#very sick of being so isolated just for being immunocompromised

[sapphic-sprite]

wear a mask please! some of us will die if we catch covid or will be sent to the hospital for a cold! by wearing a mask you are making it easier for us to just exist in public places!

[king-sappho]

The pandemic is not over. I’m immunocompromised and so is my girlfriend. We are in our 20s. We wear masks every time we go out, which is usually to a doctor. I’ve noticed that so many people in the US want to act like the pandemic never happened and the visual of a person wearing a mask makes them recoil. There are people who go so far to discriminate against us because we try to keep safe and that makes them uncomfortable (in a blue state even).

Yesterday at the dentist an old man coughed at us. When I was retrieving my stolen car at a compound the person who had my car told me to not wear my mask. The first day I moved here someone drove up to me in my apartment parking and coughed on me as well.

Before my girlfriend and I moved we were living at her parents in a red state. It was a bad situation and her parents lied to us when they had Covid. We both got it right before we had to leave. We’re still feeling the long term affects in our chronic illnesses.

What we face as disabled people is an onslaught of aggression for our existence because able bodied people are scared to be like us. They tell us we are crazy so they can go about their lives like we don’t exist or the dangers that threaten our well-being don’t exist.

What I’m saying is that I won’t compromise my safety for other’s comfort. I don’t wear masks to shame other people or to make a political statement, I just don’t want to get sick. That’s my business and my right. The world would be safer for disabled people if everyone wore KN95 masks too, and if you decide to wear it I’m grateful. But at the very least I just want people to stop stifling us and the truth. We are still in a pandemic and thousands of people are still dying from Covid. I’m still wearing a mask even if it isolates me socially from others. I have to.

[rockatanskette]

Semi-related to my post on how human conservation practices, but I have a cold today, and it's got me thinking about biological altruism—the biological imperative to put other creatures ahead of yourself, to benefit the group.

When talking about possible interactions with other species, we talk a lot about humans being crazy and thrill-seeking and impossible to kill. Never use a warning shot as an incentive to keep humans out of a fight; it'll just make them angry. And that's true. But a valid criticism I've seen in the "Earth is a death world" community is that according to our understanding of evolution, every planet must be some form of death world. Competition fosters evolution—the wolf with sharper claws survives when its litter mates die. You can't reach space travel without some casualties along the way.

But the dog survives because it makes friends with the strange ape carrying a sharp stick. And the strange ape survives because it befriends the wolf. Underneath the death world is an inextricable and undeniable layer of the bond world; the love world; the world, together.

I imagine some worlds are not death worlds. They're peaceful and tranquil. I suspect there are worlds far more deadly than Earth, where the skies rain diamonds, harder than any substance we know with the species to match. And I imagine that they are united in their confusion at the duality of humankind.

Today is a great example: I have a cold, and I want someone to take care of me, but the people who would are immunocompromised, also sick, or live 8 hours away, respectfully. I also want no one within the walls of my apartment or I will eat them. I feel gross, I feel tired, and I don't want a single human being anywhere near me, even if they did bring soup.

In my constant scrolling through my phone today, I decided to look up why the hell I feel so bad—why everyone feels so bad when they're ill. And the answer surprised me. I always thought it was because your immune system is active, so it's using a lot of your energy. That is part of it. Another part is that your brain and body are communicating across the blood-brain barrier to fight the infection, which is rare and energetically expensive.

But that doesn't explain everything, and according to more current research, it could also be what's called the Eyam Hypothesis: that we feel so gross, so we instinctively isolate from other people. We're too tired to deal with others, and so we don't infect them. Misanthropy for the good of the species. Of course, it can also backfire: one of the criticisms of the Eyam Hypothesis is that humans also instinctively care for each other. If my brother has a headache, I drive to the store for Advil.

Personally, I think it's a little bit of both: biological altruism. Either way, the majority live on. The first thought I had this morning when I woke up wasn't "I feel gross" it was "there's no way I'm going to work today." And while that might not be everyone's first thought, you don't even have to be a particularly altruistic person to not want to leave your home or your bed when you're sick. It's inborn.

And so when the human named Ismail comes down with a case of the interstellar common cold, his alien friend Dyos grows very concerned. Ismail is usually intensely social, almost off-puttingly so. Some crew members joke about how his quarters are for sleeping and prayer only; if he's home alone? You should be worried. But when Dyos demands an answer to the severity of Ismail's malady, the other humans just nod knowingly.

"Nah, he's okay, the medics already cleared him. It's not a severe infection."

"But there are so many...fluids. And his body has changed color."

There is a moment of confusion there until they remember that Dyos's species can see in the infrared color spectrum.

"Nah, that's just a low-grade fever. It should break in the next couple days."

"But he doesn’t want to play chess today," Dyos insists.

"Ohhhh," says human Claudia, finally understanding. "No, that's normal. Humans don't like being around other people when they're sick, it's supposed to be one of the major evolutionary advantages. Protect your community from your illness and the genes live on."

"So we're just going to leave him alone?" Dyos is troubled by this. He can go for weeks without speaking to another life form, but he has seen Ismail grow despondent when unable to participate in social gathering.

"Oh, no," human Claudia says, laughing. "We're going to employ one of the other most longstanding human evolutionary advantages."

There are many to choose from and Dyos settles on, "middle age?"

"Sort of," human Claudia opens up a small shipping container and holds up a brown paper bag tied with a colorful ribbon. It glows brightly in Dyos's vision, almost as brightly as human Claudia's smile. "His nanni's hot soup, express delivery."

[cant-believe-im-backhere]

Started 10-2-23

Stats:

Sw/hw: 98kg/216lbs

Cw: 93.7kg/206lbs

Checkpoints: 95/209 ✨

90/198

80/176

75/165

70/154

65/143

60/132

55/ 121

Gw: 50kg/110lbs

Unrealistic gw but we’ll see: 48kg/105

Wassup lmao!!! Can call me Wren if u want! Decided to do a bio/intro and got carried away (chronic oversharer) but it is what it is, hope u enjoy if u take the time to read!!

Dms always open 💕

Vents/progress/memes/food talk

CPTSD, kinda borderline ☠️ just ND in general, general trigger warning for ED stuff, SH, Drugs, and whatever tf comes along with that (it’s a wild ride)

✨Chronically ill & immunocompromised so that’s a thing✨

Am very pro recovery!!!! and was actively in it recently till I gained weight and everything else happening just kinda put the ED first and foremost, don’t really have anyone irl I can talk to about this so I thought I’d remake my old account!!! (Old one got banned in like 2020 or smth), and feel like it’s a safer way to journal/vent than a physical book.

