#covid long hauler

[i-amusemyself]

PSA: Covid Effects and Complications

Alright fekkers this is how we’re doing public health announcements now that society is collapsing :))

This isn’t a post to tell you to avoid it, but to ask you to read the headings and make sure you make an informed decision if you wanna go out and get infected. If you do take risks, remember to avoid very young/old/pregnant/unwell/vulnerable people, test regularly and wear a mask (yes, they work).

Covid is Not Just A Respiratory Illness

COVID-19 routinely affects organs throughout the body, not just the respiratory system, including the brain, heart, liver, GI tract, endocrine system and skin (Gupta et al., 2020)

Covid can be seen as a blood clotting disorder masquerading as a respiratory illness. (Janardhan et al., 2020)

Covid Causes Brain Damage

Mild Covid infection shows significant orbitofrontal cortical atrophy (shrinking of parts of the brain) and cognitive decline (Crunfli et al., 2022)

Mild COVID-19 infection can cause impaired neurogenesis (nervous tissue growth), myelin and oligodendrocyte (nerve insulation) loss and increased neurotoxic molecules around the central nervous system (Fernández-Castañeda et al., 2022 *preprint)

MRIs of 401 patients done before and after Covid infection showed reduction in global brain size, grey matter loss (orbitofrontal cortex and parahippocampal gyrus) and cognitive decline. (Douaud et al., 2022)

COVID increases the risk of neurodegenerative disorders- Alzheimer’s disease risk is 3.5x increased; Parkinson’s disease risk is 2.6x increased; ischaemic stroke risk is 2.7x increased and intracerebral haemorrhage (bleeding in the brain) risk is 4.8x increased. (Zarifkar et al., 2022)

Risks of cognitive deficit, dementia, psychotic disorders, and epilepsy or seizures are increased for at least 2 years following Covid infection. (Taquet et al., 2022)

In 25% of mild Covid cases, visuocontructive cognitive deficits are seen, associated with changes in brain structure and metabolism. (de Paula et al., 2022)

Hospitalised Covid patients cognitive loss is similar on average to that sustained with 20 years ageing, and equivalent to losing 10 IQ points. (Hampshire et al., 2022)

People reportedly recovered from Covid show decreased intelligence and significant cognitive deficits. (Hampshire et al., 2021)

Covid Causes Alzheimer’s-like Pathology and Accelerates Existing Alzheimer’s Disease

Covid invades cognitive centers of the brain and induces Alzheimer’s-like neuropathology (Shen et al., 2022)

Covid is associated with accelerated progression of Alzheimer’s disease (aaic.alz.org) 

Covid produces proteins that form cytotoxic aggregates which damage neuronal cells, which parallels Alzheimer’s disease mechanism (Charnley et al., 2022)

COVID increases the risk of neurodegenerative disorders- Alzheimer’s disease risk is 3.5x increased; Parkinson’s disease risk is 2.6x increased; ischaemic stroke risk is 2.7x increased and intracerebral haemorrhage (bleeding in the brain) risk is 4.8x increased. (Zarifkar et al., 2022)

Risks of cognitive deficit, dementia, psychotic disorders, and epilepsy or seizures are increased for at least 2 years following Covid infection. (Taquet et al., 2022)

Covid Causes Kidney Damage

Mild Covid infection is associated with increased risk of kidney damage (Bowe et al., 2021)

Covid infection triples risk of End Stage Kidney Disease, requiring dialysis or kidney transplant (Bowe et al., 2021)

Covid Causes Diabetes

Covid patients have a 40% increased risk of being diagnosed with diabetes after first infection (Xie et al., 2022)

Covid infection is associated with an 81% increase in Diabetes incidence for 12+ weeks following infection (Rezel-Potts et al., 2022)

Mild Covid infections increase risk of Type 2 Diabetes development (Rathmann et al., 2022)

