Coping Strategies and Self Care
The stories shared with us by our participants showed how living with long COVID can be a daily struggle. Physical symptoms such as weakness, extreme fatigue, pain, digestive problems, and breathlessness had an impact on people’s ability to function normally at work and in their daily lives. For many of the people we spoke with, going for a walk or taking a shower required planning and extraordinary effort. Memory problems and an inability to concentrate made it difficult for them to read, retain information, or perform simple tasks such as making a grocery list. Some of our participants developed anxiety and depression, in part due to persistent symptoms, and because they had no idea if, or when, they might get better. This was made worse when other people questioned their symptoms and suggested they were due to other causes. Some of our participants said they were grieving for their previous selves and their old lives. The people we spoke with told us about the strategies they use to cope with these daily challenges and the things they do to take care of themselves as best they can.
Jason describes the symptoms he lives with and how hard it is to function day to day.
Written testimony
Yeah, so the symptoms that I’ve described tend to be quite connected to one another and as one symptom flares up it tends to cause the other issues to be exacerbated. So for instance, the worse my gastrointestinal issues get, the worse my maintenance insomnia gets and, of course, by extension like the sleep disruptions worsen; fatigue, depression and anxiety during the day. So there have been periods where those sets of symptoms together have been almost debilitating in so far that I am not able to complete the work that I need to do, and other times it being more manageable … It’s been really hard. Like, for the most part I just force myself to work through them … I’m kind of stuck in this languishing state a lot of the time where it’s not so bad that I needed to, say, go on disability, but at the same time I’m definitely not thriving and definitely not kind of – definitely not doing well and feeling good on a day-to-day basis.
Managing physical symptoms
Some of the people we spoke with found ways to manage some of their physical symptoms. These included pacing, changing their diet, and undertaking activities that make them feel better.
Pacing to manage PEM
People living with long COVID often experience post-exertional malaise (PEM). This means their symptoms can get much worse after physical or mental activity. These symptoms usually get worse 12-48 hours after the activity and can last for days or even longer. Pacing is an approach to rehabilitation that balances activity and rest so that the person doesn’t suffer PEM.
Several of the people we spoke with were using this approach to help manage their symptoms. As Nicole explained, “I have to look at my week and if I work one day, I can’t exercise that same day, I have to take a day in-between … I can only do that one thing. So it’s work or exercise or socializing, I can’t do all of that on the same day.” Nick described pacing as “seeking that balance between rest and your activity time … because you know that you’ll have to pay the price if one day you’re exerting yourself … the next day is just going to be a complete letdown in terms of your productivity.”
Kari now listens to her body.
Transcript
And yeah, I’ve just, I’ve learned to self pace and to really be very vigilant of how I’m feeling, and I can tell if I start to feel crappy or tired, I have to stop and rest. I can’t just, you know, prior COVID, I would just, you know, you’re […]
Victor plans his daily activities carefully to avoid triggering a relapse.
Transcript
So right now I kind of have to plan my days to a very strict schedule, like down to the hour of what I’ll do each day. So I know that I’ll work and working, thankfully in my case it’s done on a computer remotely. So it’s manageable, I don’t […]
Managing other symptoms
Many of the people we spoke with were living with several different symptoms of long COVID. They described a variety of strategies they used to manage them.
Hollie is one of several participants who is experiencing postural orthostatic tachycardia syndrome (POTS). This is a condition where the body’s ability to maintain consistent heart rate and blood pressure is affected. When the person goes from sitting to standing their heart may beat very fast and they may feel dizzy and faint. Hollie explained that “Increasing your water, increasing your salt intake, making sure that you have a really good electrolyte mix has been really helpful. Heat pads, icing the neck, and the gua sha (a traditional Chinese healing method that uses a smooth-edged tool to press-stroke your skin) has really helped.”
Katherine sometimes has trouble breathing. She told us, “I still get the shortness of breath, but not to the same degree that I once did now that I’ve sort of slowly, slowly built up a tolerance. And I have some tools in my toolkit now, such as deep breathing exercises … I started doing yoga, first time in my life. I saw it recommended because of the breathing, and there’s been a marked improvement in my shortness of breath over the past – I guess it’s going on year now for me, so that’s exciting.”
