‘It’s life-changing’: Woman shares battle with severe COVID-19 symptoms for more than 130 days

Joleen Nelson says seizures, hallucinations, brain fog, electrical shocks among symptoms

A Michigan woman who was healthy before contracting the coronavirus (COVID-19) said she’s been battling symptoms -- including seizures and hallucinations -- for more than 130 days.

While many people point to the overall survival rates of COVID-19 in younger people, Joleen Nelson said those numbers don’t tell the full story of what it’s like to battle the virus.

Nelson has been fighting that battle for about four months.

“You don’t know how it’s going to affect you or someone else,” Nelson said. “You just don’t know.”

Nelson, 41, said she started feeling sick March 27 and thought she was getting a cold.

“I was healthy,” Nelson said. “I was completely fine.”

The week prior, she had lost her sense of smell and taste, but back then, those weren’t recognized as official COVID-19 symptoms.

Nelson is a physical therapist. She said she was healthy and active.

“I honestly would’ve thought I would just get sick for two weeks and then get over it,” Nelson said. “But that’s not the case. It’s going on four months now.”

Nelson said she has meticulously documented her symptoms for months. The total number of symptoms is more than 50, she said.

“It’s been pretty severe,” Nelson said. “There’s been two times my boyfriend had to call 911. The most frightening have been I’m now having seizures from COVID-19. Also, hallucinating. I have brain fog. I have electrical shock running through my body. It feels like an electrical centipede. Shortness of breath, tachycardia, high heart rate.”

Nelson captured video of one of her seizures while in bed. She recently underwent a 48-hour electroencephalogram to monitor her seizures.

“I can’t work,” Nelson said. “I can’t drive. My license is being taken away now -- my driver’s license. I can’t go on my jet ski. I can’t go for a bike ride.”

She can’t even go for a walk unless someone goes with her.

Nelson has become vocal on social media, sharing her story to warn others. She said it’s difficult to read posts that claim the virus is a hoax, like the flu or doesn’t affect young people.

“It makes me angry and it makes me upset because you don’t know if you’re going to be one of the unlucky ones who’s going to have long-lasting symptoms,” Nelson said. “I’ve been taking to thousands of people. They have had this for three, four months. There are a lot of long haulers out there. That’s what we call ourselves: long haulers. You just don’t know if you’re going to be unlucky.”

Her advice to others is to follow COVID-19 safety guidelines.

“I would tell them definitely wear a mask, social distance, just be safe,” Nelson said. “Don’t go to large parties. Don’t go out to the bars. People will get upset about saying that, but that’s how it’s spreading. Just be careful. It’s life-changing. It’s completely changed my life. I try to find a silver lining in it. I don’t see it yet.”

The Centers For Disease Control and Prevention recently found one in five previously healthy young adults were not back to their usual state of health two to three weeks after testing positive.

Many of the “long haulers” have formed online groups to learn more about what others are experiencing.

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