Thread by @loscharlos

“Still he never got ‘terribly sick’.. More than a year later, he’s teaching from an electric wheelchair, so tired most of the time that even the simplest tasks are often overwhelming.”

“Instead of running 15 miles, walking 15 feet winds me.” #LongCovid deseret.com/utah/2023/3/23…

“The following weekend.. his friends planned a 15-mile run. ‘We were amping up for that Grand Canyon run,’ he said. ‘So I ran that 15-miler.’
How he felt afterwards turned out to be an early sign that COVID-19 wasn’t done with him. The run wiped him out for the entire weekend”

“I don’t know why COVID hit Blake so hard,” she wrote. “But, it’s really hard to watch him still struggling so much. The man that can normally conquer mountains can barely get through normal day-to-day tasks while heavily relying on multiple inhalers.” #LongCovid

“‘It was just this awful game. They would do another test,’ Allison said, but everything kept coming back normal, leading to doctors suggesting it might be anxiety or some similar issue.” #LongCovid

“After waiting more than a month for.. #LongCovid clinic.. she burst into tears & had to leave the doctor’s office when she realized they were there to get referrals.. not a.. diagnosis.”

“No one has answers,” she said. “Sometimes I get mad. Not at him, just at the situation.”

Dr. Jeanette Brown.. said she understands.

“I’ve always felt bad for some of the patients that come to us. We’ve always tried to set expectations.. But I think there are people who come to us and think we have all the answers up front. It’s still a work in progress.”

“The acceptance that this is long term has come very slowly. There was always the end of the school year, the end of summer,” he said, recalling that even when he first recognized he had #LongCovid, he thought it would be ‘a fast bout’ lasting no more than a month or two.”

“You go from running to the top of mountains to not being able to do much. You can’t make it from the van to the sidelines of your kid’s soccer games,” Blake said of starting to feel worthless. “There’s no end in sight.” #LongCovid deseret.com/utah/2023/3/23…

“Allison said hearing her husband describe his despair was terrifying. Her reaction was to take a ‘practical approach,’ focusing on how much insurance money there would be and how long it would last.”

“‘The suicidal ideation is real’ for people with #LongCovid said. ‘I want them to know, more so than their physical health, they’ve got to manage their mental health.’ Even though compared to coping with physical problems, that can be so much harder.”

“‘We’ve had many, many of our group members that have had struggles,’ Andersen said. Some, like Blake, had been incredibly active and healthy before becoming deeply discouraged over their inability to reclaim that lifestyle.” #LongCovid

“Cardiovascular exercise is one of the best non-pharmaceutical ways to treat mental health issues, Andersen said, so ‘when a person is physically incapable of doing that, it’s very tricky to replace.’” #LongCovid

“Add in the uncertainty surrounding recovering from #LongCovid, & coping becomes even harder. ‘The darkness of the true unknown is very difficult to physically & emotionally manage,’ adding, ‘It’s devastating. You get a little bit of hope and the rug gets pulled out.’”

“With this, the frustrating thing is I don’t know the duration of how long this will affect them, if it’s something that will continue onward for years. If it will ever resolve,” she said.

“Especially with COVID, we don’t know those answers yet.” #LongCovid

“He’s no longer seeing any health care provider for his #LongCovid, citing frustrations over hearing his extreme fatigue being described as ‘annoying’ rather than life-changing, and prescribed physical therapy that crashed his energy.”

“Every time I go, it’s emotionally draining, like you’re trying to get ready for no answers, but you still get your hopes up,” Blake said. He does continue to monitor what’s happening with other #LongCovid patients in Utah via social media.

Once they’re having “better experiences,” Blake said he’ll be willing to try medical care again. So far, though, he said he’s seeing “tons of people spending lots of time and money and not getting answers.”

“I wake up every morning catching my breath. I go to sleep catching my breath. It no longer scares me,” he said, adding, “I’ve had to come to accept this is what my life is and what it looks like now.” #LongCovid

“Still, Blake is upbeat.. ‘We’re tackling it just like a canyon,’ he joked, even though #LongCovid has made him ‘allergic’ to exercise, something that once brought him so much joy. Now, he’s finding that in his photography as well as in everyday moments”

Embracing what his stillness can reveal is “almost like I’ve aged 30 years, where I no longer have to be at the top of a mountain to experience awe and beauty and joy. I can sit in a wheelchair and watch my kids.” #LongCovid

Thank you @lisarileyroche for this incredible story of life with #LongCovid — One of the better portraits of how it destroys & then transforms our lives that I’ve read to date. deseret.com/utah/2023/3/23…

Great story here

@long_covid @LongCovidSOS @patientled @ahandvanish @mehdirhasan @MarkedByCovid @PutrinoLab @LongCovidKids @drjudymelinek @tmprowell @WesElyMD @microbeminded2 @drclairetaylor @TRyanGregory @MeetJess @j_b_kennedy @dgurdasani1 @mileswgriffis @luckytran @Tinu