I was talking to them. I didn't realise I was just sitting there, staring at a wall, until several minutes had already passed.

And, as the final nail in the coffin, I stopped talking about how I was feeling.

And that, right there, is my last warning that I need to do something — always has been, ever since I was a teenager. When I clam up completely, refusing to admit to the people around me that I'm feeling bad, that's when I'm about to spiral.

So, the very next day, I went to my boss and told her that I'm getting burnt out and I need to do something NOW or this was going to turn ugly real soon. Thankfully, my boss is amazing and, after a doctor's visit, I was put on partial sick leave. Right now, I'm working six hours a day instead of eight and, let me tell you, I'm thriving.

Or, well, as much as I can while still having long Covid.

I'm almost angry at how much better I feel because, if I had known, I would have done this a lot sooner. I actually have energy now! I've only had a fever about four times in a little over a month! That's insane! It used to be four a week!

So yeah. I'm feeling better than I have in a long time. The downside is that the partial sick leave is still only temporary and there are no guarantees that I'll be able to keep it. Though, if need be, I'll just have to ask my boss to rewrite my contract and change the amount of hours I work because, man, I don't ever want to go back considering how much better and happier I feel. I'm not exaggerating when I say that I feel like I've gotten my life back. It's not quite the same as before, but close enough to it that I kind of want to cry again — but happy tears this time.

And so I've spent the past couple of weeks just... living? When, before that, it felt like I was merely existing. I've been drawing a lot since that helps with the depression symptoms (which are almost completely gone, thank god) but writing has been harder. Possibly because I forced myself to do it during a time when I felt really, really bad and now I'm instinctively trying to shy away from it. But, since I know that's just my mind playing tricks on me, I'm going to give it another try this weekend. I want to write and I miss the stories I'm working on. And, hopefully, since I'm feeling a bit better, I can maybe get back to a more structured uploading schedule. But we'll see. As always, I can't make any promises.

But that's about it, I guess? I'm feeling better and, since I am, I've been doing a lot of things that I wasn't able to before (like taking walks — I take a lot of walks). And I'm still trying to figure out my new routine now that I work less. And while I still get sick sometimes (I am right now, in fact, due to lack of sleep on Tuesday night) I always find my way back eventually.

So yeah. If you've read this far, thank you so much for your patience 💜 I admit that I don't really enjoy writing things like these since it feels like I'm whining — I was very much raised not to take up space or complain when things are difficult (an unfortunate side effect to being the middle child with two disabled, high-maintenance siblings) — but I also prefer honesty and transparency. And I feel a little guilty since there are times when I've given pretty harsh responses when people question why I'm sick all the time or why I don't upload chapters as often as I used to, but without actually explaining why. So I guess it's time to be honest?

And the truth is that I've been constantly sick for the past four years. Not only due to my long Covid, but also the emotional and psychological toll of all the loss, grief, and pain I've been through. These past four years have been rough.

But I'm not saying that to gain pity or make excuses. I actually think I've done pretty well considering just how hindered I've been. I've improved my drawings so much and have written... god knows how many words. I'm honestly kind of scared to check xD But it has to be over 600k by now, maybe closer to 700k.

I think my only regret is that I haven't been able to engage with you all to the extent I would want. I wish I could be a more active and enthusiastic participant in fandom — to seek you out, hold conversations, and give you all even a fraction of the attention you've given me. I feel like I don't offer you nearly enough.

But I also know that I have to accept my own limitations. So, for now, we'll have to settle for whatever I can give, even if it's less than I would want. But I will keep on creating, trust me on that, because I'm stubborn as fuck and even if my pace is slower, I'm still determined to finish what I start.

And that's the note I want to end this on. I have suffered, yes — more so than I may have expressed to you all — but I've still managed to create some beautiful things. And while I mourn who I used to be and the fact that some of you have never known me at my best, I don't think the me I am right now is all that terrible. Do I want things to change? Yes, definitely. But do I want to change the choices I've made and the things I've accomplished in the past four years? No, I can't say that I do. I'm proud of what I've done, especially considering my limitations.

And, if you're reading this, thank you so, so much for your kindness, compassion, and support. Some of you are old friends while others of you are new, but I am grateful to every single one of you. You have made these past four years more bearable. You have made it easier to keep fighting. You have made it worth it.

Thank you 💜

#Amethystina and Life #I don't really know what to tag this as #A rant?#A rambling?#An explanation?#It's just a lot I guess #And I admit I'm still hesitating whether to post this or not #I don't like talking about things like this #Or draw attention to it might be a better way to put it #But yeah #It's here if you want to read it #But do so at your own risk #Now I'm going to bed #And might just pretend I never wrote this because I feel awkward and embarrassed x'D

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placesyoucallhome · 3 months

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okay so where have I been? Actually sick, but for the most part it's all the same sick, all the same sick as I've been since 2020, it just got worse.

ranting under a cut because I'm just venting at this point-

I got covid in like, February of 2020, early early, before doctors even thought covid was in my state early and sure as hell weren't diagnosing it. And to be fair, I didn't even got in, or bother telling anyone, because I thought it was a little headcold, barely coughed, just sniffly and tired, though the lack of taste was... odd. I didn't think anything of it, thought I just lost my sense of smell due to sniffles.

Then I didn't ever get better.

Honestly I thought I was losing my mind, I suddenly was sleeping 14+ hours a day, making dinner was an ordeal because I was exhausting just standing for minutes at a time, I couldn't work, I had no idea what was wrong with me. I didn't connect any dots until months later when my taste finally came back, that that was a symptom, and that for some people it just never gets better.

So for a while that's all I have to work with, there's no relief, no cure. Not until the vaccine anyways, and some people with long covid find relief, symptoms lessening or even going away entirely! I'm one of those, thank fuck, my fatigue lessens enough that I can get part time work again at least. And that's where I'm at for a while. I'm not at where I was before, but man, at least it's something.

Cut to a bit over a month ago, I get another cold, and... I don't recover. I'm shoved right back to where I was in 2020, and now with vertigo enough to make me nauseous at the drop of a hat and brain fog that makes thinking feel like a sisyphusian ordeal, fun! At least it's not loss of taste again. I sort out the veritgo with some supplements, but my fatigue and and the worst brain fog of my life are lingering, and at this point I'm gods damn desperate for this to not be reality for the next handful of years or more. SO. Research.

