#covid long hauler

[createyourownnarrative]

As a Covid Long Hauler for almost 4 years, I have always said I feel like Covid aged more 10-20 years. Maybe there is truth to this in the brain? This is terrifying. Just furthers my depression that years were robbed from my life. Robbed. Stolen. Shaved off.

Article Below:

[crazycatsiren]

15 March 2023 is the first International Long COVID Awareness Day.

We will not be left behind and forgotten.

We will be strong together.

We will fight for a future for us.

[fanartandfanfiction]

Send good vibes today, guys. My disability hearing is in a few hours. It’s my last chance to plead my case.

[myalgicencephalomyelitiscfstom]

New review article by 2 eminent US physician scientists [Anthony Komaroff & Ian Lipkin]:

ME/CFS & #LongCOVID share similar symptoms & biological abnormalities: road map to the literature

Free fulltext: https://www.frontiersin.org/articles/10.3389/fmed.2023.1187163/full

[theradicalscholar]

🌡️⚖️ Bacterial Pneumonia: Lessons from the Past, Relevance to COVID-19 🦠🔍

The 1918 influenza pandemic taught us about the significant role of bacterial pneumonia, overshadowing the primary viral infection. This knowledge remains relevant to COVID-19.

🧪 Unveiling the Evidence: Autopsy findings showed that secondary bacterial infections were the primary cause of death during the 1918 pandemic.

⚙️ Viral-Bacterial Interplay: Combining influenza viruses with bacteria led to severe disease, highlighting their synergistic effects.

💡 Pandemic Preparedness: Recognizing the importance of bacterial pneumonia is vital in preparing for future outbreaks. Preventing, diagnosing, and treating bacterial pneumonia should be prioritized.

😷 Finding Balance: While masks are essential in curbing the spread of COVID-19, excessive and indiscriminate usage may have drawbacks. Research has raised concerns about certain mask types potentially increasing respiratory infections.

💪 Navigating Complexity: We need a comprehensive approach that balances mask usage with overall health considerations to create a resilient society.

🌍🤝 Building a Healthier Future: By learning from history, we can prioritize public health, prepare for future pandemics, and minimize unintended consequences. Let's stay vigilant and #StopTheSpread.

[talkativetrashpanda]

So I was in therapy earlier today, and I was explaining to my therapist that right now everything just felt kind of numb. We’ve had so much happen in such a short time span that I think my emotions just shut down. And Jenny, being the incredible therapist that she is, managed to find the right spot in my brain and crack it open like a walnut.

It started very simply. I said something along the lines of “I’m tired of saying it’s fine when it’s not.” Jenny looked at me with a cock of her head and said “so tell me what’s not fine.”

And holy shit.

I haven’t really cried over much, because again, my emotions went into shutdown mode. But once I started listing things, the dam broke loose.

It’s not fine that my dog isn’t here anymore. She was only nine and it’s not fine at all that she suffered like she did.

It’s not fine that I’m sick again after being well for so long. I’m terrified of how it’ll set me back. It’s not fine that, even though I’m doing all the things I’m supposed to do, I still managed to get sick.

It’s not fine that I’ve become my family’s therapist, a mediator between my parents. It’s not fine that I’ve been forced into the middle.

It’s not fine that I just turned 27 and I’m nowhere near where I thought I’d be. It’s not fine that Covid completely, totally fucked me over and I’m still sick three years later. It’s put my life on pause and I’m missing this time in my life.

It’s not fine that I have to stand up in court and argue that I’m disabled. That I have to prove myself to a judge and a board of doctors and who knows. It’s not fine that, despite numerous forms and letters from multiple doctors, they still don’t believe me. It’s not fine that I have to fight for my disability to be recognized because I look fine on the outside.

It’s not fine that my aunt was finally free from lifelong abuse, only to have a stroke and dementia. She had less than one year of freedom. It’s not fine talking to her on the phone and trying not to cry because she doesn’t know who I am or where she is.

It’s not fine that the last three years have been a never ending shitstorm of pain and trauma. It’s not fine that I’ve been hit with tragedy after tragedy and I’ve taken more than my fair share. It’s not fine that NONE OF MY FRIENDS understand what I’m going through, or even bother to check on me half the time.

It’s not fine that the world is moving on without me. There are still people that don’t think Covid existed. They weren’t touched by it when I’m still fighting three years later.

So much is not fine and I’M not fine and I’m tired of pretending and telling myself I am. I’m not fine in the slightest and somehow I have to keep going forward like it is. I’ve had no time to process or grieve any of the losses because the hits just keep coming.

It’s fine to not be fine.

[blindedbythedarkness]

Paralyzed

It turns out that it is in fact possible to feel paralyzed without ever losing the ability to move any part of the body. That is where I find myself now, and have done frequently over the past few months.

I'm lying on my bed, one hand clamped firmly over my eyes to block out the light since the curtains just aren't enough. In the distance I hear cars passing on the road and the persistent gnawing of the small caged pets I keep on their afternoon snack. I cannot move.

