Managing long Covid day to day

Here we focus on the impact of having Long Covid symptoms on daily life and the strategies people used to try to ‘get by’ whilst they were feeling so unwell.

This page covers:

  • The impact of Long Covid symptoms on daily life
  • The importance of rest
  • Pacing and managing limited energy
  • Building up physical activity gradually
  • Breathing exercises, meditation, and mindfulness

The impact of Long Covid symptoms on daily life

Everyone we spoke to had had to make changes to their lives to cope with their Long Covid symptoms. Tom said that his life has been “turned upside down.” Anthony described many activities that he had had to stop: “I’m doing very, very little compared with what I did before [and] that’s quite distressing.” Sarah said the “most difficult” part of her Long Covid was feeling like “a shadow of what I was before.” Susan described her life with Long Covid as “just existing.”

Most people who were working before they got Covid-19 had taken time off work and had no choice but to do fewer tasks at home to help them manage their symptoms. People told us that their Long Covid symptoms had made even the most ‘everyday’ tasks, like reading, watching TV, and running errands, more difficult or impossible. Doing these tasks when they were struggling with exhaustion and other symptoms was very hard.

Jennifer said she did not realise how much energy it takes to do everyday things like reading a book, driving a car or doing a jigsaw.

Having Long Covid had been life changing for Lyn. She is only able to wash and dress herself with the help of a good support worker.

Ben now has to carefully plan every aspect of everyday tasks, like going to the supermarket, to make sure he can manage them.

People told us that it could take a long time to work out what might trigger their symptoms or make them worse. Faatimah said it was “really tricky” to work out what was triggering her symptoms. After several months of trying to push herself, Adele realised this was a “huge mistake.” If she did too much – either mentally or physically – her symptoms flared up. Susan had worked out that her post exertional malaise (when symptoms get worse after physical or mental effort) “hits me two days later.” Shaista said she learned that “for any one thing that I did, I’d have to spend double, triple the amount of time sleeping, so if I was going to the supermarket and I was there for forty minutes, I’d then have to spend three lots of forty minutes just sleeping it off.”

Working out what triggered her symptoms was difficult for Faatimah because what she could do varied from day to day.

Judy found it annoying to have to spend so much time thinking about what might have made her symptoms worse. She thought it could be “random, like the virus does what the virus wants to do.”

Keeping notes of their symptoms and how they changed over time helped some people to work out what made things worse. Ben kept notes in a journal and used a pain app on his phone to track how he was feeling that day and his progress over time. Judy also used a symptom tracking app on her phone, but she had mixed feelings about whether it helped her to track her progress. She particularly hated having to give a number score to rate how bad a symptom, like pain, was one day compared with the day before. Sarah found it helpful to keep a symptom diary. This had helped her to work out why some activities were more exhausting than others.

Sarah had come up with a way of rating the amount and type of ‘load’ which different activities involved. This helped her to plan how much rest she would need after each activity.

Callum said “the thing that has helped me the most is just learning what my new rules are in my body. And rather than trying to push through them or inadvertently just trying to act as normal, [I need to] completely pull things back…it’s almost like you’re building up a map of yourself and once you have the map, it becomes easier to traverse.”

The importance of rest

Almost everyone we spoke to said they had learned how important it was for them to rest. If they did not, or could not, allow themselves to rest, their symptoms got worse. Zubair, Lucy, and Fiona A talked about needing to sleep during the day, even if just for thirty minutes. Lucy said if she didn’t sleep in the afternoon: “I’m just completely wiped out [and] I don’t have the energy for the whole day.”

People were taken aback by their need to rest even after light activities. Anthony said “it sounds crazy” that he needed to rest for an hour in the morning, even if all he had done was get dressed, have breakfast, and tidy the kitchen. Getting more rest was not something that people found easy to do, at least initially, but they had learnt that fighting the need for rest could set back their progress.

Tom has learnt not to fight against his fatigue and brain fog because it sets him back and causes major memory lapses.

Michael pushed himself to “keep going” at first. He thought that taking his mum’s advice to stop pushing himself might have stopped him from getting “more severely unwell.”

Jennifer was advised how to get ‘positive rest’ by a fatigue specialist. She learnt that she needed to keep taking rests after doing anything.

Sarah said that what had counted as resting for her in the past, such as sitting down watching TV while drinking a cup of tea, would no longer restore her energy. Instead, she had to do what she called a “complete sensory shutdown,” also known as “aggressive resting,” to recover after a tiring activity. This involved lying down in a dark room with earplugs in for at least thirty minutes. Vonnie found it helpful to listen to classical music “or something that doesn’t take any effort” at a low volume while resting.

It was not always easy for people to take more rest and it could be especially hard for people caring for children. Kate spoke about planning rests around her son’s activities. She said: “I have to make sure I’ve rested all day if I’m going to take him to something in the afternoon.” Sonal described resting between chores and asking her children to help her: “When I’m doing anything like washing or cooking, I do bit by bit by bit and I’ll tell [my children] to do half of the things.” Helen had started to see her son’s bedtime as “good [because] it will make me have a rest and relax.” Penny had two young children and she spoke of how the need to look after them prevented her from taking the time she needed to rest and recover.

Penny felt that her symptoms took longer to improve because her caring responsibilities meant she was unable to rest and recover when she was initially unwell.

