Self-management and self-care of Long Covid at home

In the absence of available agreed or authorised treatments for Long Covid, many people were self-managing their symptoms. Here we discuss family experiences of managing children and teenagers’ symptoms at home.

This section includes the following topics:

  • Rest, exercise and activity
  • Over-counter medications or remedies
  • Diet, vitamins and supplements
  • Family support and distractions

See further discussion of self-management of Long Covid in Adults.

Rest, exercise and activity

Families we talked to found that too much exercise or vigorous activity caused a ‘crash’ or a relapse in their symptoms.

Abigail learned about the pain scale from her physiotherapist, which helped her to work out if she could manage certain activities.

As Catherine explained, social activity or too much noise could also lead to a crash, so this was not just physical activity that had to be carefully managed. While the progress of the illness and recovery could be very unpredictable, many children were learning to pace themselves and allow ample time for rest, and how to prioritise activities that really mattered to them.

Evie described this as learning to recognise “the boom and the bust”, saying, ”so even if I’m having a really good day and I do feel like I can go and… go for a run or… or do something more, it’s about thinking, ‘is this what is best for me?’ and trying to not have such highs and lows, and just sort of even it out a little bit and having… maintaining a sense of sort of stability and slowly building.”

A paediatrician advised Harry to think about his energy levels in terms of a ‘battery’.

Hina said that her mum would sometimes give her a massage, or she would try light exercises (such as rolling and stretching) to help manage the pain.

Over-counter medicines and remedies

The families we spoke with tried a range of over-counter medications to help manage their children’s symptoms, such as paracetamol or cough mixtures, though they were unsure if they were helping. People mostly needed rest to get through the day, in the absence of available treatment.

Ben explained that he was relying on “mainly just rest; just resting between even small things, and icepacks for my headache, and hot water bottles and stuff for my muscles. Because we tried paracetamol and things like that, but they don’t seem to help, so just, mainly just resting.”

Harry had tried using magnesium salts in the bath to relax and get him ready for the day.

Diet, vitamins and supplements

Families were trying different diets and vitamin supplements to help manage their symptoms. Some children and teenagers we talked to had cut down on sugar, as they felt that it made their symptoms worse. Others ate small portions to reduce nausea, increased their water intake, avoided gluten or dairy products or generally tried to eat a healthier diet with more fruit and vegetables.

James suspected that having sugar made his heart pain worse, but he couldn’t say for sure.

Daisy was trying quite a restrictive diet to try to manage her stomach pain, and she missed being able to eat whatever she wanted.

Others tried using multivitamins, such as Lissie who was using magnesium and vitamin D. Malaeka was taking a multivitamin that was specially formulated for teenagers and had increased the amount of water she drank to help avoid dehydration headaches.

Sonal is an Ayurvedic practitioner and takes supplements to manage her symptoms at home. She thinks she might be doing too much, as she has lots of caring responsibilities.

Family support & distractions

Families have relied on family support to self-manage their symptoms and draw strength from one another. Family ‘teamwork’ was described as an important way of working together to support the family member with Long Covid.

Beth and her family worked together to support her daughter by including the children in decisions and adapting their plans to support her daughter’s needs.

Those with religious or spiritual beliefs sometimes drew on their beliefs, within a wider community, for support and hope that things would improve.

For Sharifa, prayer was important to help her daughters mentally, to distract from their pain and give them a confidence boost.

Others found it useful to distract themselves from their symptoms with hobbies or play. Some families have really appreciated their pets as additional family members who could provide comfort, like Maryam and Zohaib.

Maryam says getting a cat has been good for her children and is helping with their (and her own) mental health.

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