Cher is so exhausted by any exertion that she has cut out pretty much everything in her life. She explained, “I’ve stopped working completely … I can’t really watch TV, I can’t listen to audiobooks, I can’t have my windows open, and I can’t have light coming into my room. I have to minimise contact with my family. So I spend my whole day in my bed, in the dark, trying to get quiet. I usually wear noise-cancelling headphones, or have a pillow over my head or something. And just trying to let my body figure out energy.”
Lesley hasn't been able to eat normally since COVID. She describes how she manages her food.
Transcript
I don’t eat a thing until the afternoon. So we’re at 11:36 right now, so the only thing I’ve had right now is lemon water. So I just have some lemon water until I really can’t have – until I can’t hold off any longer. And then I usually start […]
Two of our participants discovered that exposing themselves to cold seemed to help with their symptoms.
Violaine finds that exposure to extreme cold helps with her lungs and voice.
Transcript
J’ai découvert avec mon conjoint, on a une cabane au fond du bois, donc on a découvert que l’exposition au froid, au très, très grand froid, être à moins 20 pendant de nombreuses heures, m’aidait énormément! Donc pendant tout l’hiver, ce premier hiver-là, mais on l’a fait le second hiver […]
Louise finds that cold water swimming eases her pain.
Transcript
Every day I would just go out and float in the lake. I couldn’t really swim very much. I have a bummed shoulder as well which isn’t helping, but I would just go out and float and suddenly nothing would hurt and I’d be like, “That’s kind of weird, nothing […]
Managing daily life
The many symptoms of long COVID made it difficult for the people we spoke with to do everyday things like taking a shower, going grocery shopping, reading, walking short distances, or coping with light or noise. Our participants told us about the range of challenges they faced in their daily lives and the strategies they developed in order to be able to function.
Christine told us, “I changed my lightbulbs out because it was too bright – things were too bright.” Violaine explained that, in order to cope with a very short trip to the pharmacy she needed to protect herself from noise and light. « Il faut que j’aie ma canne, mes cache-oreilles, des lunettes fumées. Il faut que j’aie tout un kit pour… Parce que sinon, j’ai l’impression que je vais perdre connaissance. Je deviens hyper étourdie. » [I have to have my cane, my ear plugs and dark glasses. I need all this stuff … because, if not, I feel like I’m going to pass out. I get really dizzy.] Translation from original French. Manali works in a high-pressure research environment. She said, “I now give myself two hours more to do something … if I knew that I’m going to take four hours for preparing this presentation, I give myself two hours more … [and] I don’t beat myself up if I can’t manage a deadline … I have learned to take away the superwoman t-shirt.” Jennifer 1 finds she can’t read like she used to because “I get three chapters in and I can’t remember what I read.” Re-reading books she’s already read or listening to audio books now works better for her. Ruth can’t be on her feet for too long. Her strategy is to “have pillows all over the place. I have stools all over the place in my house. In my shower, I have chairs outside, just because I know I’m going to have to sit down somewhere. Before I did all that I literally was just sitting on the floor or … on the ground wherever I was.”
Lyse builds rest into every stage of her day.
Transcript
C’est vraiment le repos. Exemple, je prends ma douche là puis après ça, je prends ma douche, je m’assois. Je peux rester une heure. Après ça, je vais dire : « Bon bien là, je vais aller me faire… », je ne sais pas moi, je vais me prendre un thé ou me […]
Luna says she has changed the way she lives entirely.
Transcript
What I’ve done is I’ve changed the way I live entirely so that, now, normal is this thing where I can’t wake up quickly. Where I plan – I budget the amount of effort I give – I put into everyday, physical effort and even mental effort. And within those […]
Assistive devices and disability supports
Several of our participants had started using assistive devices such as wheelchairs and mobility scooters, or had applied for disability support. While some felt uneasy about taking this step, they also found that these things gave them back some of their independence. As Carrie 1 explained, having a disabled parking badge means “I don’t have to be terrified of not finding parking and having to walk all the way across the parking lot. I can park in the disabled spot, and I can use my wheelchair. And I know that I’m not going to have too much PEM from going out of the house versus shopping before.”
Ruth was reluctant to get a mobility scooter but now thinks it's great.
