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COVID long-haulers share their experiences months after initial illness

  • 3 min to read

BENTON HARBOR — When Nancy Stuck tested positive for COVID-19 in January, she had no idea she’d still be battling the virus in May.

“It wasn’t like what I was hearing in the news because I didn’t have the cough and it wasn’t hard to breathe,” she said recently. “But it’s real. The symptoms are real. They may or may not check out on some of the tests I’ve had, but the fatigue is real. The brain fog is real.”

Stuck, a Benton Harbor resident, is a COVID long-hauler and has been diagnosed by her doctor with extreme fatigue and complications due to COVID-19.

About 10 percent of COVID-19 patients become long haulers, according to an article from The Journal of the American Medical Association.

For Stuck, and rest of the country that’s now opening back up, COVID-19 is long from over.

‘I can’t keep doing this’

About halfway through her shift at Bosch on Jan. 12, Stuck, 62, got a pain in her leg along her shin.

“I went into the office that day and said I wanted to transfer to a different department or something. ‘This is too much for me. I think I’m too old or something because I can’t keep doing this.’ That’s how I felt that day,” she said.

When she got home from work, her symptoms started getting worse. She was exhausted, had a fever, chills and more body aches.

“I couldn’t really pinpoint a sickness because I didn’t have a cough,” Stuck said. “It felt almost like a sinus infection or a flu without the stomach issues because of the aches and pains.”

A few days later she tested positive for COVID-19 and has been battling some of the same symptoms since.

“The exhaustion continued. The headaches continue. The smell and taste comes and goes. I still haven’t gone back to work,” Stuck said.

A horror story

Mary, 78, of Niles, who wished not to share her last name, is also a long-hauler.

“It’s a horror story,” she said. “I’ve been in the hospital a lot in my life, as I have a bone disease. Otherwise, I’ve been in great health.”

She isn’t sure when she got the virus, but started having symptoms in the fall.

“I thought it was a sinus infection and was being treated for that,” Mary said. “The day after Christmas I got really sick and went to the hospital. I thought I was in there for a week and a half, but when I woke up and stuff, it was a new month and a new year. I was in there about 28 days.”

She was treated at St. Joseph Regional Medical Center Hospital in Mishawaka, where she said she received amazing care.

Mary said the doctors told her that having really good lungs saved her life.

“They say every person is different. I had pancreatitis, back pain and hallucinations. Awful stuff,” she said. “There’s a lot I don’t remember. What I do, is just bad. Afterwards you have anxiety and it really affects you mentally.”

A lot in common

Stuck and Mary spoke of many of the same long-haul symptoms after their initial illnesses.

Both have had memory loss and are losing their hair.

Stuck suffers from constant exhaustion.

“I only sleep maybe four hours a night, then during the day I fall asleep all the time. Some days are better than others. Then the next day I wake up and I’m gone,” she said.

She can’t get herself outside most days and her vitamin D levels have started falling.

“I live on a circle, so I’ll walk around the circle, then I’m pretty much exhausted and can’t go any further. And my leg will start hurting in that spot it started hurting the first day in January,” she said.

Mary said her nose just stopped running last week and she’s suffering from a lot of anxiety.

“The thing is, you can’t get it out of your head. You’re reliving it all the time. It stays with you,” she said.

Stuck said what’s helped her is finding a Facebook group of long-haulers.

“I’m not feeling alone or crazy anymore. Other people’s hair is falling out too. Other people have the extreme fatigue that comes and goes, and the muscle and joint aches and pains. At least I know I’m not the only one,” she said.

Treating the symptoms

Mary said she’s been in touch with her doctor constantly.

“I usually see my doctor once a year; I saw him three times in six weeks after getting out of the hospital,” she said.

Stuck said she’s had every test you can imagine, including X-rays, ultrasounds and an echocardiogram, of which she’s still awaiting the results of.

She said her doctor said all he could do was believe her symptoms.

“I appreciated that an awful lot, but he hadn’t had any of this stuff. He doesn’t know what to do either than just to try to treat the symptoms and rule out what he can,” Stuck said.

Mary said the people who think COVID-19 is no big deal anger her.

“No one can know the horrors of what it’s really like. It’s different than anything you could ever image,” she said.

They both just want the public to know it’s real.

“I think a lot of people don’t believe because you’re not running a fever, you’re not scarred, but it is real, and there’s a lot of people going through it,” Stuck said. “Like my doctor said, there’s not enough known about it, so we’re all a case study really.”

Stuck said she hopes to get back to work eventually.

“I’ve got some more years in me for sure. I’ve just got to get through this,” she said. “You’re done being sick, but you’re not. And they don’t know what to do yet to fix it.”

Contact: anewman@TheHP.com, 932-0357, Twitter: @HPANewman