In between the days when she was at work, Lynne had to go to bed and sleep until her children came home from school.

A few people spoke about finding it hard to rest because they had previously led busy lives. Kate said it had been a “huge adjustment” for her to not be busy, to not “have any energy for ‘to-do’ lists.” She realised “I’ve always probably coped with a lot of things just by being busy.” Fiona A and Laurie, who were both in their 60s, talked about getting older and resting more as a result of their Long Covid. Fiona A said that, at her age, she should be relaxing more than she was before she got Covid-19. Laurie said, “I’ve never had unallocated time [until] now and I recognise that I need unallocated time, and whether that’s age, or whether that’s Covid or whether it’s age and Covid…what matters is that I recognise the need for unallocated time [and] I allow myself that compassion.”

Pacing and managing limited energy

As well as learning to get enough rest, people spoke about the importance of pacing themselves. This involved limiting their daily activities and spacing them out to allow for breaks in between. Some people we spoke to had found it helpful to imagine the amounts of energy they had and how they needed to ration their energy use so that it would last them all day.

Golda explained how learning about ‘spoon theory’ had helped her understand more about energy levels and pacing.

Frances thought of her energy in terms of having a limited number of beanbags. Some days showering would use up six beanbags of energy and on other days it would only use up one.

Sarah found it helpful to think of her day as a current bank account which has energy in it instead of money. She said you need to only use what is in your current account, you need to stay out of debt, and “ideally you’ll be putting energy into your savings account for a rainy day, for when you need it.”

People did not always find it easy to pace themselves. Hannah said: “I am quite young, and I do push through quite a lot, but then I suffer the consequences, but I just refuse to lie on my bed every single day.” For others, it took a period of trial and error to get the right balance between doing things and resting. Ben and Christian both described this as “boom and bust” because they tended to do too much when feeling better and then would have a few days of feeling terrible again. Kate, Judy, and Felix talked about trying to plan their days around their energy levels. This wasn’t always possible for Faatimah and others.

Faatimah felt that pacing was easier said than done because “life doesn’t always listen” to the “perfect plan” that you try to create.

To try to pace themselves, people told us about strategies they used to conserve energy. Sara had started cycling to work because it took “less effort” than walking. Xanthe had bought an automatic car because it took less energy to drive than a manual one. Hannah said that she had had to choose studying over socialising with her friends during her last year at university. Sara, Lucy, and Susan had accepted that they needed to reduce “any activities that are not essential” (Sara). Lucy often only did one activity a day and sometimes that was just managing to have a shower – “[showering] will be my activity of the day and that’s it.”

Susan realised that to have a chance of recovering she needed “to stop doing everything other than the absolute essentials.”

Lyn described pacing herself by aiming to do no more than three tasks a day.

Lyn appreciated the support she had had to do things that made her feel more like herself and less of a “prisoner” in her own home.

Jennifer has had some weeks when she has felt ‘almost normal’ because she has been careful with pacing. It has been difficult to keep pacing herself, but it gives her hope that she will get better.

Building up physical activity gradually

Many of the people we spoke to had led very active lives before they got Covid. Most said they felt much less fit than before. Even a very short walk could be completely exhausting. The people who had been fit and active before Covid said that regaining their strength and fitness was important to them. This had started to happen for a few people, such as Golda who was able to walk longer distances without being tired out and Hannah who said she could feel her “strength is coming back.” Others described how they were trying to regain strength and fitness, even by seeing if there was anything that might help by using resources designed for other conditions.

Ben was attending a gym programme tailored for people with Long Covid. After several weeks, he felt his fitness was slowly returning.

After five weeks, Tom was seeing benefits from attending a council-run exercise programme for people with chronic fatigue syndrome.

Claire was taking small steps to becoming more active. She said: “I’m just being very careful, I’m listening to my body [and] I’m really tuned into it now, so if I’m feeling very slightly whatever, I just won’t even do it.” Sophie had worked out her own strategy to build up the amount of walking she could do, but Judy said that more detailed guidance was needed to help people build themselves back up.

Sophie was trying to build up her stamina by walking a bit more each day but was unsure if this was safe for her to do.

Judy found that much of the guidance although well written lacked the practical detail she was looking for.

Because Long Covid was still such a new condition when we interviewed people, many people had had to take a ‘trial and error’ approach. For some people building up exercise could feel helpful, but for others it could be harmful.

Breathing exercises, meditation, and mindfulness

Some people had tried breathing exercises or meditation and found that these had helped them to rest and recover. Paul said he had found breathing exercises and meditating “really helpful [and] useful.” Jennifer had also found mindfulness and meditation techniques useful. She said that meditation gave her a “good reason to go and lie down.” She felt that it calmed her nervous system, gave her body chance to heal, and stopped her “constantly sort of fighting for energy.”

Adele was surprised at how much better she felt after doing regular meditation.

Anthony said: “Meditation is a good thing to do, to just try and relax you. And if you find yourself worrying about the whole business, or not being able to get to sleep, or ‘Why am I feeling like this?’, then a short meditation session is good.” Faatimah said she wasn’t very good at things “like yoga and stuff like that” but that her kind of “mindfulness thing is to go for a walk and contemplate the world [and if you can’t go for a walk] well you just have to contemplate the world from home.”

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