Covid infection leads to an average of 42% increased risk of Type 1 Diabetes across all ages. Risk increases most in pediatric patients- by 584%. (Quedan et al., 2022)

Covid Causes Cardiovascular Illness

Covid infection, even when mild, substantially increases risk of cardiovascular illness up to at least 1 year later (Xie et al., 2022)

Capillary density (how many small blood vessels are present) is reduced by 41% in sufferers of Long Covid 18 months after Covid infection (Osiaevi et al., 2022)

Acute Covid infection results in 6x increase in cardiovascular diagnosis; 11x increase in pulmonary embolism (blood clot in lung); 6x increase in atrial arrhythmias (abnormal heartbeat); 5x increase in venous thromboses (blood clot in vein). (Rezel-Potts et al., 2022)

A spike protein found on Covid-19 virus particles uses the body’s immune response to damage and inflame heart muscle cells. (heart.org)

People with Covid exhibited increased risks and 12-month burdens of incident cardiovascular diseases, including cerebrovascular disorders, dysrhythmias, inflammatory heart disease, ischemic heart disease, heart failure, thromboembolic disease and other cardiac disorders. Risk were evident even in those without prior cardiovascular disease. (Xie et al., 2022)

Risk of stroke more than doubles even with mild or asymptomatic Covid infection. Median time of stroke is 2 months after Covid diagnosis. (Tu et al., 2021)

Covid infection increases heart attack risk by 3-8x and stroke risk by 3-6x (Katsoularis et al., 2021)

Covid infection increases risk of deep vein thrombosis, pulmonary embolism and bleeding in the months following acute illness (Katsoularis et al., 2022)

Long Covid is associated with presence of microclots throughout the body. (Pretorius et al., 2021)

Long Covid patients may face an increased risk of abnormal blood clotting. (uclh.nhs.uk)

Covid Accelerates Biological Ageing

Accelerated biological ageing is seen in Covid infection (Cao et al., 2022)

Covid Damages the Immune System

Covid causes T-cell exhaustion, meaning the immune system is less able to fight off pathogens (Loretelli et al., 2021)

Previous infection with earlier SARS2 strains can lead to impaired immune responses to Omicron (Reynolds et al., 2022)

Covid infects and kills T-lymphocytes (key cells of the immune system), causing low T-lymphocyte counts 1(Guan et al., 2020), 2(Shen et al., 2022)

Long Covid patients show reactivation of latent Epstein-Barr (can cause MS) and Varicella Zoster (can cause shingles and Ramsey Hunt syndrome) viruses (Klein et al., 2022 *preprint)

2.8% of Long Covid patients reported Varicella Zoster Virus reactivation, leading to shingles, following Covid infection. Primary risk factors for VZV reactivation are age and immunodeficiency. (Davis et al., 2021)

Covid infection causes immunodefiency in recovered patients by downregulating a specific protein on B Cells (a type of immune cell). (Jing et al., 2021)

Covid Causes the Body to Attack Itself (Autoimmunity)

Covid causes production of autoantibodies which target the immune system, vascular cells, coagulation factors and platelets, connective tissue, and organ systems, including lung, the central nervous system compartment, skin, gastrointestinal tract and other tissues. (Wang et al., 2021)

Asymptomatic Covid infection can lead to severe Ulcerative Colitis (an inflammatory bowel disease). (Mora et al., 2022)

Mild Covid infection can produce significant levels of autoantibodies for 7+ months. (Bhadelia et al., 2021)

Covid infection precedes new appearance of autoimmune and inflammatory diseases. (Galleoti and Bayry, 2020)

Covid infection linked to development of vasculitis, arthritis, lupus and sarcoidosis. (Gracia-Ramos et al., 2021)

Autoantibodies linked to Lupus, Rheumatoid Arthritis, Guillain-Barré syndrome, immune thrombocytopaenia and autoimmune haemolytic anaemia found in patients following Covid infection. (Moody et al., 2021)