Not pro ED or anything like that, but I understand it’s a sickness/mega fucks up your brain and is extremely hard to control, and sometimes it’s better to have a community who understands it rather than isolating urself in ur room and being even more destructive ya know- I don’t know if that makes sense but it’s my stance ya know-

Don’t fuck w fatspo and general DNI if ur like genuinely fatphobic tho because that’s not the vibe, I’m queer and everyone is hot ya know, and regardless of wether ur attracted to someone or not they still deserve basic respect and decency!!! Just generally be kind to ppl unless they’ve like been a massive dickhead ya know-

I need to get back into drawing/writing, but I’ve been knitting a lot, really like stardew valley, animals in general, fashion/costume design! Fruit, greys anatomy, music, TikTok, and reading when I can!!!! Love LOTR, Buffy, BNHA, some marvel, wanna watch more horror in general!

✨Goals: kinda slim thick? Flat stomach big thighs✨

[vizthedatum]

An example of how my ex/spouse used covid as a justification for imprisoning me (in the name of isolation) and then blamed me for making them feel suicidal (and also prohibited me from swimming)

This happened when I went to a really important party/event (that marked a huge life event!) in September 2022 for a very close friend (immunocompromised) which consisted of 10-15-ish people (the majority of which were immunocompromised and/or had chronic health conditions) that my ex was also invited to... that they knew I was going to... where they knew it was going to be a potluck... where I only drank water but I did unmask D: (note that Jon and I were both vaccinated at this point and additionally, we had already contracted and recovered from covid in August 2022 (besides the fact that we had hella antibodies, it's not unreasonable to go to a small apartment event for a close friend after being vaccinated)) My friends and I even had a messenger group chat for this event: tracking symptoms and, in general, being excited that we could be there for our fucking amazing friend.

... and then at the end of the party, Jon got super super upset at me - I came home and Jon made me isolate on the second floor of our home for several days when I didn't want to. It was imprisonment. They brought me food/water to my door. I couldn't come down. They wouldn't listen to reason. I was trapped. I felt... like I was the worst person ever - my PMDD (and depression and... me) was blamed (especially when I plunged into a deep depression). I self-preserved as much as I could (writing, texting friends, crying, listening to music, etc.)... but I... was so sad. So heartbroken and sad.

Later, they told one of their best friends "what I did" and she thought I should be mentally institutionalized (more on this later - this is one of my greatest fears, and they knew and they used it against me).

Meanwhile, all my friends, including the ones with serious health and autoimmune conditions, are hanging out and going outside.

I'm an epidemiologist: I know, from the data, that the vaccines work. I know how to assess risks. I know that nothing is foolproof and that you can't guarantee 100% safety. I knew that socialization and seeing people was ESSENTIAL to my self-care... and managing my stress to prevent my own flare-ups. I tried so hard. I even made documents to track our covid-risk... and put all my activities (and the people I was going to see and estimates of how many people were going to be there...) on there. I researched microcovid calculators and the like. I told Jon everything I was going to do. And it wasn't enough. It never was. They never really wanted to collaborate with me - they just wanted me to do what they thought was best.

Even when I tried to gain perspective from them and reason with them... it was a disaster.

😭😭😭

And then they turn the tables on me and imply that I'm abusing them. Gaslighting at its finest:

Not to mention... they had gotten me to give up swimming (my favorite sport and form of exercise - something that I had been working so hard on my health to be able to really get back into doing!) and then we played mental and word gymnastics about how they weren't "making me" give up swimming.... even though they did. They gave me an ultimatum in July, I think. Anyway conversation continued:

They had told me that they would not blame me if we ended up getting sick with covid - but they did.

Is it overkill to share all of this so publicly? I don't know. All I know is that... I WILL NOT BE PUBLICLY OSTRACIZED AS "JON'S ABUSER" ANY MORE. Because fuck you - you tried to ruin my reputation and my sense of belonging (and mental/physical health).

Then I was told that I wasn't "giving up" swimming and that I was distorting reality:

... and then instead of saying "giving up" I had to just shut up and agree with Jon, using whatever language made them happy. No surprise, I flared super hard - I was in so much pain.

you'd think it ended there, but it didn't. They would bombard me with so many thoughts and questions (which is fine!) but they did not like being reasoned with. And it shut me down. I was afraid to talk to them most of the time because they'd yell at me. I was scared all the time. During the end of our relationship, my usual talkative nature dimmed down so much that I could barely communicate with them to the capacity I knew I could.

And then just... this:

Yeah - it did sting that they said I avoided talking about things that are challenging because I ALWAYS TALK ABOUT CHALLENGING THINGS. Always. It's like *my thing*

Also, I'm the one who has really worked their fucking ass off in therapy whereas my ex/spouse hasn't had medical/therapeutic/spiritual/whatever help in YEARS. YEARS.

I begged them so hard.

--

There were a lot of hypocrisies. I just hate it all. Writing about it makes it easier. Knowing that my friends believe me makes it easier.

[teacupsandtolstoy]

stream of consciousness/ thoughts from the in-between; the disabled hermit girl in denial & falling far behind the others out there living in the real world; trying to keep pace with a life no longer meant for her. approx 2021-2022.

Deadline/Completion Date: I’m not a complete fkn idiot. I’m not going to put a time limitation on something as important as this. Doing exactly shit like that - trying to fit my disabilities/chronic illnesses (Read: limited existence) & ADHD-hardwired way of thinking/navigating this world into a life that never quite fit right, that I could never really make work, and of course it was at a pace that I could never keep up with, leaving me behind and feeling defeated and very alone each and every time I tried my little heart out to make it work. My isolation at Balwyn Cottage and very limited social interactions outside of home or at all had this awful way of making me feel like I somehow had started existing outside of time that ticked by out there, watching people pass by my windows, faces almost distorted as if I were viewing them on a sped-up VHS tape.

