Long COVID Q&A: ‘I’m scared that this is going to be the whole rest of my life’

In April of last year, everything changed for 57-year-old Patt Elzinga. The Ryder Lake resident had always loved quilting, singing in the choir, leading worship services at her church, and playing with her 10 grandchildren. COVID took it away from her.

“Walking for just 500 metres makes me short of breath, fatigue, coughing, headaches, chest pain, brain fog, muscle and joint pains,” she told The Current. “If I go get groceries then that is all I can do for the day or I will crash… I would feel defeated, that there is really not much hope for the future of my health.”

Elzinga contracted the virus in the spring of 2021, just 12 days after receiving her first vaccination. Nine people in her 11-person household caught the virus, and she went from experiencing a mild illness to the worst flu she ever had in her life. Now, she is one of the COVID long haulers: people who continue to experience symptoms for months or years after first contracting the virus.

Although there is no exact information on the number of people who have long COVID, British researchers estimated that more than one in 10 people who contracted COVID have gone on to get long COVID. Although lingering illnesses aren’t uncommon—post-viral illnesses have been reported in scientific literature for more than a century—there is still very little research on what, exactly, causes long COVID and how it can be cured.

For Elzinga, as for the medical community, there are still many unknowns. We spoke with her over a video call to learn more about what life has been like for her since contracting COVID, and what others should know about the virus.

FVC: Did you ever feel like you really recovered?

Elzinga: I feel like I’ve been sick for the last almost 10 months. I’ve had some good days where I could feel energy. I swept my garage, half the garage. But I’m done for the day; [I’ve] used up my energy points. I first started noticing that I wasn’t getting better. And I was coughing a lot still and having chest pains and shortness of breath. At the three-month mark is when the doctor can refer you to the long haul COVID clinic. I had seen a specialist and she referred me there at two months.

FVC: Has that clinic been helpful to you at all?

Elzinga: Well, it’s more for them to have research and data of when people are going through. They have had OT [occupational therapy] via zoom meetings and social worker via Zoom meetings as a group. But that’s all over, so they don’t follow up more on that I guess. And I was supposed to have physio, but I haven’t heard anything from that.

They said that they don’t know what to do for us. And that’s pretty frustrating. I’ve been to the ER with chest pains 10 times since June. I ended up in the hospital two weeks ago for eight days because of my shortness of breath and chest pain and crashing.

FVC: You haven’t tested positive since?

Elzinga: Nope. They test me every time. They keep putting me in a COVID section of the ER, which I don’t like. Because I don’t want to catch it again. So that’s very frustrating.

FVC: I guess at this point, it’s probably hard to imagine what the future is going to look like. But have you had any thoughts on what you think the rest of your life might look like?

Elzinga: I’m scared that this is going to be the whole rest of my life. I don’t know what the future is going to bring. I don’t know when a major crash is going to happen. That can happen any time. It could happen this afternoon. It could happen next week. I don’t know when that’s going to happen. The body aches too. You’ve got joints, aching and numb, tingling in the hands and all sorts of different things happening in the body. And you want to know what’s going on.

FVC: It definitely feels like there’s a lot that’s still unknown about what happens after you first get that virus.

Elzinga: Yeah. It’s very frustrating when I see people thinking this is nothing, you know. People who are asymptomatic can get long haul COVID. People who have barely just a sniffle can get long haul COVID.

FVC: What’s something that you’ve learned or that’s surprised you about your experience?

Elzinga: My husband has been very, very supportive and helpful and protective. And that’s a nice surprise. It helps how he understands that this is real. A lot of people have it that people say it’s in their head. And a lot of long haul haulers have doctors who say that ‘It’s in your head,’ just gaslighting them. They don’t have support. But I’ve had a lot of support from my family doctor and even the ER doctors and all around me, they believe that this is real. But they’re frustrated, not knowing how to help…

I can’t go out in the garden and do gardening and I can’t do quilting, which I love to do. I have a hard time doing my crafts. I can’t focus on my needlepoint because it’s too much on my brain. I’ve been doing a lot of puzzles because you can leave it and come back to it and not forget where you were. I have a housekeeper because I can’t do the housework.

FVC: For people who haven’t had COVID, what would you want them to take from your experience?

Elzinga: This is real. It’s not fake. It’s not some conspiracy. This is people’s lives. A lot of people in my long haul COVID support group, they can’t work. I’m fortunate that I don’t have to work, but they’re losing their life savings because there’s no support for them, no long-term help for them. I’d like to see some help for all of us financially. Some people have been in this for almost two years. And some are getting a little bit better and then they overdo it and then they’re back down again.

FVC: Is there anything that you want to add that I haven’t asked you about?

Elzinga: I have a day here that I wrote in a journal, if you want to know what it’s like for a day in the life of somebody who has long haul COVID.

FVC: Absolutely.

Elzinga: This is one of the days:

September 15. I’ve been feeling unwell for over two weeks, nauseous, tired, chest pains, upper back pain from September 13. My chest pain was extremely bad, so bad that I called 911. They suggested chewing four one-milligram aspirin during the day. I was tired and nauseous. A little bit of chest discomfort. But when we sat down to eat, I started to get stronger pains in my chest. my mouth started watering, feeling like I might throw up. It was scary. They sent an ambulance and then they came. My blood pressure was 160 over 80. My pain was high enough that I took five milligrams of morphine at home. So off to the hospital, we went.

After an ECG and blood work and chest X rays, everything looked normal. After three doses of morphine, they sent me home at 2am with no answers. This COVID long haul sucks big time. Not knowing what is going on is hard, frustrating for me and the doctors. I’ve been taking other pain medications a few times a day today, and I feel an achy chest sometimes with sharpness and upper back pain. I just don’t know what to do anymore. If I try to live like nothing is wrong. I’m tired and sick for the next four days.

FVC: Have you been keeping a journal like that throughout this?

Elzinga: Periodically. Sometimes I just jot down one or two words, or I have a friend who checks in on me. So I consider that part of my journal too, when I write back to her. Yeah. I’ve had a lot of good support around me.

FVC: That’s good. It doesn’t fix everything that you’re going through, but it’s great to have people who are around you and can help.

Elzinga: Yeah. I’m a singer, so it’s really hard. I can’t sing right now. I did at church on Sunday, [I] tried to sing. I lost my breath and I had to sit down, I got dizzy. And that makes me sad. I love singing and I can’t do it.

Also frustrating is I can’t do the things with my grandkids that I’d like to do. I can’t go out and go up north to visit my grandkids because it’s too long of a drive, and it’ll just make me sick.

This interview has been lightly edited for clarity and space.