In a group of non-hospitalised healthcare workers with Covid, 54% tested positive for autoantibodies- these targeted skin, smooth muscle, neutrophils (a type of white blood cell of the immune system) and gastric parietal cells (cells in the gut). (Richter et al., 2021)

Covid May Affect Both Male and Female Fertility

COVID-19 virus can be found and continues to replicate in the testes even after death (Costa et al., 2022 *preprint)

COVID-19 infects the testes and damages spermatogenesis (sperm production) (Ma et al., 2020)

Covid virus particles found in penis tissue of men infected 6-8 months earlier, who later experienced erectile dysfunction (Kresch et al., 2021)

Study shows total sperm number lower in men infected with Covid at 3 month follow up (Best et al., 2021)

Testes of Covid patients show significant seminiferous tubular injury and reduced Leydig cells- cells that produce testosterone. (Yang et al., 2020)

11 of 26 (42%) men with mild/moderate Covid infection showed incidental (asymptomatic) epididymitis on Doppler ultrasound - a condition that can cause infertility (Carneiro et al., 2021)

A case of premature ovarian failure due to Covid infection (Madaan et al., 2021)

Another case of premature ovarian insufficiency in a 34-year-old following Covid infection (Wilkins and Al-Inizi, 2021)

Ovarian injury, including declined ovarian reserve and reproductive endocrine disorder, can be observed in a study of women in China infected with Covid. (Ding et al., 2021)

Study finds men who had seemingly fully recovered from Covid infection developed decreased sperm count and motility and abnormally shaped sperm. (Ghosh et al., 2022)

Covid Causes Erectile Dysfunction

Covid virus particles found in penis tissue of men infected 6-8 months earlier, who later experienced erectile dysfunction (Kresch et al., 2021)

A Long Covid survey found 15% of men reported sexual dysfunction and 3% reported a decrease in genital size. (Davis et al., 2021)

Prevalence of erectile dysfunction 3x as common in men after Covid infection (28% vs 9% in controls) (Sansone et al., 2021)

Prevalence of erectile dysfunction in Thai men reported as 65% following Covid infection (Harirugsa et al., 2021)

Another study showing risk of erectile dysfunction triples following Covid infection. (Katz et al., 2021)

Study finds that Covid infection leads to 6-fold increased risk of erectile dysfunction, which worsens men’s mental health. (Hsieh et al., 2022)

Covid Causes Autonomic Nervous System Dysfunction

30% of 4000 Long Covid patients met the criteria for a diagnosis of Postural Orthostatic Tachycardia Syndrome, a type of dysautonomia (Davis et al., 2021)

Dysautonomia (autonomic nervous system dysfunction) may be responsible for fatigue and hypoxia in Long Covid patients. (Barizien et al., 2021)

Covid infection frequently causes abnormalities in autonomic nervous system tests, as well as worsening pre-existing dysfunction. Abnormalities included orthostatic intolerance, fainting, heachaches, burning pains, excessive sweating and lightheadedness. (Shouman et al., 2021)

67% of Long Covid patients have moderate-to-severe autonomic dysfunction, regardless of severity of initial Covid infection. (Larsen et al., 2022 *preprint)

Covid infection could result in gastric dysmotility and paralysis (stomach and intestines become unable to move food through). (Coles et al., 2022)

Covid Can Seriously Harm Children

SARS2 causes increased hospital admissions, mortality rate and absolute numbers of deaths in children, compared to Influenza (Shein et al., 2022)

Asymptomatic infection in children can lead to a serious, multiorgan hyperinflammatory syndrome (Riphagen et al., 2020)

An epidemic of hepatitis in healthy children could be linked to previous COVID-19 infection (science.org)

Pulmonary dysfunction persists even in children considered to be recovered from Covid (Heiss et al., 2022 *preprint)

Covid leads to a 3x increased risk of psychotic disorders in children (Taquet et al., 2022)