The people. Busy & full with their intricate and interwoven lives. The million and one faces of humanity floating by the cottage window, every one blissfully unaware of the sickly hermit girl, hidden within the cottage, unseen for closed doors & shut garden gates - and how she ached with missing the daily ordinary of their lives. How they made moving through the world look as if they were dancing across days – their lives an artform – one that her neurodiversity could just never make sense of. She never ceases to gape in awe at the ease, the grace of movement - The people outside seem to be so inherently gifted with; the way they move effortlessly through the hours – stepping & spinning in and out of social circles, passions, learning; with the must-dos, need-to-dos, want-to-dos - beautifully burdened & blessed by the obligations & expectations bestowed.

And yet, the sick hermit girl is still to see any one of the many-faced outsiders stumble on the beautiful paths each of them cut through the day. Not one has ever missed a step.

Not yesterday. Or the day before yesterday. Nor last week. Not six months ago.

The sickly hermit girl has counted years made from the numbered days spent at the cottage window in silent wonderment at the beauty of the lives dancing across her view; at the artwork in their fluent motion, weaving through the world, navigating their paths through this life with such natural ease.

She cannot remember if everyone outside always were so teeming with rhythm & joie de vie - or perhaps everyone is a lowkey professional ballroom dancer in their spare time.

The sickly hermit girl didnt know. Even when she lived in that world, she never quite could figure out how.

Oh yes. She is envious.

#disabled #disabledisolation #chronicillness #immunocompromised #healthmandatedisolation #adhd #neurodiverseworld #disabledlife #sickly #hermit #hermitlife #streamofconsciousness #musings #forgotten #leftbehind #fullysick #disabledat31 #disabledyouth #sick #PEG #PEGfeeds #enteralfeeds #chronicmalnutrition #chronicmicronutrientdeficient #neuropathy #nervedamage #cognitivedamage #connectivetissuedegredation #geneticcondition #nailpatellasyndrome #botchedsurgery #endocrineconditions #PCOS #pituitaryadenoma #chroniccholecystitis #hyperactivegutnervoussystem #adhesions #abdominalcavityscartissue #gutdysfunction #stomachdysfunction #enteralfeeds #nasalgastrictube #stoma #medicaltrauma #medicalPTSD #medicalgaslighting #socialisolation #disabilityisolated #chronicmalnourishment #broketummy #alwayssick #leftbehind #PTSD #cPTSD #EMDRtherapy #diagnosed #TPD #totallyandpermanentlydisabled #fulltimecarer #unemployed #disabilitybenefits #healthindecline

(youtube channel collecting all the silly, weird, informative & sometimes very sad videos/clips ive been unconsciously making since becoming disabled in 2018)

(the only song ive ever heard about sickness & death that has ever knocked the wind outta me. its so fkn real that i completely fall to bits whenever i hear it.)

(pawninsuburbia secondhand & handmade. independent, disabled owned & run creative studio space. what i choose to do with the little functional hours that i am gifted. make beautiful things in spite of this place. skillshare tutorials free of charge for others facing isolation and poor mental health due to chronic health & disability/neurodivergence in the local community. how i use the two or so occasions per year i can get it together & put on a market stall/s to make new friends/enjoy my rare time out in the world & this small part i have in it. custom & collaborative orders, fully subsidised craft tutorials, online store channels, crafting how-to guide & item care instruction library downloads. upcoming events. depop store link. all enquiries & studio contact details. handmade gallery and previous works portfolio.)

[liminalweirdo]

"It makes a better world for everyone if we take care of everyone."

video transcript behind the cut

John Yang:The pace of U.S. COVID-19 fatalities has slowed significantly. The nationwide death toll stands at more than 1 million people. With precautions like mandatory masking, social distancing, and isolation no longer in place, it can seem as if worries about the virus are gone as well. But for many people with disabilities, the threat is still very real. We asked people in the disability community to tell us about their concerns about this new normal.

Naomi Ben-Porath:Naomi Ben-Porath. I'm 26 years old. I live in Lowell, Massachusetts. I have POTS, postural orthostatic tachycardia syndrome. I would say that the changes in the COVID policies have definitely made me a lot more nervous to be out and about.

Ngozi Alston:My name is Ngozi Alston. I have scleroderma, which is an autoimmune condition. There's just so much erasure that exists, right? Like, we are not part of public spaces. We're not part of mass movement. We can't be. They're not safe.

Jermaine Greaves:My name is Jermaine Greaves. My different disabilities are cerebral palsy. That is a neurological condition that affects the brain and the muscle. My second disability is hidradenitis suppurativa. That is a chronic skin condition. I'm just afraid of getting sick and not being able to, like, get through it, you know, that's a real concern for me.

John Ross:My name is John Ross. I am a 71-year old widower with chronic lymphocytic leukemia. I don't go to restaurants. I don't go into inside places.

Julie Lam:My name is Julie Lam. I am immunocompromised. I have chronic kidney disease.

Terri Hudson:My name is Terri Hudson. I live in Chicago, Illinois. I was born with spina bifida.

Natalie Lampros:My name is Natalie Lampros. I am 28 years old. My current disabilities are, I have a traumatic brain injury, asthma, and then endometriosis. There's still doctors that I have not seen in over a year because it would require me to take off my mask for the test.

Ngozi Alston:The burden is constantly on me as the disabled person, having to ask and advocate for myself, even trying to hang out with friends or people want to come see me, but aren't willing to, like, take the level of precautions that I need them to.

Natalie Lampros:A lot of grief, depression, and feeling very disconnected from our culture essentially.

Naomi Ben-Porath:For many of us, we don't have the luxury to think that COVID, as a public health situation, is past us. And so it's been very isolating seeing the national discourse turn in that way.

Julie Lam:My social life has shrunk to zero. I cannot attend parties. I cannot hang out with friends like what I used to. It used to be like, we are in this together. Now, no, you do you. You're on your own. You look after yourself.

John Ross:I'm thrilled that people are able to get back to their lives and do the things that we all love to do. But at the same time, we need to also recognize that life is precious. And we may not be out of the woods completely, even though it seems that way.

Jermaine Greaves:The person next to you, you don't know what chronic condition you don't have. You don't know what sickness they're carrying around. You giving them COVID could be literally life or death. So I would implore people to think about community when they wear a mask instead of thinking about themselves.

Terri Hudson:We should be doing everything we can societally, all of us, to take care of all of us, because there's really nothing that disabled people ask for as far as accommodation and help that doesn't also benefit nondisabled people ultimately. It makes a better world for everyone if we take care of everyone.

[callmebliss]

Dealing with having Covid has been A Process, and I know at the outset that I am luckier than a lot of people have been. My symptoms peaked with Bad Flu and, while it's taken longer for me to recover than the others in my household who had it, I'm recovering and at no point was hospitalization even on the table for us.