Every possible action I can take from here is unbearable. Reading? Looking at a screen? Watching a video? Listening to a podcast? An audio book? It all hurts my eyes and ears just considering it. Getting up and doing something is absolutely out of the question, and probably part of what made me crash this hard in the first place.

I want to scream. I want to cry. I want to yell and lie on the ground and beat it with my fists like a toddler. But I can't, because that- the sound, the light, the emotional exhaustion- would hurt too much as well. I'm stuck.

I don't want to sleep though. Not again. I've already slept for 12 fucking hours. I'm not tired, fatigued yes, but I don't feel sleepy. If I allow myself to drift off I'll just feel even groggier when I wake up and I'll have fucked up my sleep schedule. No, I can't sleep. I mustn't sleep. But it's so hard not to when all I can do is close my eyes and lie here, waiting for time to pass.

My body can move but I'm paralyzed by my lack of options. So instead I think and write this post in my head. I find a small amount of solace in even the anticipation of writing about this prison. But for now that's all I can do.

[pandemichub]

A wonderful segment on long covid. It mentions the ongoing deaths happening each week, unknown duration of long covid, it has physiological evidence and signs (and is not a psychological condition, though it certainly exacerbates or can cause them to manifest. Long covid is very distressing).

The healthcare and benefits bog people are mired in with this disease, which is extra important. Still watching to see if intersectional healthcare disparities and things like media abuse, gaslighting and biases are brought up. Still a very good piece of journalism.

That there is more than dying of covid to be concerned about and if appropriate attention and resources are given, research, treatment and preventing the spread and more people acquiring long covid, so much is possible/promising.

[zpublicc]

Narrative Inquiry

Hi all,

I am a doctoral student at Rutgers, Newark, NJ, in the school of public affairs and administration (SPAA). I am conducting a research project regarding the perspective of service use by people with long COVID.

This research will consist of interviews or electronic diary keeping. By doing this I hope to conduct a narrative inquiry and share the lived experience of those who have long COVID.

These research methods are being used to understand individual experiences with (1) seeking services (motivation), (2) what the barriers to service are, and (3) how the adequacy of those services is judged.

Individuals must be over the age of eighteen, English speaking, and self-identify as being a person with long COVID. Interviews will be conducted over ZOOM, or by phone. Interviews will take place until mid-April. The interviews should last from 30-60 minutes. Interviews will be used for a narrative inquiry.

Those who would rather complete electronic diary entries will be given prompts to complete within a week, at which point responses should be sent via email.

If you have any questions, please feel free to DM me. I will respond as quickly as I can.

What is a narrative inquiry?: https://deakin.libguides.com/qualitative-study-designs/narrative-inquiry#:~:text=Definition,ordered%20into%20a%20chronological%20narrative.

[chronically-autistic-dinosaur]

Today is #nationallongcovidawarenessday. I’ve been a long hauler since 2020 and my life has changed so much in the past 4 years. I can no longer do some things and others are much more difficult to do.

I deal with an array of symptoms every day. These symptoms can be anything from fatigue, nausea, headaches, joint pain, shortness of breath, congestion, a sore throat, a cough. They fluctuate in severity day by day. Some days I stay in bed, while others I’m able to go out.

Long COVID has disabled me. I can no longer work full time. As such, I can’t live on my own anymore. Long COVID took away my complete independence.

I am just one of the millions worldwide affected by long COVID. We are not rare.

[emilemily]

Fucking covid and all it’s bullshit

I did everything they told me to do. Got the shot as mandated by my old compliance job and got all the boosters

And all it did

Was make it so that

I can’t ride my bike

Anymore

Because they say this is either caused by covid or by the vaccine both of which I had

So which is it?

Did medicine do this to me or did the virus?

Cuz I’d love to know why athletes with king Covid who used to be able to run marathons can barely make it up the stairs now

I’d love to know why I can’t stand in the kitchen chopping veggies for 10 minutes without black and blue legs, racing heart and dizzy vision

I’d LOVE TO KNOW

If this is god punishing me for not doing more with my life when I had the chance

[createyourownnarrative]

[crazycatsiren]

For many, being sick has been the new normal since the pandemic began.

As semblances of life returned, and the world moved on, we got left behind.

Medical professionals don't know what to do, because this is all so new.

So we wait. And hope. For what, we don't even know. But we know we don't want to be forgotten. We're still here.

[fanartandfanfiction]

I know I made a side blog for personal posts but I have to share because I’m overflowing with happiness!

Almost a year ago, I had double Covid pneumonia and I thought I was going to die. After that I had a lot of scar tissue in my lungs and everything was an enormous struggle.

I just saw my pulmonologist (lung doctor) today and he said he’s proud of me. My lungs are clearer than ever. I’ve lost weight. I’m getting active again.

I still have some long Covid struggles, obviously, but I’m getting better and that is something that felt impossible. So to my fellow Covid longhaulers, don’t give up. Keep fighting ❤️ because things can get better.

[myalgicencephalomyelitiscfstom]

I thought this was a good article. There is a lot of discussion of ME/CFS in it.

I've copied a few extracts below.