I try a few options, not much works, not until I stumble on a side blurb somewhere about antihistamines helping. I look some more, some people are completely reset to normal on them! Fuckin I might as well try right? I've never taken claritin I don't have allergies how would I have known?

And it fucking works

It was like night and day after one dose! No brainfog! My energy slowly comes back too! No vertigo! Holy shit!

Except my sinuses are actively killing me. To be fair, my sinuses never actually worked properly, they just don't drain. And now it feels like there is a solid mass of mucus in there that isn't budging, and my throat is raw because it's making me snore on top of that. Cool. cool cool cool. Apparently there's a known issue of antihistamines causing mucus in the sinuses to just not hydrate and essentially gunk up everything.

And that's where I'm at. My choices are- keep taking antihistamines and be able to stay away and think and just deal with the constant sinus migraines (or take sinus meds constantly on top of all that), OR- drop the antihistamines and deal with fatigue and brainfog, I can then consider a low histamine diet. What is a low histamine diet? Fucking torture. It's not even terribly healthy because it cuts out so many nutrients, and you aren't supposed to be on it for more than a month or so at a time, and I'd need to be on it for 6.

What is a low histamine diet? Amongst other things, no spices, no deli/coldcut meats, no spinach, no tomatoes, no cheese, no SOY SAUCE ARE YOU KIDDING ME? I cannot stress how much my diet revolves around tomatoes and soy especially, I wouldn't be allowed anything savory or spiced or fermented for SIX MONTHS.

So it's not looking likely.

So I'm at an impasse, I'm not sure what I'm gonna do about it yet. probably ease off the claritin for a while and see if my sinuses recover and try again?

Anyways I had mac and cheese tonight and only cried a little bit.

#long covid #which is the tl;dr about it #I just got tossed into a spiral about it for the last month

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pandemic-info · 2 years

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I teach patho to nursing students. Every semester since spring of 2020, I have taught about Covid. And every semester to have to change my lecture to keep up with new data. I was teaching Covid this semester and I told them that if nothing else, understand the science.

I explained how Covid attaches to ACE2 receptors in the nose, throat, heart, kidneys, and gut first. That’s why you see a runny nose, sore throat, myocarditis and acute kidney failure first. There aren’t as many ACE 2 receptors in the lungs, so Covid hits the lungs later.

That’s why you see lag time between initial infection and respiratory symptoms. More importantly, I explained that Covid is not just a lung disease, it is a massive systemic inflammatory response to the virus. Covid also upregulates a protein called bradykinin, causing clots.

If nothing else, I told them to think of Covid as huge inflammatory process that causes injury, scarring and clots to form everywhere. That’s why we are seeing so many strokes, MIs, weird liver failure in peds, bowel ischemia, and long Covid. It all points to chronic inflammation. There is no immunity as the variants keep changing, kind of like the flu, which is why we get flu shots every year. We’ve just let this run rampant, so a slew of Covid variants keep popping up, rendering treatments less effective.

The worst part of this was when one student said that their parents had gotten Covid and asked how to keep them safe from the complications. Another student piped in and said she had Covid 3 times and was she at risk too? It was my moment of reckoning. I realized that there wasn’t much I could say except to protect themselves with masks, vaccinations, and to try not to get Covid again. I told them that if they had Covid, they were at higher risk of long Covid and lantern complications. There was nothing to be done.

Except to protect themselves going forward. After that there was silence. One of my students then said how disappointed in government and public health leaders he was. Another told me she was disappointed in her professors and her school for not being more vigilant.

I told them that as long as they understood the patho of the disease, they could guard against misinformation. I told them to educate their families and patients about the science, not the rumors. This left me feeling so sad. What have we done?

If I can teach this to first semester nursing students, why couldn’t we have taught this to everyone? People do not understand the disease and no one bothers to explain it. Perhaps that’s why we have failed so miserably.

We need to backtrack and explain the disease before we start talking about immunity debt (a non issue) and endemicity. My students are so young. It’s heartbreaking.

via Kali

#covid #long covid #science #pathology #covid is vascular

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quill-of-thoth · 1 year

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Letters from Watson: The Dying Detective

Crimes in context:

Medical History Sorry in advance for the medical grossness. Please skip to the cut if you never want to see the words open sores ever again. First, to piece together Culverton Smith's crimes against humanity and also the murder. Culverton Smith appears to have gone to Sumatra to make a living planting, with the labor primarily done by indentured servants or low wage workers, possibly slaves, from the local population. (I say slaves because although slavery was not officially legal in England or it's colonies at this time, there have been historically a lot of situations that are essentially slavery with some thin veneer of justification, especially when you're occupying a country, and you can make any law you want about requiring people to work for you for nothing, or the next thing to nothing.) To top this off, he was either experimenting on these workers with his favorite tropical disease, or using them to incubate it so that he could keep a stock of the infectious material on hand.

This is how Smallpox stock used to be carried overseas: A chain of people would be infected with a diluted or weakened virus. When one person's symptoms would start to wane, the fluids from their open sore would be transferred via a cut in the skin to the next person in line, who would carry the infection until they began to recover. In the transfer of smallpox for the purposes of creating vaccinations and inoculations, these were volunteers. The carriers also benefitted in many cases from being inoculated in the process, since these cases of smallpox were milder than the wild variants, and being a carrier would give you about the same immunity as an inoculation of the day. Now, we have refrigeration, glycerol stocks, the ability to use only portions of viruses (usually the proteins in their outer shell) in vaccines and most importantly, sterile fucking needles. I will never be leaving this century, even though we do have covid. All this to say that Culverton Smith can rot in hell, but I also wanted to cover Watson: why did he write this case up?

Watson's Writing

For those of you who have made it this far into my reread without knowing what is to come: The Final Problem, in which Holmes dies, will occur in April of 1891. All Holmes short stories, and the remaining two novels, were published after this date. Presuming that my date of 1890 is correct for this story (which we can, and will, revisit later as it was NOT my initial impression of the timeline), we can presume that Watson had reasons for not publishing it in his initial collection of 24 short stories, likely grief. Thinking back on this time would have been extremely painful from a variety of directions: as the months go on and on he's further convinced that Holmes is not faking it this time, and Watson probably desperately wished that he was.