Children are twice as likely to develop epilepsy or seizures following Covid infection, compared to following other respiratory infections (Taquet et al., 2022)

Children are at an increased risk of epilepsy, encephalitis, nerve, nerve root and plexus disorders up to at least 2 years after Covid infection (Taquet et al., 2022)

Intracranial (brain) bacterial infections have increased during the Covid pandemic, occuring during or just after Covid infection. One Michigan children’s hospital reports a 236% increase. (Khuon et al., 2022)

235,000 children in England have Long Covid symptoms lasting 12+ weeks that affect their daily life (ONS.gov.uk)

21% of Year 13 pupils missed 4+ weeks of school due to Covid for the 21/22 academic year in England (suttontrust.com)

Children and teens who’ve had Covid are at greater risk for blood clots, heart problems, kidney failure, and Type 1 diabetes (Kompaniyets et al., 2022)

5.2 million children have lost a parent or caregiver to Covid infection. (Unwin et al., 2022)

Covid infection leads to an average of 42% increased risk of Type 1 Diabetes across all ages. Risk increases most in pediatric patients- by 584%. (Quedan et al., 2022)

Covid Can Endanger Pregnancy and the Growing Baby

Covid infection during pregnancy increases risk of preterm delivery (Edlow et al., 2022)

Covid infection at delivery increases risk of stillbirth (DeSisto et al., 2021)

Covid infection during pregnancy increases risk of neurodevelopmental disorder diagnosis in babies by 2.17x during first year of life (Edlow et al., 2022)

Risk of severe Covid infection is higher in pregnant women. (Rad et al., 2021)

Newborns born to mothers who had recovered from Covid 10+ weeks prior to birth show viral mRNA and proteins in their stool and signs of intestinal inflammation. (Jin et al., 2022)

Covid infection destroys the placenta, starving the baby of oxygen, resulting in increased risks of stillbirth and neonatal deaths. (Schwartz et al., 2022)

Covid Can Lead to Development of New Allergies

Mast cell activation syndrome (MCAS) may be triggered by Covid infection, resulting in new allergies and risk of anaphylaxis. (Afrin et al., 2020)

Mast cell activation symptoms are increased in Long Covid (Weinstock et al., 2021)

Covid Worsens Mental and Psychological Health

Covid diagnosis associated with increased risk of mental health diagnosis and neurocognitive decline (Xie et al., 2022)

Risks of cognitive deficit, dementia, psychotic disorders, and epilepsy or seizures are increased for at least 2 years following Covid infection. (Taquet et al., 2022)

Covid Reinfection is Common and Increasingly Detrimental to Health

Reinfection with Covid increases risk of hospitalization, death and long covid by more each time 1(Al-Aly et al., 2022 *preprint), 2(World Health Organisation)

Covid reinfections are common. Mean time between 1st and 2nd infection is 79 days, and between 2nd and 3rd infection is 65 days. (Al-Aly et al., 2022 *preprint)

Covid reinfection is possible as soon as 19 days after initial infection. (Ren et al., 2022)

Long Covid is Common, Serious and Potentially Disabling

1 in 5 (20-30%) develop a new health condition following Covid infection (Bull-Otterson et al. 2022)

Just below 1 in 10 (9.3%) triple vaccinated people are not recovered 4-8 weeks after Omicron infection in the UK (ONS.gov.uk)

1 in 7 (14%) of 11-18 year olds have symptoms 15 weeks after COVID-19 infection (Stephenson et al., 2021)

Long Covid causes disability and unemployment (theguardian.com)

Two million days of healthcare staff absences were lost to Long Covid during the first 18 months of the pandemic in England (the guardian.com)

On average, healthcare staff absent with Long Covid are off for more than 80 days in England (theguardian.com)

A US Long Covid group reports that 44% of those affected are out of work (longhauler-advocacy.org)

235,000 children in England have Long Covid symptoms lasting 12+ weeks that affect their daily life (ONS.gov.uk)