"Lucinda Bateman, founder and medical director of the Bateman Horne Center in Salt Lake City, is one of a small number of ME specialists in the county. She has been treating and researching the illness for more than three decades. “I can tell you from our close assessments that many people with long COVID become severe enough and chronic enough to meet these criteria [for ME/CFS],” she says. “So I would consider them SARS-CoV-2 induced ME/CFS.” --- Outdated therapies

Because so many physicians are uninformed about ME, some at long COVID clinics prescribe therapies that have been proven to be harmful to patients who experience post-exertional malaise (PEM). Graded exercise therapy (GET)—a controversial form of physical therapy for ME and long COVID which slowly increases exercise over time— worsens patients’ symptoms who experience PEM. “Graded exercise therapy implies that you can exercise yourself into fitness and resolve the illness,” Bateman says. “When in reality, that’s not the case.” --- "In the meantime, Bateman recommends long COVID patients do the same thing she has been telling ME patients for years. “Become very well-informed yourself,” she says, advising individuals to read broadly about their own condition from ME non-profits, patient-led research groups, and papers written by ME specialists. “Secondly, work with a provider that you can communicate with and learn about long COVID together. It’s easier to train up a trusted doctor than to go searching for [ME specialists] when the numbers are still so low.” " ---

[ernestocamachopuga]

Que siempre sí

Que siempre sí 07/07/23 Estimados miembros de Akasha Comunidad: 

Normalmente no escribo cuando está cerrado el chat (recuerden que abre solamente entre las 10 am y las 4 pm - tiempo del centro de México - de lunes a viernes) porque, por un lado, es sano desconectarme de estos temas, y por otro, al estar cerrado el chat, no pueden comentar ustedes. Sin embargo, hay algunas noticias que son tan, pero tan suculentas, que me rebasan las ganas de compartirlas con ustedes. 

¿Se acuerdan del 'COVID largo' ("long COVID", en inglés)? Ese "síndrome" que muchos farmacoproxenetas médicos estuvieron duro que dale diciendo que las inoculaciones COVID lo prevenían? Expliqué algunas cosas sobre el COVID largo en: https://t.me/akashacomunidad/1346, https://t.me/akashacomunidad/1050, https://t.me/akashacomunidad/1051 y https://t.me/akashacomunidad/737. Específicamente, expliqué que lejos de 'proteger' contra ese COVID persistente, esas inoculaciones podían propiciarlo. Les aseguro que no lo decía por tener dotes de oráculo griego. Lo decía porque cada vez había (y sigue acumulándose) evidencia de la patogenia de estos productos inyectables, de su interacción a nivel molecular, celular y tisular. Al ocasionar una desregulación inmune y estados auto inflamatorios, se llega justamente a esos efectos 'persistentes'.

Bueno, pues resulta que hace un par de días apareció en la revista Science una nota editorial escrita por Voegel y Couzin-Frankel, titulada (traducida del inglés) "Asociación rara entre vacunas de coronavirus y enfermedad tipo Covid largo comienza a ganar aceptación" (https://www.science.org/content/article/rare-link-between-coronavirus-vaccines-and-long-covid-illness-starts-gain-acceptance). [Alerta de sarcasmo; favor de leer las siguientes palabras con voz teatral de sorpresa y horror] "¿Cómo? No, no puede ser. Si de eso nos protegían. Si lo dijo una dentista muy confiable...¡ya no se puede confiar en nadie!".  

Pues, ¿qué quieren que les diga? Supongo que hasta los más empedernidos defensores de estos productos en algún momento tiene que dejar de ignorar lo que está pasando, aunque sea a regañadientes. Así que, ni más ni menos, Science ha sacado esa nota editorial. Aclaro que no es que me merezcan demasiado respeto las revistas "prestigiosas" como Science, Nature, Lancet y demás, en estos tiempos, pero, siendo objetivos, no es cualquier cosita que aparezca ahí esta nota. Eso sí, siguen fieles en su escrito a la letanía de que estos productos han "salvado a millones", lo cual no tiene sustento alguno (más allá de estudios de modelaje que ya he explicado aquí: https://t.me/akashacomunidad/2383, https://t.me/akashacomunidad/2384, https://t.me/akashacomunidad/2385, https://t.me/akashacomunidad/2386), pero me pareció interesante que aclararan que ellos ya habían avisado sobre esto de la relación de estos inyectables con el COVID-largo a inicios de 2022 (no sé por qué me acordé repentinamente de una frase sobre barcos que se hunden y simpáticos animalitos peludos que abandonan dicha embarcación) ¡Bien por el equipo editorial de Science por ser tan precoces que solamente se tardaron un año en avisar lo que se sabía que podía ocurrir desde al menos 15 meses antes! Para mí que se ganan el ilustre premio Don Rodrigo Díaz de Carreras. Lástima que ya se desarticuló Les Luthiers, quien podría habérselos otorgado.

Comprenderán, supongo, el porqué me pareció suculento compartir con ustedes esta nota. Ahora sí, a seguir disfrutando de mi guitarra.

Karina AW