Then too, despite the fact that Watson closes the story abruptly without describing his emotions at Holmes' deception, we can deduce them. He's insulted - despite Holmes' words that he never doubted his professional abilities, just his ability to lie, Holmes still disparaged him. He's angry - Holmes has shut him out of his plans and made him believe for the better part of three or four hours that he was about to lose his best friend. He's frustrated because despite the illness being an act Holmes is still harming himself with his denial of his body's limits, i.e. that a human can die if they're dehydrated for three days, and also his casual use of poisons. Belladonna, it turns out, is not good for your eyes, which is why we don't use it anymore, aside from the hideous toxicity.

Watson has been a prop in Holmes' stagings of case conclusions before, but there's a vast difference between being framed for breaking a bowl and playing along, and being deceived, berated, insulted, and isolated to ensure that you play the part correctly. There is a definite possibility that they did have a fight over this - even Baring-Gould's timeline has a gap of over a month between this and the next recorded case. It isn't an unusual amount of time, as no doubt Holmes did not always have cases that were cinematic enough to make the cut, and also Watson had a business and a household to attend to, but it's enough time for them to pointedly not see each other, and for Watson to forgive him and come around for a post Christmas visit.

Ask a microbiologist: WTF is Smith doing with his jars of bacteria?

Hello Tumblr, I grow germs for a living. And based on the description of Smith's lab / study I have a few questions, namely, how is he storing his bacteria? Based on the jars and bottles that he refers to as his "prisons" he's keeping them at uncontrolled room temperature. This probably tracks with best practice at this time, as refrigeration was based on putting things in a box with ice, and iirc although bacteria were known to be the drivers of spoilage, the idea that they would grow, and die, slower at lower temperatures was not part of professional microbiology at the time. Also based on Smith's own words, he's storing the bacterial colonies in agar, which matches with modern methods... sort of. Agar is solid at room temperature, and when it's liquid (at about 100 Celsius), it's too hot for most bacteria to survive in. This is important because the description of these jars and bottles appears to imply that they are filled with solidified agar, and there's really no reason Smith needs a full jar of solid agar to keep his bacteria in: when we keep bacteria in a liquid it's called a broth and does not have agar in it, because we want it to remain a liquid. Yes, Smith could be doing a fairly standard setup where he pours a quarter inch of agar into a vessel and, when the agar is solid, "plates" bacteria on top of it. The description does not unambiguously rule it out. But if he's trying to preserve his bacteria by entombing them in solid agar, and then melting the agar to retrieve them, it's a lot funnier. Mostly because it would mean that his pet bioweapon from Sumatra isn't viable anymore.

#Letters from Watson #The Dying Detective #Crimes in Context #crimes against humanity again I'm afraid #human experimentation #self poisoning for reasons of being an extreme dumbass #look another story I coincidentally have professional knowledge vaguely related to

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anyroads · 11 months

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This collection of articles on Long Covid popped up in my browser this morning. Please read at least one of them.

I don't even know where to start putting all the frustration and anxiety caused by knowing how much vulnerable people and disability rights activists begged everyone not to forget them when Covid protections started getting rolled back. Everyone wanted to get back to normal and didn't care who got left behind. And now people are still getting left behind because most people don't want to observe basic safety measures that would take so little effort (masking in public places like supermarkets and public transit! vaccine availability! I'll pay! just let me have one every six months!). Which means people are still getting infected with Covid, and many of them are still developing Long Covid, except now so few people are even aware of it as a condition (some have actually forgotten about it even though they heard of it a year or two ago) that many aren't seeking help, and many who do simply don't have access.

Vulnerable people are worse off now than a year ago, because most countries have rolled back the safety measures that protected them, and they aren't receiving compensation for the fact that every day life is dangerous for them. This limits access to work opportunities, not to mention social lives.

So, in the interest of general safety, here's a brief primer on how Covid works that can inform your own safety steps:

Ventilation is your friend. Covid travels best in enclosed, unventilated spaces and is the most limited in its ability to infect outdoors. Outdoor events and gatherings are safest for your vulnerable friends, as long as they aren't too crowded. If you aren't infectious then it makes little sense for you to wear a mask outdoors unless you're in a crowded space. I still see people wearing masks on the street and then taking them off when they get on a bus. This is the opposite of what you should be doing.

Masks protect others from you more than they protect you. Which means that it's not enough for vulnerable people to wear a mask in enclosed spaces to protect themselves, others need to wear one too.

Viral load is a huge factor in infection severity. The less of the virus a person is exposed to, the more of a chance their immune system stands. This idea that "you're going to get covid anyway, so you might as well not worry" doesn't take into account that viral load matters. If an infectious person wearing a face mask breathes on someone, they'll shed much less virus than if they stick their tongue in that person's mouth or even just breathe on them without a mask. Basic safety measures can make the difference between a low-level infection and hospitalization for vulnerable people. It can also make the difference between low-level long covid symptoms and debilitating long covid.

Covid has a 48 hour incubation period. This means the virus takes 48 hours to settle in before you become infectious, once you've been infected with it yourself. If you think you've been exposed, start testing and masking after this period ends (this means if you went to a party where someone had covid, you start the 48 hour count from the beginning of the party, not from the time you left).

If you think you've been exposed, test and mask for 5 days once you start to do so. If you keep testing negative and don't have symptoms at the end of the 5 days, most research indicates you're safe and not infectious. This means it's been a full week since your potential exposure because 48 hrs + 5 days = 7 days.

If you test positive, even if you have no symptoms, test, mask, and try to stay away from others until you test negative. If you test negative but have symptoms, take a few days to keep testing, masking, and stay away from others. Covid can take a few days to show up on a test even if you have symptoms.

One vaccination isn't enough. The covid vaccines are effective for 4-6 months. After that, you need a booster. Please don't tell people you're vaccinated and safe if your last vax was more than six months ago, you're misleading them, even if unintentionally. Vaccination also doesn't mean you can't still pass on the virus if you get it, even if you have no symptoms (this is true for the flu as well).

Please keep protecting vulnerable and disabled people and advocating for them. Happy disability pride month.