21% of Year 13 pupils missed 4+ weeks of school due to Covid for the 21/22 academic year in England (suttontrust.com)

The proportion of people unemployed and not seeking work due to Long Covid has doubled in the past year in the UK (theguardian.com)

Long Covid survey of nearly 4000 finds 45% required a reduced work schedule and 22% could not work due to illness (Davis et al., 2021)

88% of Long Covid sufferers experience cognitive dysfunction and memory problems (Davis et al., 2021)

80,000 people estimated to have left employment due to Long Covid by March 2022 in UK (Reuschke and Houston, 2022)

2.9 million people of working age in the UK have had, or currently have, Long Covid (Reuschke and Houston, 2022)

Long Covid has over 200 symptoms spanning 10 organ systems. (Davis et al., 2021)

Graph via @davidsteadson on Twitter

Vaccination Does Not Fully Prevent Long Covid

16% of Covid infections lead to Long Covid after 3 vaccinations (Azzolini et al., 2022)

Just below 1 in 10 (9.3%) triple vaccinated people are not recovered 4-8 weeks after Omicron infection in the UK (ONS.gov.uk)

Vaccination only reduces risk of Long Covid by 15%. (Al-Aly et al., 2022)

Covid Persists in the Body after Initial Infection

Covid can persist throughout the body and brain even following mild/asymptomatic infections, for at least 230 days (Chertow et al., 2021 *preprint)

COVID-19 can persist within the gut for at least 7 months after infection 1(Gaebler et al., 2021), 2(Natarajan et al., 2022)

Residual COVID-19 virus has been found in the appendix and breast tissue, 175- and 462-days post-infection, respectively (Goh et al., 2022 *preprint)

COVID-19 virus can persist in the eyes after initial infection (Armstrong et al., 2021)

COVID-19 virus can be found and continues to replicate in the testes even after death (Costa et al., 2022 *preprint)

Covid virus particles found in penis tissue of men infected 6-8 months earlier, who later experienced erectile dysfunction (Kresch et al., 2021)

Viral Persistence Can Cause Serious Illness Many Years Later

We do not know the long term effects of Covid Infection and Persistence.

Persistent Hepatitis C infection increases risk of Hepatocellular carcinoma (liver cancer) (Mitchell et al., 2015)

Persistent Human Papillomavirus (HPV) infection causes cervical cancer (Sudenga et al., 2013)

Persistent HIV infection leads to immunodeficiency and AIDS (Pauza, 1988)

Persistence of Epstein Barr Virus (EBV) can cause development of multiple sclerosis (Ruprecht, 2020)

Persistence of varicella zoster virus (VZV), which causes chickenpox, can result in shingles and Ramsey Hunt Syndrome (Gershon et al., 2015)

These effects of Covid are not easy to learn about, but it is essential that people know the risks. This is not fearmongering- it is not “what if”s and “maybe”s- these are events that are happening right now, around the world.

#psa #public health #covid #covid infection #coronavirus #coronavirus infection #covid-19 #covid19 #sarscov2 #sars-cov-2 #pandemic #covid pandemic #coronavirus pandemic #lockdown #pandemic response #long covid #covid long hauler #pasc #clinically vulnerable #clinically extremely vulnerable #research #covid research #wear a mask #public information #public health information #world health organisation #cdc #ukhsa #covid response #viral persistence

[createyourownnarrative]

How do I navigate this new life? So many questions plague my mind. Ironic. What happens when you start to question yourself? What do you do, when you can’t even trust yourself anymore? Petrified on a daily basis. Do I have a future left to salvage; my career, mygoals. I’ll say one thing. I didn’t expect to lose my whole identity. Profound loss. I grieve everyday. Not only mourning my former life and identity and plans, health, and body, but also fearing that I may never recover.