Transcript
I just actually got a mobility device. I had it prescribed for a year and it took a long time for me to accept that. I know I needed it but it was just hard to accept that like where my health, I think, was. So I finally got it, […]
For Valérie, having a wheelchair means she can get herself a glass of water without experiencing tachycardia.
Written testimony
Parce que dans le fond, en janvier… non pas en janvier, au mois de novembre 2020, fin novembre 2020, mon mari a dit : « Là c’est assez, là ça n’a pas de bon sens, tu ne peux plus rien faire! », puis là mon moral n’était pas très bon, parce que moi, j’étais une grosse sorteuse, puis là j’étais pris entre mes quatre murs. Fait que mon mari est allé louer une chaise roulante chez Jean Coutu. Fait qu’à partir de ce moment-là, bien là j’ai pris… Là ça m’a redonné vraiment là… Enfin, j’étais capable d’aller me faire couler un verre d’eau sans être en tachycardie. Ça n’avait juste pas de bon sens! Puis je toussais tellement aussi! Ça n’avait pas de sens. Fait que là, j’ai quand même depuis ce temps-là, on a fait toutes les démarches avec le CLSC tout ça puis j’ai reçu dernièrement ma chaise roulante adaptée, parce qu’on a eu beau essayer la réadaptation, tout ça, ça ne fonctionne juste pas, fait qu’on est vraiment plus en mode adaptation. De trouver des stratégies, des outils pour que je sois le plus fonctionnelle possible. Puis dans le fond, c’est ça, on a fini avec cette étape-là vraiment le mois passé. Mais l’ergo du CLSC a aussi fait des démarches avec le programme d’adaptation à domicile, puis on a réussi à faire installer une chaise élévatrice pour les marches dans la maison aussi. Parce que là, je n’arrivais pas, ça n’avait pas de bon sens.
[English translation not yet available.]
Jennifer 2 says "You have to accept how vulnerable you are."
Transcript
So we decided to move and we’re now renting. We’re now renting actually a very small house but it’s on one floor, all on one floor and we picked it because everything was just – it had everything that we would need to make my life manageable. You know, not […]
Managing the psychological and emotional impacts of long COVID
The symptoms of long COVID have had a profound impact on the lives of the people we spoke with. Because there is no way of knowing if, and when, they may improve, many have become depressed and anxious. Here are some of the ways that they try and manage the psychological and emotional impacts of long COVID.
Distraction
Several of our participants found it helpful to distract themselves to avoid being overwhelmed by negative thoughts. William feels “The most helpful coping-wise would be keeping your mind off it … At work, I’m talking to coworkers, that’s keeping my mind off – and if I come home I’ll chat with friends online, that will keep my mind off things. And the light activities, like going shopping will also help, or doing that physio once a week will also help too.” Jennifer 2 told us “I used to think that distraction was bad because it’s like avoidance, but I think in order to live with something like this at times you need some avoidance. It is not possible to face it bravely every day, some days you just have to say, “Oh, it’s the weather” [laughs] … Sometimes I’ll just go out to the garden and pull a couple of weeds [laughs]. Sometimes I’ll play music. I’ll watch videos of cute animals.”
Paulina finds that small things can provide a useful distraction when her mind starts to spiral.
Transcript
Sometimes I do realize that I am starting to spiral and sometimes it doesn’t – it’s not like an environmental thing, it just happens. You just – it’s a bad day. Going outside, getting fresh air, really, having your favourite cup of tea. Just small, small, small things that kind […]
Victor keeps his mind occupied to avoid going down the rabbit hole.
Transcript
You still have to keep your mind busy though, so I’m reading a lot of books. I’m watching a lot of stuff online, Netflix and all that, just try and keep your mind occupied. Because when it gets the worst, is when you’re just not really doing anything, you’re thinking […]
Stop fighting your body
A common theme we heard from our participants was that they were learning to stop fighting their body and adjust their expectations. As Ruth put it, “I have to make the shift of learning to live like this and stop fighting it because I was just constantly fighting my symptoms … you’re just fighting yourself. You’re fighting your body. Right? So I just had to come to acceptance.”
Maggie is learning to give herself some grace.