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schmergo · 2 years

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I am just wondering about the sustainability of... doing basically anything around here. Companies are requiring employees to return to work (in many cases, eliminating telework options that existed PRE-pandemic), mask and vaccine mandates are being rolled back, and everything’s open again despite high COVID numbers.

But at the same time, recent studies show that up to 1 in 5 adult COVID survivors develops symptoms of Long Covid. That’s possibly millions of people developing chronic illness symptoms. That sounds difficult for both the healthcare system to manage AND to have any kind of steady, reliable, functional workplace if your coworkers keep being absent due to sickness and then developing long-lasting symptoms after they return (or quitting due to them).

Even for younger people, for whom it’s often not as bad, I’m seeing so many people get hit with post-viral fatigue and other symptoms lingering for a month or more that remind me a lot of mono. Imagine that like half of your friend group had mono... but unlike mono, kept getting infected again and again (I know many fully vaxxed and boosted people who’ve had COVID multiple times due to different variants). People who have always been super healthy and fit getting exhausted easily or developing new daily headaches who never had them before, struggling with ‘brain fog’ making it difficult to work. These are the young, fit ones.

If there are NO mitigation measures in place and we’re just expected to accept that we’re “all going to get COVID sooner or later,” that ignores the fact that people can get it again and again as each new variant arises and immunity wanes. Because everyone seems to agree that COVID isn’t going away but will just continue to mutate and change into new variants, this seems pretty risky, constantly rolling the dice on getting a virus that may cause LASTING health problems in 20% of people. Especially since so many jobs provide little to no health benefits and super low salaries, basically keeping people from effectively managing chronic illnesses that require frequent absences and medical appointments. I guess they think workers are replaceable, but how long before they burn through the supply?

But on the other hand, it’s also not sustainable to just stay in your room with no human contact for the entire rest of your life. I was super cautious for the first 2 years of the pandemic and now I’m finally doing indoor socialization with vaccinated friends and family again (though still not going into indoor public places like restaurants or movie theatres and still order things online rather than going into stores) because if things are never going to get any better, I don’t know how much longer I can wait. I guess I would rather develop lifelong chronic illness from making lifelong memories celebrating Christmas with my family than running errands at Home Depot.

I genuinely don’t know how long all of this is going to last before the widespread infections and chronic symptoms really start messing with... any industry you can possibly imagine. It seems like everyone is experiencing labor shortages already, and that’s only going to grow from here. Yet it’s hard to find anyone caring even a LITTLE about this. I can’t even talk to friends and loved ones about this because they just start trying to comfort me with the bright side of the COVID situation (”Omicron is less deadly! More people are vaccinated now! The chances of young people dying are vanishingly small!”), when those aren’t the things I’m worried about at all.

When I was 23, something weird happened to my body and I can’t quite say exactly what caused it, because it was a perfect storm. I worked a busy, stressful, physically demanding job at a preschool, and I was working about 10-12 hours a day because I was covering a boss on paternity leave. It was a cold, dark, snowy winter and due to the long work hours, I virtually never saw the sun, so it’s possible a Vitamin D deficiency played a role here, or psychosomatic symptoms caused by stress and anxiety, or just plain old repetitive strain on my body from the long hours. I was also diagnosed with a mild underlying condition during all this-- what is now known as Hypermobility Spectrum Disorder. I’ve always had loose, overly flexible joints, but it never caused me serious problems, just made it a little easier for me to get injured than other people and meant I got worn out a little more easily. Things were never bad enough for me to seek treatment until what happened to me that winter, and have never been as bad since.

But it all started with a cold. A weird bad cold that started like any other cold (and lord knows I was always getting colds working at the preschool) but quickly involved joint pain and weakness and tingly numbness in my hands and wrists, then spreading to the rest of my body over the course of a few weeks. I was so fatigued that all I could do after work was lie in bed. I could hardly make it through the work day. My whole body ached and I could barely do anything without exacerbating my constant pain.

I thought I must have mono. I tested negative for that and 11 other things. The only thing I was diagnosed with during my Extensive, Expensive Journey was hypermobility. My doctor said, “It’s probably just a virus,” which could mean anything. But I felt like a ghost of my former self for about 4 months and still had lingering symptoms for almost a year. Things went downhill so fast that I remember looking at a photo of myself doing a cartwheel two months before and crying because I couldn’t imagine ever doing a cartwheel again (which fortunately wasn’t true-- I have no problem doing cartwheels now at age 30). I eventually quit that job and got a less physically demanding office job. The symptoms never came back to the same degree, and I’ll never know what really caused it, but it wouldn’t surprise me if some kind of post-viral malaise played a role there. Even little colds can set off all kinds of storms, let alone a new virus.

When I hear about people with Long COVID, I imagine a workforce full of people who feel the way I felt when I was 23. Can you? I’m not proposing any kind of solution here or saying, “Here’s what I think people should do about it,” so I’m sorry for the gloomy post, but when people ask me why I’m still worried about COVID-19 after all of this time and my multiple vaccinations... this is why.

#COVID #COVID-19 #health

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itsbeenclaireified · 1 year

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Y’all it’s been a whirlwind.

Let’s start with a small update, I went to Japan and it was amazing. Highly recommend! It was very easy to navigate around and everyone was very nice to us tourists.

Maybe I’ll make another post with just some pictures because it was so pretty and wonderful. There were however some challenges: we had travel delays because of a typhoon and then about half way thru the trip I came down with what I was obviously hoping was hayfever and upon testing at home was Covid.

My mom was also struggling the first half of the trip with like…things not meeting her expectations? And admittedly our tour guide was not doing great work with communicating or organizing or honestly even counting our too big group. So she wasn’t eating a lot and then there was a day she snapped at me, and while later she apologized it was not for snapping at me. It was because she thought she had embarrassed me when she yelled at the tour guide. But then I got sick and her mood improved! Which is always sort of a mindfuck, but it also was nice to not spend my mental energy worrying if she was having fun on her dream trip.

So yeah, I came home and while I was feeling better I had wanted to go into my office to meet my coworker’s baby. And because I was congested I was like, I should test just in case. Even if it had been negative I would have worn a mask and stayed back but it was sort of a shock to be positive. Because denial is a great thing and while there had been a single day that I had the same body aches I had after I got my vaccine…I thought it made since because we had spend like 6 hrs on the cement floor of the train station because of delays. But nope, it was Covid.