One thing that's interesting to me about it was a conversation I had with Youngest Spawn when the illness first hit the household, in comparison to the conversation we had this morning. I knocked on his door and stayed at the doorway with my mask on to ask how he was feeling and to tell him Middlest tested positive and that SALM and I were both experiencing symptoms, and to lay down the house rules of Stay In Your Room As Much As Possible, Only Leave It With A Mask On, Open The Window In The Shared Bathroom For Ventilation Every Time You Use It. He listened, but remarked, "Wow, everyone is going to get this eventually." Nonetheless, the rules were the rules, and we all abided. (Abode?)

Five days after Middlest tested positive and the three of us had symptoms, SALM and I tested positive. Eldest and Youngest tested negative. Five days later they were still negative, and able to go fully masked back to school (which was and still is getting hit hard by this wave). This morning we were talking over poptarts (him) and espresso (me) from opposite sides of the kitchen about how strange school is right now with lots of people out, including one day last week where a couple of kids in the Program (RISE for autism-flavored students) he's part of showed up and there were just...no grownups at the classroom, so they all did their own thing there until it was time for the next period.

We discussed how many people are getting it, and the importance of continued masking, and I pointed out that while it is just one anecdotal piece of data rather than something comprehensive, I was very heartened by the fact that despite this being the most contagious variant and all five of us sharing a household and certain common spaces, by following the rules diligently and maintaining isolation and masking in the common spaces we DID manage to get through the contagious/shedding period without three of us giving it to the other two of us. "Yeah! It's not inevitable! And I'm going to be really proud of my flex if I get to come through the pandemic without ever getting it." I admitted I was sad to have lost that flex myself, but glad about keeping him and his brother from catching sick. We talked about the folks we're continuing to protect by not just giving up - older folks, fellow students, little kids, immunocompromised folks of all ages.

It's not inevitable, and it shouldn't be, and it won't be. I won't give up.

[callmearcturus]

For the “essential” service workers

Not everyone gets to quarantine. Not everyone has a WFH job.

Some people are running the “essential” stores that people come to every day to browse idly because “everywhere else is closed!” Some people are throwing up stock of bleach and TP and canned food only to turn around and see the stock has vanished behind them.

Some people are stuck working for companies with no paid sick leave, or they are offered paid sick leave… if you get diagnosed with covid-19. And none of us can even get tested in most states even if we show symptoms due to the draconian guidelines on who gets a test.

Some of us are immunocompromised or live with elderly family and are fucking terrified of carrying covid home with us.

Some of us are “lucky” and are getting increased wages during this period. But it’s up in the air if that makes this shit worth it, and most of us don’t get that.

Regardless, I want to establish one thing: No one who works retail asked to be “essential” services. And none of us were trained for this and none of us are being paid enough for this.

Personally, I have enjoyed my job up until covid happened because I’m an incredibly anxious person, and my store was a quiet one, and I was good at my job. It was a calm environment to work in, and I was happy to find it.

Now, I’m having repeated crying jags in the stock room and looking up how to qualify for unemployment and not seeing a way out. I handle the money for the store deposit almost every night, and I intimately know my store is making at minimum 4x usual profit and some days 6x or 7x more.

My point in this post is that I know I’m not alone. I have two friends in similar straits who are also on the verge of breaking down. We can’t sustain this.

The rallying cry of “paid sick leave” doesn’t mean shit if it comes with the caveat that you have to test positive for a virus you can’t get tested for. And while I am trying very hard to be sympathetic to the people who are isolating, who are lonely, who are struggling, I feel like “essential” workers are being thrown in the woodchipper.

And it becomes very hard to hold onto that sympathy when people just! come into our stores! to walk around! Maybe if fewer people did that, maybe if my store stopped making astronomical amounts of money, we’d close for a few days. But nope.

Please start yelling loudly for hazard pay for essential workers. Please start yelling for testing for everyone so we can fucking go home. Please stop talking about how “brave” we are and help us.

That’s all. This is a post for my fellow low wage workers who woke up one day and found out they’re essential staff, retail or EMTs or gas station workers or whoever you are. This is bullshit and we’re tired and we need help. Before we all burn out.

[flyonthewallmedstudent]

COVID misinformation.

I know the internet is literally plagued with misinformation and fringe conspiracy theorists. I mean, we live with the consequences daily, with January 6th capitol riot in the US, constant protests on whether COVID is real or being spread via 5G etc.

It's weird watching people with no medical or epidemiological training throw out statistics. And it's like.

There were a lot of misconceptions about the flu vaccination which I got used to dispelling and discussing with patients pre-pandemic over the years. To note, I don't press hard if they've made up their minds and this group comprises a very small, sometimes vocal, radical minority.

But if patients are on the fence, it's incredibly important to have that discussion particularly if they're in a higher risk group for severe disease and hospitalisation.

To clarify, the flu vaccination as with the COVID vaccination, may not prevent you from being "infected" or picking up the disease. But it will prevent severe complications and hospitalization. In short, it prevents you dying from the flu. And people do die from the flu, just in much smaller numbers than COVID and within the much older age groups. It was rare for flu patients to require O2 or ICU intubation for ventilation. With COVID, we are seeing this requirement. The average COVID ICU admission is 10 days, which means if you're unlucky it could be much longer. Also France has just published a study of 22 million demonstrating this. Pfizer cuts risk of developing severe COVID by 90%. Moreover, if you wear a mask regularly, your ability to infect someone else is substantially lower too. This youtube video explains pretty bloody well.

I have this conversation over and over again each year about the flu vaccination, and the resistance is much less with the flu vaccine even now.

But now that a pandemic is at the fore, I'm having this conversation more often and not just with patients, but with family and friends and now online.

Some of them are highly educated, but again, we do a terrible job mitigating misinformation or providing appropriate public health education as a whole. I wholeheartedly agree with the American Surgeon General that misinformation on social media is a massive issue that requires action.

The vast majority of patients being admitted for COVID are the unvaccinated. In the minority of groups that are fully vaccinated and require hospitalization for COVID, it's often because they're immunocompromised or have underlying health conditions (it means their bodies are less resilient to fighting illness or their immune systems are less robust).

Our best protection as a society is herd immunity for those who cannot fully benefit from being fully vaccinated themselves. This includes neonates and infants who cannot receive vaccines the day they're born, we often forget this when we do not have children ourselves.