The last 3 years, has completely changed everything, including, the now, lack of trust and faith in our healthcare system. It’s difficult enough dealing with the social stigma, not being believed, gaslit, dismissed, invalidated, and blamed for my condition. But who do you go to, when your doctors can’t even help you, and some just won’t, and many just aren’t equipped or educated to deal with the new post viral condition. It’s been an enigma. The data and research has been sluggish, and US government funding is minimal.

The world moves on, but where does that leave about, what was it…17….or 22 million Americans? The data varies, but the scale is large. Massive. The largest mass disabling event in HUMAN history. And everyone ignores that it exists. Officials silence scientists and doctors, government censors social media, one minute it’s real, the next? no big deal. Inconsistency. Negligence and Lies.

Long Haulers of the world, does anyone else feel betrayed? Betrayed by people we are supposed to trust to have our best in mind, especially when it comes to our health institutions? I do. Everyday. I feel cheated and robbed of time, years off my life. All because of MONEY. Greed. Capitalism. I said it. The fucking cunt elephant in the room. Think of how much money certain people made during the pandemic? (If you know, you know) Of course I feel robbed. Of my life. And millions of others.

This is murder, irresponsible, and negligent.

And all WE want to do is FEEL better. Not be sick anymore so we can continue our lives. All while they continue to censor us.

#chronic pain #chronically ill #covid #covid isn't over #covid19 #create #long covid #art therapy #chronic illness #long haul #covid long hauler #post covid syndrome #post covid #covid pandemic #covid 19 #covid conscious #covid vaccine #coronavirus #virus #chronic fatigue #chronic #send help #betrayed #they lied

[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.

#disabled #spoonie #cripple punk #long covid #long covid awareness day #chronic illness warrior #long haulers unite #covid long hauler

[fanartandfanfiction]

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

#invisible disability #disability #disabled #long covid #covid long hauler

[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

#myalgic encephalomyelitis #chronic fatigue syndrome #long covid #covid long hauler #post viral syndrome

[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.

#psa #public health #covid #covid infection #coronavirus #coronavirus infection #covid-19 #covid19 #sarscov2 #sars-cov-2 #pandemic #covid pandemic #coronavirus pandemic #lockdown #pandemic response #long covid #covid long hauler #pasc #clinically vulnerable #clinically extremely vulnerable #research #covid research #wear a mask #public information #public health information #world health organisation #cdc #ukhsa #covid response #viral persistence

[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.

#chronic illness #long covid #personal blog #grief #covid isn't over #covid long hauler #trauma #not fine #mental health #mental health issues #mental health blog

[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.

#paralyzed #paralysed #pain #chronic pain #myalgic encephalomyelitis #cfs/me #me #cfs #chronic illness #long covid #covid long hauler #pasc #wear a mask #covid is airborne #torture #living hell #covid isnt over #disabled

[covidlongbrawler]

Both my parents just tested positive for COVID-19. And since I've been around them for the past two weeks, I most likely have it too. I have a sore throat already.

I'm trying so damn hard not to panic. What if all my long COVID symptoms come back? I worked so hard to get to this point, where I can walk around and stand unaided and now it might be gone. Even though we're all vaccinated and tested. Even though we've been wearing masks!

And on top of that, I'm going to miss Yom Kippur services. I'm going to have to do the biggest holiday of the year online. I was pretty close to my rabbi who is breast-feeding. If I gave it to her, I'll be heart broken.

I was going to visit my girlfriend this weekend and then go pick out pumpkins next week like a normal couple. I just wanted to do dumb fall things and now I have to be quarantined.

I hate this! I hate all the stupid assholes who won't get vaccinated and won't wear masks! I hate all the politicians who put "opening the country back up" before people's lives. I hate all the people who deny science.

I can't get my heart rate down. I'm going to take some Klonopin and hopefully that'll knock me out enough to sleep.

#personal #chronic illness #covid long hauler #covid 19 #long haul covid #coronavirus #covid #i hate this!!! #rants

[chronically-autistic-dinosaur]

#chronic pain #chronic illness #long covid #chronic fatigue syndrome #MCAS #my chronic life #covid long hauler

[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.