So I came home to a single day of work and was like hey guys maybe I can’t go on this business trip next week to Kansas. Which I warned them before the trip too and everyone was like nah it’ll be fine. And then BOOM I’m positive and I’m like uhhh guys idk that I will be allowed into hospital to watch this procedure because of the vid, can someone else go? Crickets.

And then a lot of “oh well policy says you’ll be at day 10 so you should be fine” and “let’s just play it by ear” etc. and lucky now I have tested negative twice and also my symptoms are almost completely resolved. But I can only thank myself for completely resting all weekend to get there.

Like…only got 500 steps total on Friday rested. And then I had to be like is my back stiff because I’m sick? Or is my back stiff because I haven’t moved in literal days? And am I tired because of jet lag? Or am I tired because of Covid? Or traveling? Or the long day at work? And we’ll literally never know.

Which also, I used this app called Timeshifter I saw on TikTok and it worked GREAT! I felt very little jet lag. Or at least not the type of jet lag that made me drag my feet and not want to do things.

So catch me in Wichita tonight, and being sad not to be home with my kitty.

My adorable nurse over the weekend.

And an amuse bouche of photos from Japan.

#claireified #personal #life update

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liu-lang · 2 years

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hello i'm still alive, still recuperating.

i started to having a sore throat on sunday, july 10. this was how my covid during the december 2021 omicron wave started too. but since i already had covid, i didn't think anything of it.

i kept going to work like normal, eating cough drops. i got a pcr and rapid test from a tent outside work on monday, july 11 and it came back negative, i felt relieved. okay, maybe this is just a bad sore throat. by tuesday, july 12 i had a runny nose.

i woke up with chest pain that progressively got worse on wednesday, july 13. i also always have intermittent chest pain (like my whole life) so i didn't think much of it. i start to develop a cough on this day too. after work, i get another pcr and rapid test at a tent. i decide to go to urgent care for chest pain so i walk like 15 minutes to a citymd. by the time i get to citymd, i have my rapid test results, it says negative. i go in and explain my symptoms, i show the medical assistant my negative covid results from the tent test i took not even 1 hour ago. he seems chill about it, gives me a covid test just because and says he will do the strep test after.

(i get the PCR tent test from july 13 back the next day and that one comes back positive)

after 15 minutes he comes back and looks at my covid test and says "oh no you're positive" and he promptly leaves the appointment room and says a doctor will come see me. i am like super confused at this point but also this is familiar to me since this is exactly how my omicron covid diagnosis happened where my test at pharmacy/tents were all negative and i only got positive tests at urgent care.

the doctor comes in, he asks about my symptoms, when was the onset, what vaccines i have (all 3 moderna) and my prior medical history. i talk about my congential heart defects and he says he will give me paxlovid since i'm high risk and he implores me to make an appointment with a cardiologist. he tells me to watch for worsening symptoms especially fever or shortness of breath.

then the real nightmare begins. at this point, i am in midtown manhattan. i tell them to send the rx to the rite aid by my jackson heights apt since it's really close and all i wanna do is take the meds and sleep. i take the 7 train back home. i walk to the rite aid and they say they don't carry paxlovid. i'm confused. the pharmacist calls like 3 other rite aids in the area. no paxlovid - why no paxlovid in a densely populated neighbourhood with low income working class immigrants ?? the only other rite aid i can think of is the one by my ridgewood apartment. so i tell them to call and ofc they have it there. so then i have to go all the way back to ridgewood - i had to take 3 trains. i fetch the paxlovid and then i commute back to jackson heights. by this time, it's like after 20h - it literally took me over 5 hours to get the medicine i need. apparently you can search at pharmacy's websites to see what medicines they have in stock but the last stock date was 2 or 3 days before so who knows if they still had the medicine by then. how does this work ?

anyway, i didn't want to take chances and i had to do stuff at my old ridgewood apartment anyway. i take the paxlovid and am confused by the bitter metallic taste in my mouth. i learn about paxlovid mouth for the first time. it's major yucks but i'm still super grateful to have access to it even though i nearly passed out commuting to get this medicine.

i've been quarantining at home by myself. we have overlapping leases btwn the ridgewood place and this jackson heights place so the moment i texted my roommate i tested positive, she went to the ridgewood place. i haven't seen her in 5 days. CDC says 5 days quarantine but my job wants 10 days and a negative PCR test for my entry pass to be activated again and i can return. i have two at home covid test, i wonder if i should test a little before the 10 days or just wait. i think the paxlovid stopped my symptoms from progressing to something worse but it doesn't feel like it shortened the duration of my symptoms. omicron covid gave me really painful body aches and fever - this time i don't have either of those but my throat feels like i'm swallowing glass, i have a gross-sounding cough, nasal congestion and migraines. i have a high tolerance for heat (grew up in sg at the equator) but it doesn't help to live in a 5th floor walk up in the middle of summer with no ac. i think that contributed to my migranes. i haven't put up curtains in my room so once the sun's up my room would get unrelenting direct sunlight and i felt like i was being boiled alive. i'm also extremely fatigued. every time i got up to walk down the hallway, it felt like i was a hot air balloon that had been shot down and was slowly deflating and descending from the sky. my heartrate is consistently over 100 with the highest being like 130.

anyway can't believe i'm only half way through quarantine - i haven't seen anyone else in a week. i wake up and it takes me awhile to rmbr what day it is. i feel like my brain fog is very bad - this doesn't bode well for all the reading/learning i meant to do over the summer to prepare for year 2 of grad school.

on the plus side this is the last day of taking paxlovid - it’s been so disgusting tt I’ve barely been able to eat anything without instinctively retching right after. I did see this article where someone claimed cinnamon candy helped them - it’s too late for me but maybe someone else might find this helpful

#personal #nyc move #grad school #covid19

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avewity-owo · 2 years

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Aid request below

These last two weeks I’ve been sick with strep or tonsillitis, (couldn’t be sure since the symptoms are super similar and I couldn’t go to a doctor) so I’ve been quarantined in my bedroom away from my spouse so they wouldn’t get sick. But I recently have been feeling better we played it safe and waited four days after all my symptoms went away to stop my quarantine and actually be in the same space. But since the universe hates me, just in time for me to get over whatever it was and get out of quarantine my spouse test positive for COVID!!!