Transcript
So, you know, now the adaptations are around trying to schedule things in a way that doesn’t exhaust me. Trying to give my – I’ll call it giving myself some grace. It’s really hard when you’re used to being independent and you’re used to being the functioning level in your […]
aerik appreciates the beauty of slowing down.
Transcript
There was a way that like I had already had those experiences and was able to appreciate the beauty of slowing down and the beauty of – it’s like there are parts of myself I get to access in those spaces. There is like kind of deeply spiritual connected parts […]
Feeling grateful for small things
Noticing, and feeling grateful for, small positive things was a theme we heard from several of our participants. Christine has a “happy journal” that she started using to record positive observations when she felt she was becoming too “pessimistic.” Melissa was able to find many things to be grateful for: “I went for a walk. I’m blessed with food. My son is here … I talked to my brother … I’ve got these new lipsticks” … spring is coming.”
Valérie is grateful for every sign of improvement.
Written testimony
Mes capacités fonctionnelles ne sont vraiment, vraiment pas élevées, mais c’est sûr que chaque petit gain que je fais, chaque petite chose que je suis capable de faire de plus que je n’étais pas capable de faire avant. Bien c’est comme wow! On dirait que si je revis à chaque fois, je suis comme « Ah! Enfin, je suis capable de parler un petit peu plus longtemps au téléphone avec des gens, que j’aime. » « Ah! Tiens! Là je suis capable de… C’est niaiseux mais je suis capable de vider le lave-vaisselle au moins trois morceaux de plus qu’avant. », des petites choses comme ça. Ou comme en fin de semaine, j’ai été capable de jouer à la Nintendo avec mon fils, pas longtemps, peut-être un 15 minutes, mais un 15 minutes tellement de plaisir, de pouvoir jouer avec lui. T’sais comme avant! Puis tous ces petits moments-là font en sorte que moi je m’accroche à ça, je me dis : « Ok, là je suis capable de faire ça. Ah! C’est le fun! Enfin je peux profiter de sortir un petit peu. ». Je suis partie avec ma famille en fin de semaine, on est allé faire juste le tour du bloc avec mon quadri-porteur, puis ça faisait longtemps que je n’avais pas réussi à sortir, parce que je n’étais pas assez en forme. Là juste de pouvoir sortir. « Ah! Wow! Ok, enfin je suis capable! » …
Mais tous ces petits moments-là font en sorte que vu qu’ils ne se présentent pas très souvent quand ils se présentent, c’est comme un petit cadeau de la vie. Fait que t’sais je les vois vraiment comme, il faut profiter vraiment de chaque instant, puis c’est tellement… Tout devient extrêmement précieux. Fait que je le vois comme ça. Ça, je pense que ça m’aide beaucoup de ne pas me donner des objectifs extrêmement élevés. De ne pas m’attendre à ce que je vais revenir comme avant. Ça, ça fait longtemps que ce deuil-là je l’ai fait. De juste penser à aujourd’hui qu’est-ce que je suis capable de faire. Qu’est-ce que j’aimerais faire. Puis quand je suis capable de faire un petit peu plus ou d’avoir un petit moment de plaisir de plus, bien pour moi, c’est très, très précieux puis je l’apprécie tellement que c’est ça qui vient comme recharger ma batterie émotionnelle, je dirais. Puis le rire, l’humour, bien t’sais si je… Des fois, je suis vraiment dans un gros brouillard mental, puis je m’enfarge dans mes mots, j’en invente, je fais des fusions de mots, toutes sortes d’affaires bizarres! Mais au lieu de faire comme « Ah! non! Pas encore! ». Bien j’en ris, tu sais, puis avec ma famille aussi on en rit. Fait que c’est sûr que ça, ça m’aide beaucoup.
[English translation not yet available.]
Structured approaches to mental health
Some of the people we spoke with had worked with health professionals who helped them develop their capacity to cope with the psychological and emotional impacts of long COVID. Lori talked about what it feels like to have a relapse. “It affects you because every time you get sick it pushes you down, it makes you feel like, ‘You’ve got to be kidding, again [laughs]?’… The negative feelings … always come back.” Her healthcare provider encouraged her to “feel what you feel and then move on from that.”
