Mental and physical health and coronavirus
For many people with cystic fibrosis (CF), COVID-19 causes a huge amount of concern, with families worrying about their health and the health of their loved ones. Because of this, many people will be experiencing anxiety, stress and some may find it harder to manage pre-existing mental health conditions. We are also aware that many people with CF will be finding it difficult to keep up their vital physical fitness when they are self-isolating. We’ve put together some useful information for supporting your mental and physical health, using information from reliable sources like Mind, the World Health Organisation and CF physiotherapists and dietitians.
Last updated: 16 August 2022
We’ve put together some useful information for supporting your mental health, using information from reliable sources like Mind, the World Health Organisation and CF professionals.
The news – keeping up and keeping away
Thanks to technology and the invention of the 24-hour news cycle, we get every update as it happens on our phones, tablets or laptops. If we don’t, we often hear them from those around us. This can be stressful enough on a normal day, but during a crisis it can be particularly distressing.
While people with CF and their families will want to keep up to date on the steps they should take to stay safe, it’s important not to become ‘oversaturated’ with information if it causes you stress. The World Health Organisation says: “Seek information mainly to take practical steps to prepare your plans and protect yourself and loved ones. Seek information updates at specific times during the day once or twice.” They also recommend ensuring your news comes from a trusted source.
If you need to self-isolate or if you are still shielding in some way it can be difficult to stay connected. Many people with CF are experts in dealing with isolation; most have spent weeks in hospital or staying away from friends and family who are sick. As well as speaking to those you know with CF for tips on how to stay connected and keep your mood up, here are some ideas from us:
- Phone or video call a friend or group of friends
- Share your favourite films or books on a group chat, and get others to do the same
- Hold virtual quizzes or challenges
- Watch TV shows or films at the same time and chat about them afterwards
Keeping things child-friendly
Children can find uncertain situations upsetting, especially when the adults around them seem concerned too. The WHO has some tips for helping children deal with the challenges of COVID-19:
Allow your child to express their feelings – This might mean having conversations with your child or setting aside some time every day where they’re encouraged to ask questions.
Keep up regular contact – For some people with CF, especially those who are in hospital, this might be more challenging. The WHO suggest having twice-daily phone or video calls or using social media to stay in contact.
Maintain familiar routines – Things like sticking to regular meal times, keeping up rules about how much TV is watched and, if your child has CF, sticking to their daily treatment routine could help to maintain a sense of normalcy.
Give honest, age-appropriate information – For a child with CF or a child of a parent with CF, this might mean explaining that we don’t know yet how COVID-19 might affect someone with CF, but that the new rules put in place are there to help make sure that people with CF stay as safe as possible.
Bringing the outside in
There are some things you can do to help you stay connected to the outside world if you are self-isolating or still shielding in some way. You might want to spend some time with your windows open, which will also help to keep your home ventilated. If you have house plants, focus on keeping them alive and healthy. You might also want to arrange a place to work where you can see the outside, or listen to natural sounds using apps like Noisli.
Filling your time
When self-isolating or if you are still shielding to some degree, you may feel bored or restless. As well as doing productive things like clearing out your clothes, tidying your house or organising your medication cupboard, make sure you fill your time with things that make you happy. For some people that might mean painting, drawing or making things. For others, that could mean doing DIY, learning a new skill or language, or practicing an instrument. Whatever it is that makes you feel happy, make sure you put time aside to do it, and try to do so away from the news or your mobile phone so that you can concentrate properly on the activity.
Mental health support for children
Children with cystic fibrosis, or those who have parents or other family members with the condition, might be feeling scared, worried or unsure during this time. Here are some useful resources to help support you if your child is worried about coronavirus.
- Everybody Worries by John Burgerman – A picture book for younger children who are worried about coronavirus
- Coronavirus, a book for children by Elizabeth Jenner, Kate Wilson and Nia Roberts – A book about the coronavirus pandemic for older children
- Coronavirus and mental health, Young Minds – Advice for young people, and a parents’ helpline for concerned parents from the charity Young Minds
A letter from your CF psychologists
Dr Samantha Phillips, co-chair of the CF psychology and social work committee, has written an open letter on behalf of the committee to people with CF about how they can manage their anxiety around COVID-19 during this difficult time. You can read her letter here.
Here are some further resources that might be useful to you if you or someone you know is struggling with their mental health during this time:
- Coronavirus and your wellbeing (Mind) – This article looks at practical advice for taking care of your mental wellbeing if you are staying at home.
- Looking after your mental health during the coronavirus outbreak (Mental Health Foundation) – This article includes tips to help you, your friends and your family to look after your mental health during this time.
- Mental wellbeing while staying at home (Every Mind Matters, NHS) – This article offers ideas of things you can do to help you keep on top of your mental wellbeing while staying at home.
You can also take a look at this full list of mental health helplines and charities.
Coronavirus: Helping your child with anxiety
Dr Samantha Phillips gives her advice on supporting a child that is worried about the pandemic.
Staying active while self-isolating or shielding can be challenging, but for people with CF staying fit and healthy is one of the most important things they can do to stay well. Here are some ways you can stay active at home if you don’t have exercise equipment to hand.
Not all exercise has to be challenging. Things like cleaning and dancing to music can help you get your heart rate up. Making sure you’re standing up and moving around regularly, especially if you’re working at home, is also very important.
Here are some suggested resources from CF physiotherapists to help you stay active:
- Joe Wicks – Great workouts for getting fitter and stronger at home with no extra kit required. These workouts are aimed at adults and children.
- Beam – Exercise and wellness video platform (previously known as Pactster) for people with CF. They have released a two-month free membership for people with cystic fibrosis, an offer that is running until the end of April. The platform offers exercise videos of various intensities, with targeted yoga and yoga for better breathing videos being particularly useful. Provider code: BEAM-STAY-WELL for two months free access
- Sophie Grace Holmes – A personal trainer with CF who is completing home workouts live on Instagram.
- Tai chi - The benefits of tai chi for people with CF have been studied by researchers at the London South Bank University and the Royal Brompton Hospital. The Wu Shi Taiji & Qigong Association UK were part of this study and have made their home practice for people with CF available on YouTube.
- The School of Self – This 10-minute video offers a visual breathing guide to help you to relax. Adjust the speed of playback in the video settings if it is too slow or fast initially.
- Calm.com - A website and app for meditation or better sleep. Free trial gives access to basic audio clips which play over visuals. Physiotherapists recommend trying a clip called ‘Mountains’ in the Daily Calm Highlights. “Really nice if you like to have narration or instruction for breathing and relaxation.”
- Headspace – A helpful app for guided mindfulness or meditation. They have released a free selection of content under the heading of ‘Weathering the storm,’ designed to support people through the current climate. It’s best downloaded as an app rather than on a desktop. Simple account creation and no need to do the free trial.
Make sure you keep up with your usual physiotherapy routine as much as possible. Speak to your CF physiotherapist and find out if they have any ideas for how you can keep up your level of fitness during periods of isolation or shielding.
Some CF teams have access to exercise therapist and are running some individual online sessions, but this isn’t nationwide. Whatever you do, please ensure it fits into your care needs.
Diet and nutrition
Making sure you continue to eat healthily, especially if you have CF and are pancreatic insufficient, is very important.
We have worked with cystic fibrosis dietitians to produce some information for people with CF and their families on cooking and shopping while shielding. This guide can be helpful if you have tested positive and need to self-isolate too. It includes tips on useful foods to have on hand, foods that last for a long time, how to make sure you eat enough food, keeping down costs and meal planning.
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