Which is awful on its own because Covid is an awful virus, but the last two nights I was well enough to sleep in the same bed as them so I’ve also been exposed now as well. We’ve both been vaccinated so hopefully they’re not going to be too sick from it. But I also have a lot of risk factors for Covid being really dangerous for me. I’ve taken a test and for now I’m negative. Now we both have to go back into quarantine to make sure.

Because I got sick before we could do another grocery run and since I do the cooking and grocery planning; we went through almost all of the food we had stored and any readymade/frozen meals we had. We have no money for food and my spouse is the one who brings in an income. They don’t get sick pay because they work as an independent contractor and only get paid for hours they work so I have no idea what we’re going to do. I’ve survived off of little before but I don’t think I can stretch four packs of ramen over a week or more depending on how long it takes for him to feel better.

We have enough to pay bills for the car/insurance and rent/utilities, but no money for food on top of the bills. I’ll figure something out somehow but If you’d like to help I’d appreciate anything you could offer.

Venmo: averity-owo

PayPal: @avewity

#mutual aid #anything helps #signal boost

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talkingtomyhouseplants · 1 year

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California Rainstorms

Like the herbs, we gotta be strong to regrow, flexible to survive storms/weather and gorgeous for positive vibes and healing!

Do you see how much they've grown since the time I pruned them all. 🌿 Herbs have always fascinated me and their millions of uses. My next step is to explore herbs tinctures and oils, I already use them for cooking, cocktails, tea, salads and popurri.

This week two years ago was my dad's final time at the hospital. I remember continuesly telling my older sister that everything was going to be ok, that we needed to stay positive. My dad's wife called because she needed to decide if my dad was going to the ventilator or not. He went to the ventilator and that's when I knew... Not many make out of the ventilator, at least not at the peak of COVID before vaccines came out a few months later.

This week two years ago was the worse. Work was draining and stressful. News were so negative, not just about COVID deaths and hospital collapsing (In Guatemala they literally had people on the floor because there was no space). But also all the ridiculous political circus, racism and the Jan 6th attack, the whole vibe was insane. That week hit me deep and hard! That week I realized I had spoken to my dad consciously for the last time a couple of days before going to the ventilator.

One fucking month we had to suffer since he showed symptoms. So many mistakes that our medical systems made. Why weren't vaccines out faster? A few months earlier and he might still be alive. When they went to the hospital the first time, he tested positive but he wasn't bad enough, they sent him home with a tank of oxygen. THEY SENT HIM HOME. If he would have received proper care, would he still be alive? Sorry, hospitals were out of beds and he "wasn't that bad". He died.

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nation-of-bros · 2 years

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V AIDS

Attention

This blog post only reflects my own opinion! I invoke freedom of expression. If you are a sheep and yell for censorship, just unfollow my blog and enjoy your next booster!

V AIDS

Now even official mainstream media are reporting on the new phenomenon "vaccine AIDS". An article on Focus Online, a very reputable German news site, reports how German lawyers are defending clients with damage caused by the COVID-19 vaccination (→ Was ist V-Aids nach einer Impfung). The lawyers are demanding up to 6-digit compensation sums, since those who were injured by vaccination have to face a significantly lower life expectancy. As evidence, the lawyers recommended their clients an analysis of the blood count. The results of this medical examination are frightening, since they prove massive inflammation and a completely irreversibly damaged immune system. All vaccinated people have the same markers in their blood.

Before their clients had their blood analyzed, the doctors first reassured them that the symptoms had nothing to do with the vaccination. Any connection has been denied. But after these results, even the treating physicians had to accept the truth with consternation.

I think this story is just one of countless worldwide. What we are now experiencing is targeted population reduction. Of course, the Western elites will not be so stupid as to put vaccines on the market that will kill people instantly. That would be way too obvious. It is possible that the first vaccinations were only harmless saline solutions to create "trust in the vaccinations". But at the latest the booster ruins health in the long term.

Slaughter Cattle

I recently heard from a couple whose perfectly healthy son died just a few weeks after the vaccination. The parents were so mentally ill that instead of feeling abysmal anger at the state, they consoled themselves with a "beautifully decorated tombstone" talking about it happily. Their son liked Egypt. So they had a stonemason make a pyramid as a tombstone. Instead of glorifying the death of their son, they should rather go crazy and call the responsible politicians to account, if necessary by force! I just wonder what stupid passive sheep these people are. If I were vaccinated and knew that I would only have a little time to live due to a turbo tumor caused by the vaccine, I would go totally crazy and run amok, targeting politicians and doctors who are responsible for this madness. If you die anyway, what do you have to lose?! Death would only be a liberation from this sick world and the final exit should hit like a bomb!

But obviously, most sheep don't deserve it any other way, since they come to terms with their situation so well preferring to convince themselves that it's not all that bad. I could never lie to myself like that. I'd rather endure the truth, no matter how awful, to make the best of it. Even if compulsory vaccination had been introduced, I would rather have left my country or, if necessary, defended myself by force, than receive these deadly shots. When my own existence is threatened, I no longer see any reason to hold back.

#essay #me

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send-noodles-not-nudes · 2 years

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Fibromyalgia Facts With Tomiti:

There’s been a lot of fibro stuff circulating lately about how covid “gives you” fibro as a side effect, and I would just like to put them to rest.

That’s not how it works.

Fibro is very much something you’re born with. They’re working on hunting down specific genes and all that, but most people who know anything about fibro can guess that it runs in the family. Similar to autism. Both of which I have, as do MANY of my family members.

You live with fibro for your whole life, including when you don’t see it (before you’re symptomatic and it’s been “activated” or had its onset). It’s always there. Lurking. A beast in the shadows.

Until the onset. Then it’s just a bitch t posing in front of your face.

Anyways, fibro tends to be onset after the body (including the brain) experiences some level of trauma. This could be in the form of a mental break, an assault, an accident, or any number of a billion different things. It can also be in the form of a virus.

