Sandy (first name only used by request) first tested positive for the COVID-19 virus in December 2020, and once again in April 2022. After many of the initial COVID-19 symptoms she experienced did not subside, she realized that she was experiencing "long COVID."
Beginning in spring 2021, loss and alteration of taste and smell, weight loss, brain fog, coughing, fatigue, and a rash on her head were a few symptoms she was still struggling with.
“When I first had COVID, I had short-term memory problems and problem-solving difficulties. These had not totally resolved when I got COVID the second time. I noticed it worsened.”
“My breathing isn't as good, and it's affected some of my recreational activities like singing. I used to play the French horn,” she continued. “My symptoms are still lingering.”
Aspects of daily life that she previously took for granted also changed. “Our coffee grinder caught fire when Mark [my partner] was grinding coffee. The grinder malfunctioned and it started smoking…And he said, ‘You don't smell the smoke?’ And I said, ‘I don’t.’”
Sandy sought medical care. “There were no long-COVID resources when I first had [COVID-19],” she recalled. “[My family doctor] followed me every month and then every couple of months for over a year, just to check that everything was okay. I don't know if she ever told me I have long COVID, but…I was still coughing, couldn’t smell right, and constantly felt fatigued.”
“I saw there was a call for patient partners to help [the Network],” she said. “The network wanted to create resources so that they could handle the volume of people that were coming to them. I participated in a focus group to help with the creation of these tools. This was the first time I heard of the network.”
Sandy’s discovery of the online PC-ICCN resources
, combined with support from her family doctor, helped her become more informed and provide self-care for her symptoms and strategies to regain her health.
“A big part of this is just knowing that long COVID is not just in your head and that you're not crazy. That it's a real thing, and that there's support…I think having more information really helps. A person doesn't need to worry when they know that what they're feeling can be expected.”
“I used to be a physiotherapist, so one would think I'd be able to manage my symptoms. But the brain fog kept me from actually finding the information in my head and putting it into action. For example, I know about pacing, as I normally have chronic fatigue. And yet, it was so helpful to read the online PC-ICCN resources because it helps refresh that information, and then helped me put it into action.”
“When you're not as well, cognitively, it's good to have that review,” she continued. “And I've actually gone back to that website a few times to review things and just make sure I haven't missed putting something into action.”
For people experiencing post-COVID symptoms, Sandy’s main advice is to be patient and to take time to learn about what you can do for your own recovery.
“I used the [PC-ICCN information] sheet on fatigue, and that was helpful. I learned about screen time and the impacts of this. That was a real ‘aha!’ moment for me to learn that screen time could trigger a flare of my symptoms.”
Sandy also realized that her symptoms could be from COVID and long COVID, and that sharing information in support groups helped with validating her experiences.
“I don't seem to get post-COVID flare-ups from my phone, but I get them from my laptop,” she said. “For the taste and smell concerns, I found out from the focus group that I participated in that it was common for people to smell smoke when there wasn't. Being in a focus group helps to hear other people's symptoms, and support them too.”
Finally, she emphasized that there is clinical, online and peer support available, and this is helping in her recovery.
“Seek out support from your medical team when roadblocks occur and when you need help,” she noted. “Know that your recovery will ebb and flow – some days may be better, others worse, as you gradually return to your best self.”
“I find it quite heartening that there's a treatment plan and resources and self management information. It is just so helpful as I go through this,” she continued. “Validation that these weird experiences are real for others reminds me that I’m not alone, and that I will get through this.”
Learn more about post-COVID-19 care and recovery