For many people with CF, coronavirus (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 or stress and some may find it harder to manage pre-existing mental health conditions. 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.
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.
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.
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 – While this might be difficult to do if you and your family need to stay inside, 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 while shielding. 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
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.
We recognise that a lot of people with CF have experienced times similar to this where they have felt isolated. Please share your experiences and tips for dealing with isolation on social media using #cfandcoronavirus.
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.
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:
You can also take a look at this full list of mental health helplines and charities.
Staying active while 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 or relax.
- 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 while you’re 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.
Making sure you continue to eat healthily, especially if you have CF and are pancreatic insufficient, is very important. We know that many people with CF and their families are worried about being able to get food deliveries while they are shielding. Take a look at what we are doing to make this process easier for people with CF, and find out what you can do to get the food you need.
We have worked with cystic fibrosis (CF) dietitians to produce some information for people with CF and their families on cooking and shopping while shielding. 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.