Viruses have a history of causing fibro onset, and once you’re symptomatic, they also cause fibro flares. Viruses and fibro are friends. You are their enemy. Basically, it goes something like this:

Virus: Hey, I’m new around here; do you think you can help me find the “cause pain” button?

Fibro: Man, I am SO glad you asked. I’ve been staring at it, wanting to push it, but I couldn’t muster up the courage to do it on my own.

Virus: What if we 👉👈👉👈 pushed the button together?

Fibro: That is the single most romantic thing I have ever heard in my life, marry me and we’ll push the button forever.

And then you end up in chronic pain and fatigue for the rest of your life. (Or flaring, if you already had your onset.)

But it’s still a better love story than Twilight.

Anyways, I got covid and it caused a flare and it sucks. I’m also just pissed about all the medical shite coming out about how “fibro is a SIDE EFFECT of covid!?!?!??!??” like NO. YOU ALREADY HAD IT. COVID JUST WOKE IT UP. It feels very “vaccines cause autism” to me and I don’t need ANOTHER conspiracy theory for people to use to sound like they understand my issues.

Fibro is genetic. It’s lifelong. If you have it, you’ve had it since you were a baby. It’s also not a neurological issue like so many doctors and medicines claim; it’s very complicated (you can read “What Your Doctor May NOT Tell You About Fibromyalgia” by Dr St Amand and Claudia, both of whom HAVE FIBRO and specialize in treating and researching fibro.) but the long and short of it is basically that people with fibro don’t get rid of their phosphate in their bodies, so it builds up in little deposits all over. They are big enough that you can feel them; that’s how St Amand diagnoses people because they’re found in specific places along the body and they’re present even when you’re not symptomatic because the phosphate has been building up there for your ENTIRE LIFE. But aside from that, the deposits get inflamed, which then presses on nerves, which is what causes symptoms. So TeChNiCaLLy, it’s a neurological issue, but it can’t be fixed through neurological means because the cause isn’t neurological. More than that, the phosphate in your body is what’s used to make the chemical that literally gives you energy (it’s called adenosine triPHOSPHATE, or ATP for short), and since your phosphate is shit when you have fibro, your ATP is shit, so your energy is shit.

Everything is shit. Fibro sucks. I just wish more people, ESPECIALLY doctors, understood it.

Like, the material is all out there. It’s completely accessible to a doctor. They just have to do some Google. Look around.

Yet, it always ends up being me who has to educate my doctors on my illnesses and it’s very annoying. I am so fucking tired of having to explain my illness. You’re a doctor. Read a book. Stop jumping to conclusions when it’s clear you have no idea what you’re writing about.

It just bothers me a lot because I KNOW whoever’s putting out those articles or journals clearly isn’t familiar with fibromyalgia. And if you’re not familiar with fibro, you shouldn’t be writing medical journals about it. Plain and simple.

Idk doctors and fibro just make me mad bc when it comes to the chronic illness community, with extremely few exceptions, it is (again, with few exceptions) ALWAYS the person with the illness who knows more. I just wish the doctors would listen. Or even just read a book. It’s not that hard.

Also I’m not usually this aggressive about fibro, this rage is 100000% only directed toward people who wrote those articles, so if you ever want to know more about fibro or the treatment I take for it, feel free to ask!! I love talking about it, especially since I’m familiar with the science behind it and why it works. I will not get mad at you for being curious, and I welcome your curiosity (as long as you’re respectful).

#fibromyalgia #fibro #covid #medical #getting mad at doctors #setting the record straight #still a better love story than twilight

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nancypullen · 2 years

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Covid Came Calling

So it’s been a minute since I posted. Sorry about that, we were battling the plague. We had a spectacular 4th of July weekend, Matt flew in from Minneapolis and the Edgewater gang drove over. The house was full of giggles and good food (I’m still dreaming of the German Bee Sting Cake that Jamie brought!). The grandgirl spent time in her “mermaid lagoon” (blow-up pool) and even had fun at a little carnival before watching fireworks. I didn’t go to the carnival because I was still being super careful about crowds, coronavirus, and all that. I still mask if I go into a store, we don’t dine inside restaurants, we’re vaxxed and boosted. Couldn’t be more careful. Guess who got COVID? Yep. Matt tested positive, then three days later I did. Mickey finally succumbed yesterday. Ya’ know who is still negative? The three people who went to the carnival. We’re thinking it must have attached to Matt during his travels and of course we’ve been sitting in the house yakking and eating - so there you go. We’ve been very, very fortunate with our symptoms (vaccines work!). Matt has had mostly congestion and cough, I had one rough night, maybe 12 hours where I felt rotten and feverish, and so far Mickey’s symptoms are very mild - he said he feels like he has a cold. When I hear tales about people who felt awful for days, even weeks - I know we escaped the worst of it. From what I’m reading, Omicron BA5 is what’s surging right now and is more immune evasive than other strains. Here’s an interesting article. https://newatlas.com/health-wellbeing/does-ba5-cause-severe-disease-omicron-covid-ba2-study/ Because we had a doctor in the house, he recommended a course of Paxlovid which I’m sure played a huge part in keeping our symptoms from becoming severe. It couldn’t have been easier. There are “test to treat” sites in every state, you can call your primary care physician and let them know you’ve tested positive and they can call in a prescription, or you can use an online urgent care site which is what we did. Matt handled everything and after filling out the information online (including a pic of our positive tests) we had the meds in about an hour. https://www.npr.org/sections/health-shots/2022/05/11/1097698090/3-ways-to-get-covid-pills-if-youve-just-tested-positive

As awful as I felt for that one night, I can’t imagine stringing that out over several days (or longer!). If you test positive, get the pills.

So that’s what’s been happening at our house. After being meticulously careful since March of 2020, it finally found us. On one hand, I’m ticked off. On the other, I’m grateful that it happened at a time when we’re vaccinated and treatment is easy and widely available. This particular variant, Omicron BA5, which is likely what we have, doesn’t provide the lengthy immunity that other strains do - doctors are seeing people reinfected within a month. So, I’ll continue masking in public and try to keep it out of the house. I don’t want to know what repeat bouts of it might do to the body. Can’t be good. I hope you’ll all stay careful and safe, this stuff isn’t over and probably won’t be for a long, long time. Take care of yourself because you are the sunshine in someone’s day. You’re the one someone looks up to. You’ve still got big dreams and things to do. You still have books to read and trips to take and hugs to give. You have years worth of laughter still bubbling around inside of you, waiting for a reason to come out. Don’t be careless with all of that good stuff! Mask up. Stay safe, stay well, stick around. XOXO, Nancy

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anyroads · 1 year

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link to article

It would be massively helpful if everyone read this and learned more about POTS. I've had it since I was 14 but wasn't diagnosed until just before Covid hit. My first bout of Covid made it worse. The second bout even more so.