Jennifer 1 is learning to focus on the present and not play the 'what if' game.
Transcript
So playing the ‘what if’ game never works. I do say even though I’ve like done my best to train myself, even pre-COVID to not fall into that trap it does seem to be right now happen more often. But having my psychologist to talk to helps break that cycle. […]
Chris is using Cognitive Behavioural Therapy (CBT) to get back to some activities in his life.
Transcript
So one thing, at the outset, they talked about, which comes from cognitive behavioural therapy, is avoidance and thinking about, why we avoid things, what drives us to avoidance and what we get out of that, versus what it costs us … Are we avoiding it because we’re catastrophizing about […]
Regaining a sense of wellness
Many of the people we spoke with stressed how much they just wanted to feel well again and to have some sense of control over their health. They told us about the things they did to try and regain a sense of wellness. This included activities such as engaging with pets, practicing yoga and meditation, finding a creative outlet, or drawing strength from religion and spirituality.
Pets
Jennifer 1 told us that her cats have helped her cope with her situation. She explained, “Looking after them … cuddling with them, playing with them. I really, and truly think that if I didn’t have them I probably wouldn’t be in the more mentally healthy state that I am now. Because at least I’m not alone. Even though they don’t talk back I still talk to them. So yes, my cats are definitely a coping mechanism.” Christine tries to “ramp up my time with my animals and that’s helped … I’m a very energetic person and I just go, go, go, go, go, go … I really struggled with slowing down and that helped me.”
Yoga and meditation and other creative practices
Several of our participants turned to yoga, meditation, or other practices to help manage their symptoms and their mood. Lesley says she “religiously carves out” an hour every day for yoga because it “calms her nervous system down.” Luna “was always trying to do what I could to stay reasonably physically healthy even if I couldn’t do cardio. So I was stretching and doing Pilates, like three minutes of it, whatever I could do that kept me from feeling like I couldn’t physically be in the world.” Kristen “tried a lot of meditating to go to sleep at night and to relax from all the anxiety.” Angela finds that “massage helps a lot [and] a lot of stretching.” Aislene shared that she has “really been putting myself into art, different forms of art whether it’s felting or painting. It turns out I’m actually pretty good at painting.”
Violaine finds that mediation allows her to switch off her brain.
Transcript
Bien la seule chose que j’ai essayée sur ce plan-là c’est un ami qui m’a inscrite, il ne m’a pas donné le choix mais je la remercie. Des ateliers de méditation, donc ça se fait en ligne. Puis je n’ai rien à regarder sur l’écran, c’est une voix qui parle. […]
Religion and spirituality
A couple of the people we spoke with described themselves as having religious faith or spiritual beliefs. They drew strength from these beliefs in coping with their illness. Elaine says, “I have a very strong spiritual practice that’s really gotten much stronger through this experience. You know, a lot of prayer, a lot of meditation. I don’t belong to any religion but spirituality has been absolutely critical in this.”
Coucoute has faith that God will help her through this difficult time.
Written testimony
Chaque fois que je fais un petit effort avec la COVID, c’est comme je me sens plus faible. Je n’ai jamais guérie vraiment, je me sens toujours mal dans mon corps. Comme si j’ai la COVID, j’ai mal dans le dos, j’ai mal partout, je me sens fatiguée, je me sens brûlée. Je ne sais pas combien de temps ça va durer mais je ne me sens plus comme avant … j’espère que c’est Dieu qui va me guérir. C’est une croyance en le bon Dieu, parce que Dieu fait tout … quand tu pries Dieu, tu as de la foi, ça te donne le courage aussi à te battre dans la vie, ok. Tu ne te décourages pas, tu sais que lui il va faire quelque chose pour toi. La croyance ça aide beaucoup.
[Every time I make a little effort with the COVID, it’s like I feel weaker. I’ve never really healed, I still feel bad in my body. Like if I have COVID, my back hurts, everything hurts, I feel tired, I feel burnt out. I don’t know how long it will last, but I don’t feel like I used to… I hope God will heal me. It’s a belief in the good Lord, because God does everything … When you pray to God, you have faith, it gives you courage to fight in life, too, okay. You don’t get discouraged, you know he’s going to do something for you. Belief helps a lot.] Translation from original French.