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Good For You
So well-said @oliviarodrigo 👊🏼: Maybe I’m too emotional…or maybe society has never cared about the long-term consequences of #postviral illnesses because it was easier to pretend it was in our heads versus a serious, physical condition resulting in multi-system organ damage, unmanageable medical costs, lost relationships, lost jobs, lost income, suicide…than it was to put our collective intellect together to recognize, research, innovate testing for, and actually *help* those who are wholly neglected by an ableist society that values unhealthy productivity and therefore profits over people and humanity. This apathy the world has towards chronic illnesses, and the lack of registering just how widespread and serious #longcovid is for all - with #covid being the largest mass disabling event in modern history - IS indicative of a collective of wounded souls. And those wounded souls, pushing a removal of mask mandates just as we saw a year ago with premature re-openings, is exactly how and why we gave the #coronavirus free-range to reinvent itself via mutations and kill and disable many thousands more people. The definition of insanity is doing the same failed thing again and expecting it to work. And while the added variable is the #covidvacccine this time around, we sure as hell are letting the virus play and re-invent itself in the Western world with these premature experimental decisions to unmask indoors, pretending like we aren’t STILL in the throes of a global pandemic, despite only 26.5% of the world population receiving at least 1 dose of the jab, and only 1.1% of people in low-income countries having received at least 1 dose. The world is bigger than just the Western world. Our actions here result in devastation everywhere, including our own backyards. #hotgirl summer looks a hell of a lot like ignorant summer part 2, and your not wearing a mask indoors until the global vaccination rates increase (or we ban international travel once again to stop the spread of mutations) will result in #sickgirl fall, winter, spring, summer and on and on for yourself and many others. #wearadamnmask https://ourworldindata.org/covid-vaccinations
Today, 12 months ago, I tested + for #covid_19. I was “lucky” to get a PCR (& a +) since tests weren’t widely available, my symptoms were very severe but less-so on the respiratory side (despite #pneumonia), & I was denied my 1st test on 3/12 by a sexist, ageist doc who gaslit me into believing that even if I had #covid my age (32) & health meant that I’d be “fine”. Shortly after my symptoms escalated (as y’all know) & I was gaslit by yet another doc on 3/17 who, despite knowing that I was a high-risk patient (I vape #medicinals for bad insomnia), further questioned with “Are you sure you want this test? An elderly patient might need it more.” #guilt #😡 So I share this reel not to be sad (I’m still alive!) but as a way to say that while the days are sunnier & nights longer, #sarscov2 doesn’t care. It banks on these moments. On the moments of our letting our guard down & loosening restrictions before the masses have been vaccinated & the cases grind to a halt. Of our feeling the warm sun of spring on our skin & thinking that masks & distancing don’t apply. (They do. More so now.) #variants Covid waits for this. It eats it up because it’s smarter than us. It doesn’t have emotions or needs. It just wants to survive. & evolve. & to do what it’s done to me over the course of these past 12 months to millions more. & it doesn’t care if you’re healthy or ill, old or young, skinny or fat, rich or poor: it does what we’re supposed to be doing as a collective & only caring about its brothers & sisters (variants old & new) evolving & thriving & living their fullest lives in our fragile, temporary bodies, made of love & needs & wants. It feeds off of our weakness, & our weakness being an inability to adapt & an inability to care for another as we’re meant to. To see ourselves as a family, which we are. As one. I know this virus intimately. I felt it change & grow within me for longer than even a mother does at 12 months of this experience. It’s shown me things that have humbled me & have made me realize just how small we are. & I hope you see my fight & realize that this is as real as it gets. #longcovid is a prison & I don’t want any more cell mates.