This is why people are still asking you to mask. Long Covid is horrible. It gets compounded and worse each time you get reinfected, and can be made worse by even just a cold or a flu. Before my second bout of covid, I struggled but could have gone back to work if people had masked properly and been vaccinated. Now, after my second bout, I'm not even able to carry groceries home from the store down the street and I don't know when I'll be able to.

I could live a reasonably normal life if people masked. I'm stuck at home most of the time because it's not safe for me to get covid and I live in a country that limits vaccine access. If I get covid again, I could be disabled for life, significantly more so than I already am (not to mention the absolute hell that POTS symptoms can make your life).

So when I hear people talk about how wearing a face mask is so uncomfortable, I care exactly as much as they do for my literal health. When friends talk to me about how important it is to be able to live their lives and not live in fear, in a country that's had no covid safety regulations for almost a year now, I refuse to give them my disabled stamp of approval so they can ease their conscience.

You can wear a mask on the bus and to the grocery store and protect people like me and still go to a bar that night and have a great time. I don't get to go to bars anymore. I don't get to see bands. I don't get to eat inside a restaurant. I can't go to work meetings for potential jobs. I can't work in the kind of environment that used to be my normal for my career. So please stop complaining about discomfort when your choice to forgo it restricts other people's lives. And please stop asking disabled people to rubber stamp your conscience as you look in their eyes and tell them that you can't imagine a world where you think about anyone but yourself.

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limiteddefinitives · 10 months

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Starting anew

I went to the doctor, I went to the mountains...

I am struggling with the existentialism that my 26th year has brought me. For the first time I feel as though I am truly disillusioned by the mounting darkness that I cannot appreciate the invariable goodness this world offers. I am deeply disappointed in the reality I find myself in as an adult. This was not what I imagined when I day dreamed of growing older. I expected greater organized collaboration and competency among fellow adults. I don't know why.

I am not a teenager anymore yet I don't feel all that different inside. I understand many, if not most adults share this perception. I am constantly afraid of the future, growing older and what that will mean for me. I feel as though I was cheated out of certain life experiences and milestones since the damn virus wrecked this world. I am often mourning who I would be if that had never taken place or if we were at least collectively building strong virus mitigation infrastructure. Surely I would be a more capable, self assured woman with deeper friendships and always in line with my purpose. But like imagining who I would be if my father had never died, I know this is a hollow, mind spinning exercise.

I am constantly searching for a system to tell me how to function in all circumstances despite wanting free will. I am confused. I used to have a system of righteous social justice to guide me. I maintain pieces of that but I have witnessed enough to understand that individual rigidity, judgement and punishment are futile. I think I am lost because I'm lacking a sense of belonging to a larger community outside of my work. And I've known long before starting this career that your work can never love you back.

I am in a much better position than most people my age - I can afford my cost of living with no debt and I'm able to put away some savings. I try not to take this for granted. I always tip and share with my friends and family by unconditionally giving them money directly or buying them things that they need or want. I also occasionally donate to personal fundraisers and grassroots organizations.

I am often ruled by the distress that I will be reinfected with covid and consequently permanently disabled. This is now more in the realm of possibility than not with the way my society has abandoned collective precautions and as public health becomes increasingly individualized. I know this virus did fuck something up inside my body because my lingering symptoms include Raynaud's in my feet and a sore neck that cannot seem to hold my head up for extended periods of time. I wear my well fitted mask when possible, I always feel more comfortable and assured when I wear it. I feel safer when I witness another person/people in vicinity also wearing a mask. I am learning how to tune out the projected reactions and misunderstandings from the people who see me covering my nose and mouth. Most people are misinformed, in denial or cannot bear to break social norms alone. It amazes me how much stress is alleviated when I am in public with a friend who is masking too. The two of us grounded in reality and not denial! I am confused as to when I will be able to get an updated covid vaccine. Since 2021 I have received 5 MRNA Pfizer vaccines. The two primary series doses, two boosters and one bivalent vaccine. The last time I was vaccinated was January 2023 and I am getting anxious that the protection has completely waned. This fall I will try to get a Novavax dose because researched and anecdotal evidence demonstrate that this is the only vaccine that can prevent virus transmission, after 3 doses. Additionally, people with long covid report some symptom resolve or relief after receiving Novavax.

I worry about the levels of illness in our world population by 2030; after ten years of international covid spread and multiple asymptomatic infections undetected. I worry about the social disease of misinformation and the crumbling relational networks of basic trust and safety. I fear we will become more cruel and apathetic towards each other individually and institutionally.

There is hope. Strikes and workers rights are back on the table. Workers are banding together and demanding more pay, benefits and rethinking workplace expectations. Working from home is a huge gain for various workers. We are also fighting to solidify expansive gender identities as a natural part of human diversity. I have faith that we will win this, we have already won a degree of gay acceptance. It will take a few years of fighting and resistance but we will succeed. Neurodiversity is also being more widely recognized, named and accommodated for especially in populations that have/are historically been pathologized based on race and gender, myself included. White people are reckoning with our legacies of oppression, and the privileges that it unfairly bestows us. Indigenous peoples are healing together, decolonizing and demanding for justice and land reparations. All of the above must continue. I would like us to also pay attention to and work to address our human right to personal data privacy on the internet, and increasingly recognize and respect the rights of children as autonomous human beings.

Within the next couple of years, I will continue to work on developing, launching and maintaining the period pantry and earning my sexual health educator certificate. I also want to find a community to be a part of, I want to deepen my friendships, I want to stay connected with my sisters and my other aging family members.

I am stereotypical Barbie, and like her I must not lay down and give up. Doing it alone will always be too overwhelming, I need relationships with others if I want to accomplish anything.

Kari from the future (present)

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