Saturday, December 23, 2023

Long Covid Tag

Mentioning Long Covid symptoms to people can set off a series of other stories from people with similar symptoms. It's out there, but we're wary of talking about it.

This is from Nikki S's thread, a founding member of Long Covid Support in the UK:

"I was at a get-together at a friend’s house. Someone asked how my LongCovid was and others started listening. Someone else then said their husband has it. Then another said their sister-in-law hadn’t been right since having Covid, but they’d only just linked it. Then another said their relative had a stroke after having Covid and has never really recovered. 

Someone else’s daughter never recovered from Covid and when I last saw them six months ago she had had no healthcare, so I gave them some general information. She since developed typical symptoms of PoTS. GP referred her to a Long Covid clinic who spoke to her three weeks ago. She is waiting for a TTT, appointment is in three months’ time. BUT she was given no advice by her GP or LC clinic to try to help her symptoms whilst she waits. So I sat with her Dad, directed him to various resources and talked in general about Long Covid. They were so grateful as their daughter had been given no advice by her GP or LC Clinic. The question is why the hell not?! 

So many people have Long Covid; it often takes one person to speak up before others are comfortable talking about it, and although we currently have no cure there are things that can be done and medications prescribed that can help lessen the impact. Yet so many continue to struggle alone or whilst they wait for appointments. If it wasn’t for charities such as Long Covid Support providing support to thousands, advocating for appropriate care, pushing for research, and much more, how much worse would things be? And there are other Long Covid charities/organisations too, such as Long Covid Kids, working hard whilst ill themselves, not giving up, constantly pushing for what is needed. There are some researchers too who are determined to find answers, despite being looked down on by other researchers because they are focussing on Long Covid rather than a ‘sexier’ field of research. Well I can’t think of a better illness to try to get to the bottom of: one that’s destroying millions of lives, causing mass disability, hammering health services, decimating workforces, demolishing the economy, stealing education and massacring childhoods. 

So THANK YOU, to all who support others whilst on their knees themselves, and to those who push the research despite their peers looking down on them, and to the fantastic Long Covid community who hold each other up and continue to speak out. We are Stronger Together.

[People not connecting the dots is] happening a lot. Met someone who’s breathless when walking, severity fluctuates - on asking, had it since Covid. And another who’s now forgetting words - had Covid three times. Neither thought it could be due to Covid."

And let's remember that this affects children in the prime of their lives. Any time we don't wear masks because we're not too worried about getting sick, we run the risk of transmitting this horrible bitch of a disease to a young person. From Esther

"Every child is at risk and their risk is increasing with reinfections, yet schools are unmitigated for Covid. A thread of stories from children around the world. Make schools a safer place."

She listed these cases in children (more, actually, but it was killing me to click on them all):

Jay, is unable to walk and housebound at the age of 12. Libby, a 10-year-old girl with Long Covid, struggles to walk and can barely speak, six months after catching the virus. 15-year-old Eliana used to play the flute in a marching band, but now has paralysis. Long Covid led to heart problems for 13-year-old Olivia, putting her in a wheelchair. 14-year-old Libby needs a wheelchair and missed her GCSEs. 13-year-old Pixie says "There is no glimpse of hope" after being left with a long list of debilitating health conditions. Jacob, just 11, can't sit for more than an hour of school each day, and his mom had to quit her job to care for him. 11-year-old Jasmine's mom, a doctor, took her to Germany to get treatment that's not available in the UK, which helped her regain about half of her former capabilities. Ben was correctly diagnosed with Long Covid early, but there's "little that medical professionals could do to alleviate his symptoms. Deacon has such extreme fatigue it's near impossible to attend more than a single lesson each week. After a concert, Zamira got sick and is now confined to a dark room due to noise and light sensitivity. Hayden, at 14, experienced 48 symptoms. Ava is 15 and finds it hard not knowing if she's ever be well again. 

And recently 5-year-old twins in New York both died during the night after having runny noses and vomiting. 

And one more from Erin Godwin:

"My daughter Sophie is in hospital this Christmas. Add it to two birthdays, one Easter. We stack up the special days with a horrible resignation. Kept earthside on tubes and pumps without which she’d die of dehydration and starve. In constant awful pain. Vomiting. Dizzy. Can’t walk. Completely fritzed gastrointestinal system. Autonomic nervous system that just won’t work. Facing down two years of hell. She has learned the cruel paradoxical nature of existence early. She is trapped by what she needs the most to function - her body. But she is so much more than her collection of (awful) symptoms. She finds solace in music. She loves vinyl. She asked for a Stevie Nicks record for Christmas. She asked for a Don Henley record. She listens to their music and she cries. She says Stevie Nicks is a grown up Miley Cyrus. She is the coolest person I know. I love her endlessly. Please help solve long Covid. Please don’t let her have to live like this."

Check out all the problems Covid cases in children from this study:

Long Covid ruins people. "Brain fog" isn't just a matter of forgetting where you left your keys!! It's brain damage. Here's 13-year-old Kaylee's story:

In the comments from Em:

"My teacher friend in Dubai has been Covid-free. He and the children all wear masks in class, no infection, continuous teaching, no significant illness, and the pupils are thriving. They recently won a global competition. It doesn't have to be difficult to protect children. I don't understand why parents aren't more angry with the government for saying schools are safe. . . . Surely parents want to protect their own children?"

That's the REALLY frustrating part: We have all the tools we need to prevent these kids from getting sick, but we just don't feel like using them! I get that masks are kind of uncomfortable and might make us feel weird, but I don't understand how that can possibly trump protecting the lives of children. 

Let's protect the kids by wearing an N95 whenever in public places! 

REMINDER: Most Covid transmission is from people who look and feel completely healthy. Exhaling unmasked can send Covid across a room in minutes, where it hangs in the air for hours like cigarette smoke. Vaccines help reduce severity of cases, but can't eliminate transmission and wane in effectiveness within months because Covid mutates so fast (because of all the spread!). It takes seconds to inhale Covid where it gets into cells all over the body, able to hibernate and affect the brain, heart, and other organs. N95s trap Covid using inertial impaction, diffusion, interception, and electrostatic attraction. They really work!! Covid's the #3 killer in Canada, and we don't know how many people it has disabled. Avoid being one of them. There is no treatment, only prevention. Be wise with N95s! 

Here's a primer for easy sharing (from Scott Squires):

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