We call it the pandemic of the unvaccinated because overwhelming it is the unvaccinated that are hospitalized, not the vaccinated.

But truly it is also a pandemic for the vaccinated in the sense that there are so many unvaccinated COVID patients in hospital now, that if you have non-COVID condition, you will suffer delays or potentially receive substandard care.

Major tertiary hospitals have been converted to priorititze COVID patients (as they may imminently require negative pressure rooms or ICU), so the non-COVID are being transferred say to hospitals who do not normally treat complex patients etc. They will suffer worse outcomes. Not a hospitals are created equal, that does not make them terrible places, they're just not for more critically ill patients, but we are shuttling patients there to make room for the very sick with COVID that need isolation to prevent spread.

This is a lot more than personal or individual choice. It's a moral and ethical responsibility we all share to protect the vulnerable and our community as a whole.

Healthcare is a finite resource, but as the vast majority of the population have no exposure to what a hospital system is like, it's often more of an intangible concept. How do you compel someone to care about something, they have no connection to? I am heartened by the fact that social media giant Facebook is finally facing the music and congress is considering legislation to regulate it and misinformation that is prolonging this pandemic and its consequences. This is long, long past overdue. I thought it was hilarious when before congress Zuckerberg said "Lying is bad," we shouldn't do it, but permitting and encouraging it, is much the same. It has the same if not worse consequences. You can't merely absolve yourself of responsibility.

You know, I still can't believe how much of medicine has changed in a couple of short years. I never thought I'd see this in my life time as a healthcare provider, and there was nothing in my training or during medical school that would have prepared for this.

Usually, I'm also used to conspiracy theorists and other similar minority groups on the fringes. Where I can "ignore them" and move on with life. In the rare moments I'm faced with them, they're fleeting, like the very occasional patient dying of metastatic cancer because they're in denial that cancer exists, or that modern medicine will help them. I've seen them die in hospital still taking complementary medicine to 'cure' their incurable cancer to the very end, but they're no longer able to look after themselves at home they have to go somewhere. So they come to us. Possibly you could argue individual choice here, cancer is not contagious. The flipside to that argument is that early intervention also saves vital resources for everyone else who needed them and did not sign up for someone else's extreme views.

A pandemic is a different thing. Every individual choice impacts and upends every corner of society in a very extreme and short time frame. Swallowing up whole everything we have.

[rosafulmen-a]

Heya ! I’ve had a couple of people check in on me over the past couple of days/weeks and I thought I’d just chuck a line and say that I am still around, just currently dealing with the world at large. Under a read more; just for mentions of the pandemic / medical things and stuff.

Anyway, hi, my activity is in the garbage because the pandemic has suddenly become pretty real where I live. I had the luxury of being in a part of the world relatively sheltered from COVID-19 so, whilst we knew it was bad here, people weren’t isolating/getting sick/dying. With omicron, and governments getting lax... it’s here. So, fortunately, we’re not dealing with supposed ‘worse’ strains of the virus, but it’s around and growing like mad.

I’m immunocompromised and my job, without going into detail, is very front-facing and deals with a lot of people on a day-to-day basis. Trying to maintain normalcy under those conditions honestly sucks ass and, by the time I get home, I rarely have the drive to do little more than crawl into bed and sleep. I consider myself lucky in that my disease CAN and HAS gone into remission, so I’m trying to wean myself off my meds in a bid to keep my immune system as strong as it can be without attacking my body, but getting sick could also cause flare ups - you can see the catch-22 here.

I’m pretty open about my condition so, if you’re curious and don’t want to ask, I have vasculitis - specifically, cutaneous vasculitis. The images of my disease can be pretty gnarly, so take care when googling it if you’re curious. All things considered, it’s not as bad as some peoples’ conditions... but its not fun.

So, yeah! Chances are I’ll be around if I end up being a close contact/get sick and need to isolate (lmao) or we hit and pass our ‘peak’ and I’m not holding up the fort for co-workers who also need to be off for illness/surgery/caregiving etc. Right now I’m sort of taking it one day at a time and playing xiv/hanging out with my friends in the meantime. I may come back to the dash sporadically, but please keep this post in mind if you’re looking for an indicator of my activity.

I miss you all, I give you a smooch, see you on the other side.

[aijee]

Life update 9/10

CW: COVID/illness, mental health

Hi, it’s been a while, hasn’t it?

First of all, welcome to all you lovely new followers. Full disclosure (and gentle reminder for anyone else following), I’ve sort of fallen off the writing mood for a while, so if you’re here for Seventeen, Meanie or fanfic content, it will be pretty rare, if that wasn’t evident already. But if you’re here to keep up with my life once in a while, I appreciate your time and attention. :)

Second, I still strongly believe that we’re in a pandemic. I’m still appalled at the lack of empathy, respect and protection towards immunocompromised, disabled, chronically ill, socioeconomically disadvantaged, marginalized people in a country (America for me) that would rather us go back to work and make money than ensure everyone is safe and can comfortably return to their daily lives without feeling like their life is actively threatened. I’ve felt a lot of disillusionment towards my workplace, country (of which I am now a citizen, ironically) and life goals lately, which has been difficult after so many years of aspiring to learn, live and work here.

Part of that disillusionment is having gotten COVID recently. Like many Asians, I grew up in a multigenerational household, and that habit of thinking about how my actions affect my elders is ingrained. I couldn’t bear to leave my apartment, but my workplace and institution insisted that I return to work after a really short isolation period—in my mind, prioritizing the work to be done over (1) my health and comfort, (2) how my coerced presence would affect others more vulnerable down the line. It was really hard going against my morals because I had to pay bills and eat. Still wearing masks and diligently sanitizing/washing hands until now, surrounded by people who don’t makes me feel like a fucking crazy person. Am I the only one who still cares? Am I the only one who still sees the COVID numbers? It’s honestly really jarring to feel so disconnected from the reality around you.

I was not in a good mental place, having COVID. Obviously being ill and in bed most of the time is not a good experience, but I also live alone. The pandemic has been and continues to be wrought with loneliness; I try my best to supplement that with video calls with friends and texting family. But to be ill and without close support where you live is downright scary and extremely melancholy. To be young and alone in a city full of people is so very sad.