Call it a #CovidVersary or #TraumaVersary, the @wearebodypolitic community is calling it #1year1virus and that’s exactly what March 10, 2021 is for me. It’s my 365th day of daily #covid_19 symptoms and it’ll be a reminder to me, for the rest of my life, of a day that changed me in ways that I may never be able to fully articulate. While the public longs for their prior normals, temporarily put on hold as a result of the pandemic (although some so selfishly refused *and still refuse* to honor what’s best for all of humanity), they forget about those who are grieving loved ones lost to Covid, and ignorantly forgetting about the millions like me who not only had to put their prior normals on hold, but may never get their prior normals back as a result of the organ damage and long-term complications of being a Covid survivor and a Long Covid patient. And so, from where I’m sitting, my #1Year1Virus anniversary is about chronic illness in general. I’ve shared more about my Covid fight - physical and mental health - than is normal or comfortable for a person in their lifetime, and I don’t need to revisit the details of the traumas and losses again. You all *know* I’m now partially blind, have 4+ migraines per day every day, have colitis, chronic fatigue syndrome, post exertional malaise, cognitive disorders, seizures, tremors, survivor’s remorse, depression...and on and on. From Covid. You know it all. But what this anniversary is really about for me is the MULTI-MILLIONS globally that have already, are currently, or will soon have their #1Year1Virus anniversary. And the multi-millions more that are on 10, 20, and 30 years of other chronic, under-recognized and under-supported illnesses that this human family has practically gone out of their way to ignore and sweep under the rug. What I’ve learnt this past year is that 1 person can do a lot for themselves. They can know their worth, and value and power. They can speak until people listen and find power they never knew existed. But 1 person needs 100s more to move mountains. I’ve learnt we that need each other. That’s my take away this year. I and we need each other. And we need to stop pretending that we don’t.
For my 33rd birthday I wish that the public stopped resisting reality and choosing to ignore the growing #longcovid crisis (recognizing it as the pandemic within the pandemic it is), and stopped ignoring the pleas of patients trying to offer the transparency and real-talk that we all desperately needed from our governments at the start, instead of enabling this virus to be riddled with misinformation and denialism. I wish that they saw the lessened restrictions in certain locales at a time when #covid_19 variants are posing even more risk as the profits-over-people scheme that they are. That state leaders and local shops don’t exactly care if you end up chronically ill with untreatable symptoms from this virus, let alone dead. That they understand that even those who had mild or asymptomatic cases in the acute phase are returning for urgent medical care and answers months later due to new and oftentimes serious complications arising (see: https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2). That they understand that us patients have nothing to gain by sharing our daily chronic hells other than the hope that we can knock some sense into someone and save them from catching the virus and being in our shoes. Our careers, our finances, our relationships and our physical and emotional well-being are all severely impacted and people all around us still spew false narratives about death being the only worst outcome. That they actively choose to turn a blind eye to the living death that many of us feel as a result of this new and so far incurable disease, in bodies that are young and were primarily healthy before contracting #covid. That they don’t even know a fraction of the consequences and challenges of having and surviving this virus. That our healthcare system is wholly unprepared to even treat all acute cases let alone any chronic cases of this virus at this point in time. So for my 33rd birthday I hope that no one else enables themself to be in a position where they contract #covıd and therefore become a #longhauler, also known as a Long Covid patient. Stop listening to your mother’s brother’s bestie and start listening to patients.
There is an epidemic within the medical community of doctors gaslighting women with chronic illness. While I never realized this before developing #longcovid (and even during my acute phase of #covid_19), despite having multiple doctors attribute my chronic since-age-12 severe insomnia to “anxiety”, or “emotions”, or even my sex life (I kid you not), I was utterly unable to escape this reality from day 1 of my acute fight to day 314 of my continuing chronic fight. What’s most upsetting is that although I’m new to this reality, decades upon decades of women before me have experienced this hell, and even in these modern “advanced” times, women are STILL experiencing, and without any real public acknowledgement or action being taken. We’re labeled as “dramatic” if we question further. Labeled as “attention seeking (whores)” if we advocate for help or speak up. Called “overly emotional” for being traumatized by these experiences. And deemed “the weaker sex” despite enduring so much emotional abuse and gaslighting while also being statistically more likely to have 1 or more chronic conditions, and significantly more likely to experience chronic pain. As a newcomer to chronic illness, I never thought a doctor would look at me, physically extremely unwell, and still have the audacity to tell me that it’s probably a result of anxiety/depression/nerves/etc. With blood literally coming out of my body all the while. Like, sign me up for ‘Stranger Things’ because apparently my mind is capable of making me bleed out of orifices! And I’m not sharing this for pity. That’s the last thing us chronic patients need. I’m sharing this to trigger compassion and awareness in you so that you’re (1) aware of it as a female and call it out when you do or (2) recognize the internalized sexism within you as a male, and make every effort to unlearn the biases and societal conditionings that makes you believe that women’s pains and illnesses are less real or serious because you think they’re more “emotional” and therefore more psychologically affected. This affects your girlfriends. Your sisters. Your wives. Your mothers. Your daughters. It’s life and death.