#Covid-19 #Covid 19 #Sars Cov 2 #Long Covid #Long haul covid #Covid long hauler #Post viral #Viral persistent #Viral persistence #Chronic illness #Public Health #PBS Newshour #PBS #Youtube

[alanshee-keeper-of-realms]

Update on my health not Ninjago

So remember when I said I was hoping that I would be 35 before I was in a wheelchair? Yeah make that nearly 24.

Today my neighbor was super kind and just gifted me my first wheelchair and no I didn't even ask him I just went over to his home because he himself is a double amputee and I went to the zoo recently and couldn't even get through it without needing to rent one of the wheelchairs which was a horrible experience on my hands I told him that I was looking for a manual wheelchair and did he know where I could possibly start well he told me to hold that thought and follow him to the back room

He just had this really nice wheelchair that he didn't like it had just been sitting in his back bedroom for the longest time and he told me to take it.

Yes I still am in shock and still am incredibly grateful for him and his kindness in doing that, here's a picture of it with the armrests removed he took off with the seat cushion haha so I will need to replace that and then make some straps for the footrests it's a lot better in the long run anyway because I can actively move my legs.

So now if you see on my social medias me in a wheelchair it is because I am an Ambulatory Wheelchair User myself. I am also a covid long hauler my body is struggling to keep its temperature proper and I get breathless if I'm doing serious walking especially in the heat this along with EDS makes it extremely difficult and it's just best before I tear up my body that I use a manual wheelchair.

By the way I didn't have to tell you this information anybody who's ambulatory doesn't need to tell you what their condition is they don't need to prove themselves to you not all wheelchair users are paralyzed a majority of us just have conditions that lead us to needing wheelchairs to better help us get around! With the pandemic and the effects of long covid you might start seeing more of us a lot more just like myself.

#not ninjago #ambulatory wheelchair user #disability pride month #covid long hauler #elhers danlos syndrome #physically disabled #also if this shows up on the Ninjago tag welcome to the new system #if the word Ninjago is mentioned once even in the post in general #itll pop up when you search

[createyourownnarrative]

I am feeling so many emotions right now. I have to use talk to text because I can’t type right now. I am having tremors and my vision is very blurry. Also I tried to type a message to a fellow long hauler, and I messed up every single word I tried to type.

Anyway, that’s not entirely the reason why I just feel so devastated right now. I was on social media, and a post popped up in my feed from a woman, I know. around my age with cancer. I really feel for her. She seems to have a great deal of love and support and but going through treatment.I can only imagine what she’s going through. I see posts of her creating things. playing music, performing live music, leaving the house, going out, and just being able to make her appointments. Just having appointments to go to… treatment options and support. Despite her condition and health struggles she is still creating and living her life. although I know social media is not quite what it seems.

I broke down into tears. I felt like a failure. I asked my boyfriend what am I doing wrong? I can’t even type or get out of bed at times, my absences at work are growing as I feel my condition worsening, and here is this woman with fucking cancer. look at all she is able to do with cancer. and I just sit on the couch or lay in bed, unable to move and severely depressed because all I want to do is create and live my life. and at times I feel disabled. And you can’t even tell.

I feel self loathing this morning thinking, “ well it’s not like you have cancer or something else”. Maybe I’m gaslighting myself today. I just feel so dead inside. I feel invisible.

#chronic pain #chronically ill #covid #covid isn't over #covid19 #create #long covid #art therapy #chronic illness #long haul #cancer #covid long hauler #long haulers #im losing my mind #send help #help #long hauler #chronic #chronic fatigue

[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.

#disabled #spoonie #cripple punk #chronic illness warrior #long covid awareness day #long covid #covid long hauler

[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.

#personal post #long covid #covid long hauler #covid 19 #post covid

[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.” " ---

#long covid #covid long hauler #cfs #post viral illness #post covid