For better and for worse, I finally got a doctor’s diagnosis for my mental health struggles and am starting on medication for the first time (which happened at the same time as getting COVID—imagine how that experience was, oof). It’s both scary and relieving to hear what I imagined was what I was dealing with for a while. 

This, alongside COVID, has been making me extremely tired almost all days. I use up all my energy to survive at work, keep up a face and do my job well. I use up all my energy talking to friends, being genuinely happy to see them and chatting the night away. But outside of that, I’m left with scraps to do things for myself beyond the bare minimum of eating, sleeping and cleaning. I’m trying not to judge myself for it. As my therapist keeps saying: “It just is, and that’s okay. You’re okay.” Many are in similar positions, just doing their best to get by day-to-day. But it doesn’t make me less of a person or less worth of existing.

Funny thing is that I fell of off Seventeen and GoSe, which I used to watch religiously back in the day, some time in the pandemic when things got rough and K-Pop just wasn’t the healthy comfort place it used to be. Since getting COVID, I spent so much of my sick days watching these silly boys doing silly things. It was a joy to reconnect with the joy they gave before and give me again. I didn’t intend to write about these difficult experiences of mine, but it felt appropriately full-circle to mention on this blog that SVT has been an indispensable, wonderful comfort for me lately. I missed them so much. I’m grateful for what they do because I don’t think I could’ve gotten through the last several weeks without them.

Maybe by writing this, it’ll help me remember: I’m doing my best. And that’s okay. I’m okay.

[thebibliosphere]

Allow me to start by saying, I’m not mad at anyone for not realizing this and I’m not criticizing you for not thinking about it (because why would you? this is not your norm), but I feel like a lot of people not understanding why I can’t do things like home physical therapy visits at the moment, don’t truly understand what it means to be dangerously immunocompromised during a time of pandemic, and just how strict self-isolation measures have to be for some of us, and the level of isolation we live with year-round because of our illnesses.

I am a sick person, this is news to exactly no one unless you are very very new to my blog, in which case, hi sorry the funny post you followed me for is tied to this train wreck. I live most of my life in isolation because of my illnesses, and I’ve had over five near-death experiences in as many years, but last year I nearly lost the fight for good. I have spent the entire last year recovering, slowly regaining strength, slowly managing to stabilize and regain some small quality of life. Slowly, so very slowly, because the toll of nearly dying is not something you bounce back from quickly, physically or mentally. 

That alone would make me a high-risk patient for something like COVID-19, but on top of that, I also have a condition (MCAS) where my body overreacts to infections to such a point where my own immune response can send me into anaphylaxis, among other things. You know that whole “cytokine storm” everyone’s talking so much about but hardly seems to understand but is absolutely scared shitless of? My body does that all by itself. *jazz hands of despair*

So just to recap: as an immunocompromised individual, I am more likely to get the virus, but also because of my MCAS, I’m more likely to die from complications because my immune system is a sack of rabid weasels fighting in a trenchcoat. This does not even include the complications from a condition like EDS, where I am more prone to lung collapse and heart valve prolapses if I get something like COVID-19 or y’know, flu. (Please get your yearly flu shots and practice good hand washing protocol year-round regardless of global pandemic status, please I am begging you.)

This is why several weeks before the pandemic was officially declared, my health care team decided “yea, you should probably stop going outside unless it’s an emergency” and canceled all my nonvital care, which regrettably includes all the things I do to manage my pain i.e. weekly massage and physical therapy. The risk was just deemed too high. 

The week pandemic was declared, the message turned into “everyone you live with either needs to self isolate with you or leave, don’t interact with anyone unless it’s a medical emergency or part of your vital care”, vital being “a thing which keeps you alive”. And just to give you an idea of how strict this measure is: the testing for the condition which sends me into random anaphylaxis has been indefinitely postponed and declared an elective. *despairing jazz hands intensifies*

So no, I can’t have home care for physical therapy right now, because no one apart from my husband is allowed in or out of our house. I am not just being stubborn or dramatic. I am not shooting down your seemingly sensible suggestions because I am being contrary and difficult like someone implied in my inbox (and okay yea I am mad at that one person and they can fuck off). I am trying to protect myself as best I can because I’m acutely aware that others won’t. I’m aware of all the people complaining and breaking self-isolation rules because they’re bored. I’m aware of all the people who keep saying things like “but we need to get the economy going”. I am aware that for many people, I am an acceptable statistic. I am aware my life is more than likely forfeit if I get sick and it’s a choice between me and someone else. I’m aware, I’m so horribly aware all the time and on top of that I’m in so much pain sometimes all I want to do is lay down and cry, Sometimes it’s all I can do.

And sometimes I just want to bitch about it without people trying to offer “obvious” solutions, who don’t know the full scope and reality of what this life is like. And I would appreciate if people respected my knowledge of myself enough to listen to me when I say something isn’t an emergency and not imply I’m not taking care of myself, because friend, you have got no God damn idea the lengths I go to to stay alive every day. And I’m not the only one living in this perpetual nightmare day in day out, regardless of pandemic. I’m just the one with a platform big enough to be heard.

Please, be kinder, and think before you offer what seems like an “obvious” solution. If it’s obvious and we’re not doing it, there’s an obvious answer as to why. You don’t need to know that answer in order to know it’s valid. You just need to respect that it exists. 

I know the desire to help is there, and I applaud that desire, but ask yourself, is the person asking for help? Have they requested feedback? If yes, respond accordingly. If not, offer sympathy and kind words instead. If you’re not sure here’s a magic phrase that will serve you well for most situations like this:

“Do you want help or do you need to just vent and let it out? I’m here either way.”

[freddieofhearts]

Bye bye, dears (for now!)

I know there have been a lot of rumours and some posts about me leaving, so here I am to set the record straight and say a quick ‘au revoir’. This post is long, and I don’t expect everyone to read the whole thing—if you just want information on how to keep in touch, or about access to my removed fics, scroll to the bottom. ⬇️

*

Why are you leaving?

Firstly, of course I’m not leaving Freddie. This is just an ongoing hiatus from the social side of fandom, because while I have some incredible friends here, who have done all they can to support me and have made this experience wonderful in lots of ways—it’s also true that the social space has become more and more toxic for me.

I get a wild amount of hate. Despite never having my ask box enabled on here, people create new accounts just to message me and tell me all the problems in this fandom are my fault, that I’m faking being sick, that I should kill myself, that I’m fat, etc. I also very regularly get hateful comments on AO3.