Long COVID Meets Eye Shingles
@doggface208, @stevienicks and @mickfleetwoodofficial, these cranberry dreams hit swollen faced #longcovid patients in the ER differently. Long #covid_19 and #covid -activated shingles (in the trigeminal nerve and eye) and #covıd -gifted retinal migraines and scleritis require Fleetwood Mac pumping through the airwaves (and ideally IV drips). Where’s my skateboard when I need it? (Halloween came early ya’ll...to my face. Don’t make it any scarier: #wearamask.)
Protests Hurt Covid-19 Patients . I may not have spoken as eloquently as I would’ve liked, or articulated the reasons why protests are harmful in as detailed of a way as I would’ve liked, but hopefully the emotional pain that these protesters are causing for patients will get just one supposed “patriotic” crusader to see the carelessness of their actions. . If you’re a protester watching this, I get that you believe that your government is imposing stringent restrictions upon you. I get that you feel that businesses being paused and social distancing being required is hurting citizens and their pocket books. That you think it’s an overreaction and that your civil liberties are being attacked. I get it. . I get that the issue at the core is that because businesses are shut, access to money and food are becoming increasingly limited for some. And I understand how it’s a horrifying predicament when you have a family to care for and no sense of when money will begin flowing in. . But please understand that if states are opened prematurely and without tight requirements on how to appropriately reopen in a SAFE way (via a staggered, monitored approach, etc.), getting food onto your table will be the last of your worries. . You’ll be too busy dealing with dying and chronically ill, suffering loved ones, who will have little that can be done for them because we’ve reopened states without FIRST understanding the virus. You assume a reopening is safe because we have a name and some basic, short-lived data from the virus. You think that means we understand it and are controlling it, and can predict what recovery looks like for those that get Covid-19, if they’re lucky enough to eventually recover. But you’re wrong. We are ACTIVELY learning about the virus from patients as each day progresses. . If we reopen now, more cases will flood in. More cases that will be in the same position as me: cases that are advising science, and not the other way around. . That is not what you should want for your family or yourself. That is why patiently waiting for more to be understood about this virus is imperative before any reopening. . If you want to protest, do so remotely about using taxes for social welfare needs.
COVID-19 is personal, so let’s make it personal. #thisiscovid19 . My name is Lauren and I’m 32 years-old with no pre-existing health conditions, currently on day 34 of symptoms. I am not yet classified as recovered by my state due to not being symptom-free for 24 hours straight, let alone 72 hours straight. My symptoms began around March 12, 2020 and I tested positive for Covid-19 on March 17, 2020. I’ve been sharing my daily virus experience - including symptoms, my test results, my treatments, etc. - for over 4 weeks, saved as a “Covid-19” highlight reel on my profile. . My reason for sharing both daily Covid-19 stories and this video is the following: if we truly want to understand the virus and demystify it (helping others to realize just how real and non-linear this virus is, hopefully inspiring more personal and societal responsibility), then we must SHARE. . To truly understand Covid-19 we need to hear directly from those experiencing the virus on the front lines, from both medical professionals and patients alike. That information will only better our ability to paint a true picture of “recovery” at both the patient-level and national-level, as returning to work will look differently for those who have been stricken with this virus. It will also help us to move forward as a nation with compassion and true understanding about what we can expect from our afflicted but slowly recovering workforce, and what can be expected if a diagnosis hits closer to home for you or your loved ones. . Transparency and knowledge is the best medicine that we can provide at this point, and that is something that ALL of us can contribute without relying on others to do so on our behalf. . At the end of the day this virus affects PEOPLE and it’s PEOPLE that we can relate to and learn from. It’s PEOPLE that will help to better our global understanding of this virus and it’s many facets from day 1 of symptoms to day 51 of symptoms, and surely well beyond. . Real personal stories trigger real personal accountability and awareness, and that is vital to being holistically responsible in how we approach the topic of “recovery” as both a nation and as individuals.
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