Obviously I realise that I’m not the only one who receives these cruel attacks, but it’s become increasingly hard to handle them—especially as some people (‘real’ accounts, not faceless anons) do continue to blame me for wider problems in the fandom. It makes me feel consistently sad, anxious, and paranoid, so that I can’t focus on anything Queen-related that I enjoy.

More pressingly, it’s affected my mental health, which is—imperfect at the best of times. As I’ve occasionally alluded to in older posts on this blog, I have a history of anorexia, OCD, PTSD, and some other overlapping issues. Most people who know me in the fandom are also aware that I’m ‘clinically extremely vulnerable’ to Covid-19, significantly immunocompromised, and have been isolating at home for eleven months.

The combination of all of these things + the constant toxic messages has really been triggering me, and leading to an uptick in disordered behaviours, which my body cannot sustain. Every new instance of hate from an anon—every time there’s another indication of groups in the fandom wanting to ostracise me further—my reaction is deeply self-punitive and unhealthy. Ultimately I need to be out of this environment for, at least, a protracted period. My therapist, my partner and my close friends in the fandom support this decision.

*

So, what went wrong?

In 2019, I expected to be an absolutely tiny blog in the Queen Tumblr landscape. The fandom was already well-established, and I have never worked to ‘build a following’ on here—I think I’ve linked my own fic a maximum of three or four times!—in fact, more or less the opposite. As I mentioned above: ya girl is nutty as a fruitcake. As a result, I often avoid extremely niche things in daily life which cause severe anxiety for me, Relevant examples here: I never look at my timeline. I never intentionally look at my follower number. Yup, it’s strange, I fully admit it, but it’s best for me to go with these things—usually. In Queen fandom, however, this avoidance both of analytic stats and of most direct engagement led to some problems... My followers grew without me realising, and way more people were reading my blog than I was aware of. I was still in a—“Wow, this fandom is very frustrating, and rife with ableism, racism, etc., so how do we fix this???”—mindset, and I wanted to share my opinions, sure! but I also thought I was sharing them with 15-20 like-minded people.

Now, intent is not impact, and I recognise that I was brusque, didn’t phrase things particularly sensitively, and absolutely did hurt some people by criticising the fandom so freely. I still regret this—and I regret just as much the fact that some assholes have used my criticising the fandom on my own blog as implicit justification for attacking authors. I have said on here many times that I don’t condone that behaviour—but I also think there’s some truth in the presumption that these anonymous malcontents felt my critiques somehow ‘permitted’ them to engage in abuse. For the first few months, though, I genuinely had no idea there was a link at all—and so I was initially slow to condemn this abusive behaviour in public, because I was taking it for granted all authors agreed it was shitty. It took someone directly telling me (shoutout to @a-froger-epic) that people had identified a connection between my posts and the anons, before everything fell into place.

I would like to offer my apologies to the fandom at large for not being more quick on the uptake about this, because I feel that had I realised sooner that these people were taking ‘inspiration’ in some way from me, it might have been easier to put a stop to it. It does seem that there is still a lot of confusion about whether I support them and which of their views I agree with. Let’s be 100% clear on this: I do not support the anonymous commenters on AO3. At times there is some, limited overlap between parts of their views and parts of mine, but even that is less than you may think—I often see anonymous comments from so-called ‘Freddie fans’ that I substantially disagree with.

Perhaps even more importantly: I do not support anyone who sends anonymous hate on Tumblr.

*

What’s all this about ‘overlap’ with the anons?

Let’s do a mini-summary of the myths vs. the truth. There are views I hold which are genuinely unpopular in the fandom—but which I own up to completely, and have never tried to hide in any way. I’ve never needed to use anonymous to share my opinions because I’m completely open about them! What people who don’t know me tend to have ‘heard’ about me, though, is usually a drastic distortion of my real opinions.

What people think I think:

- Freddie should never top.

- It’s okay to send anon hate if someone writes Freddie ‘wrong’.

- It’s more important to correct ‘wrong’ portrayals than to respect other writers.

- It’s inherently wrong to be more interested in band pairings than canon pairings.

- Freddie should be overtly written as a r*pe survivor/victim (and not doing this is wrong).

- Freddie should be overtly written as having an eating disorder (and not doing this is wrong).

- Kink fics are wrong.

What I actually think:

- I believe Freddie did have a strongly defined sexual identity with marked preferences, but I don’t think Jim Hutton lied when he said that Freddie topped. I believe Freddie did top, but this isn’t the time or place to get into my thoughts on why/when/how much. I do believe that my analysis of the sources relevant to this subject is as historically accurate as one can reasonably be in matters of sex (where historical accuracy will always be particularly limited and imperfect)—but I don’t think it’s morally wrong to write Freddie as topping more than he probably did.

- I don’t believe there’s only one ‘right’ version of Freddie (all others being ‘wrong’). I do believe it is possible to be more right or less right—but I’m also conscious of the fact that this scale of value is not one by which everyone measures fanfiction. As a result, then, I don’t think that any perceptions surrounding ‘right’ or ‘wrong’ justify sending anonymous, non-constructive criticism, or outright hate.

- I do believe constructive criticism is a good thing. I welcome and appreciate it myself; I have received it on my fics in Queen fandom, and it has made them better. I have been in writing workshops which included very forceful criticisms, and the value of such feedback has been intimately and immediately part of my life as a writer for years. However: in this case, I have accepted that my opinion differs from the general community preference, and so I no longer offer any constructive criticism (outside private beta-reading). I haven’t changed my view, but I’ve changed my practice to align with community norms.

- I do not think any single, individual writer has a personal responsibility to write about Freddie Mercury in any given way. That ranges from including the more distressing topics to which I’ve devoted attention (such as trauma)—to concentrating on ‘canon’ pairings like Jimercury—to, even, focusing on Freddie at all.

“Now, that doesn’t sound like you, @freddieofhearts,�� you might be thinking. And I know it doesn’t; I think something I’ve done a poor job of articulating is the difference between how I view each individual fan—namely, as free to shape their creative experience at will, even in ways that I might find distressing or offensive; even in ways that you might find distressing or offensive—and the way I view the Collective. I think people have interpreted some of my critiques of ‘Queen Fandom’ as meaning something like: “You-in-particular, a specific Queen fan, are doing it wrong and should change everything about how you do it; also you don’t really care about Freddie.”

And—that’s not it. What any given fan, as an individual, does, isn’t a problem. And that can be true alongside—concurrently with—a multivalent critique of how the fandom is lacking in representation of Freddie’s life, with all that that (wonderful, deservedly celebrated, but also profoundly traumatic) life entailed. I still hold that view; I still have myriad problems with ‘the fandom’ (structurally, collectively, historically and presently—from the 1990s to the 2020s). Some of what I want to work on (away from the social life of fandom) is expressing those critiques with greater nuance, in ways that can’t be misinterpreted as shading any particular fanfiction author or subgenre of story.

In brief: I haven’t changed my mind, but I think Tumblr is an untenable environment in which to discuss the things I want to analyse, especially as there is an ever-present danger of hurting someone.

*

Can we keep in touch? Where is the fic?

I will drop by this account periodically to check out posts that friends have sent me, so you can always sent me a private message to ask for my contact details on the other app that I’m using now for fandom friends. Multiple Freddie conversations and projects are going on over there, off-Tumblr, with a much ‘gentler’ environment and no bad actors—I personally love it!

All my fic has been downloaded and saved. I don’t want to deal with constant harassment on AO3, but I’m happy to share a copy with anyone who missed it and wants to read/re-read something. I also saved everyone’s lovely comments and thoughtful con-crit, so none of that has been lost or erased.

Thank you to everyone who welcomed me to the fandom, made me think, taught me, shared with me, sent me into fits of the giggles, collaborated with me creatively, and otherwise made this one hell of a ride! Love you all. ❤️

[bisexual-rebekah]

so somehow despite masking and social distancing and being vaccinated i STILL got covid. yayyyyy. i just got my test results back.

to be fair, i'm only like 10% complaining in that first sentence. all things considered, i got off really easy. i felt like i had the flu really bad on the first three days (like misery level 9.5/10 for sure) and now i'd say i'm at a misery level of like 4/10 which is honestly pretty comfortable considering the alternative.

and i'm glad i went through the trouble of masking and social distancing whenever possible (and obvs I will continue to do so after isolation is over) and i'm glad i got vaxxed, because i'm guessing i got one of the way more severe/infectious variants like delta, gamma or lambda (since the vaccine would have protected me most from the original strain) so the fact that i'm vaxxed probably kept me out of the hospital and is the reason why i had such a mild case (comparably speaking); i have rheumatoid arthritis and am kinda immunocompromised to begin with, so since my main symptoms were basically just feeling *sick* e.g. horrible muscle aches, headache, nausea, fever (max temp was 101.6), nasal congestion, and a very mild cough (like literally i cough maybe once or twice every 12 hours), all things considered, i got off pretty easy.

so now i don't have to go back to work til next wednesday and i'm trying to stay in my room as much as i am able in hopes of not giving it to my parents, but considering i was infectious a few days before i was even symptomatic, and i have had symptoms for five days now, they should be showing symptoms today or in the next few days if they are symptomatic at all.

either way, my dad works from home and neither he nor my mom go out more than like once a week to run to the store so i think we should be good on the quarantine/isolation front. the main concern i have is my coworkers/patients, because my boss refused to let me call off on thursday or friday because we're so short-staffed we literally would have had to go 12 whole hours without a nurse if i hadn't come in. so, i just kept my distance, kept my mask on at all times, and washed my hands every five seconds. i even wore gloves when i got meds ready so nothing could touch my hands even on accident. i just hope i didn't get anyone else seriously ill or i will be heartbroken.

sooooo long story short i'll probably be around more the next week or so since i'll be bored af and won't have work to keep me busy.

[obaewankenope]

Did you know, the government's planned response to Coronavirus goes entirely against WHO advice for countries? The best advice is Self-isolation and social distancing aka the advice from the World Health Organisation. The UK Government, instead, has dithered and dallied and refused to ban mass gatherings, close schools and universities (or at least make learning an online thing for the time being), and so on. That's because Sir Patrick Wallace, who is the chief scientific advisor to the government argues herd immunity is what is needed.

Now, he's not wrong. With diseases, herd immunity really helps. That's why we get told to get the vaccines for so many diseases like measles, mumps, rubella, the common cold, tetanus, etc. Because those vaccines give us immunity to the live version of the disease. This, in the long-run, protects those who can't have vaccines or who vaccines don't work on because they're immunocompromised.

Immunocomprised is, essentially, your immune system being crap at fighting off illness.

People with Asthma are immunocompromised.

People with Diabetes are immunocompromised.

People with Chronic Fatigue are immunocompromised.

People with Cancer are immunocompromised.

People who are Elderly are immunocompromised.

Herd immunity for most diseases is possible because of mass vaccinations (this is why you see so many "vaccinate yo kids!" memes on the internet, it's important and saves lives). Coronavirus is different to the diseases we have herd immunity for.

Corona has no vaccine as of yet.

The only way herd immunity will happen without a vaccine is through infection and recovery of the majority whilst a minority die due to the disease.

Approximately 42 million Brits would need to be infected for herd immunity to be effective against corona. With an approximate 2% fatality rate, 1.2 million people in the United Kingdom would die during this phase of obtaining herd immunity. These would be primarily disabled, elderly, and immunocompromised. But there would be those with undiagnosed health conditions who will die. You may think yourself healthy, family, or friends, but you could be blindsided by corona revealing a condition you didn't know you had and it could be the death of you.

This is why vaccination-based herd immunity is so important.

Corona is, in comparison to other diseases, not as deadly as you'd think, but it spreads fast and that is the risk of it. That's why the WHO advice for infected countries, and communities at risk of infection, is to self-isolate for two weeks (not just 7 days like the government has stated) and to engage in social distancing.

Avoid publicly crowded areas.

Cough into your elbow not the air.

Wash your hands for 20 seconds (the chorus of Mr Brightside works for timing).

Use a tissue if you sneeze.

Don't shake hands, wave in greeting.

If you feel sick, isolate yourself.

These are just a few, simple things you can do to both reduce the risk of infection and of spreading corona.

I know this post sounds very doom-and-gloom, but corona isn't the end of the world. It's a huge pandemic that the world wasn't ready for. That, with austerity and reductions to health services, is a huge strain on a strained system. But it's still something survivable.

You can recover from corona. It generally is just like a bad case of the flu. But even the flu can kill.

We need to be responsible and commit to rational, responsible behaviour. Don't ignore the threat just because you don't think you're at risk. We never think something bad will happen to us until it does.