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We know that managing your well being when living or caring for someone with pulmonary fibrosis can be challenging.

Watch our chair Steve Jones, who is living with IPF and has a lung transplant, talk about managing as he self-shields:

Steve was filmed during the first week of lockdown in March.

Staying away from excessive social media use

Whilst some social media use can help you stay in touch with family and friends. Too much time looking at online news and social media can make you feel more anxious.

As the Mental Health Foundation say “Rumour and speculation can fuel anxiety.” Having access to good quality information about the virus can help you feel more in control.

You can get up-to-date information and advice on the virus here:

Try to focus on the things you can control, such as your behaviour, who you speak to and who you get information from. Every Mind Matters provides simple tips and advice to start taking better care of your mental health.

Managing anxiety

Don’t be afraid to talk about how you are feeling. Being honest with family and friends about how you feel helps you to work through the difficult times together. You can find practical advice, interactive tools, videos and audio guides to help with your mental health at the NHS Moodzone. Have a look at our advice in full on how to manage anxiety.

Practising mindfulness can be useful for managing stress and anxiety

Keeping a routine

Mind UK recommends writing yourself a daily schedule including:

  • Plan how you’ll spend your time. It might help to write this down on paper and put it on the wall.
  • Try to follow your ordinary routine as much as possible. Get up at the same time as normal, follow your usual morning routines, and go to bed at your usual time. Set alarms to remind you of your new schedule if that helps.
  • If you aren’t happy with your usual routine, this might be a chance to do things differently. For example, you could go to bed earlier, spend more time cooking or do other things you don’t usually have time for

Setting yourself goals

Setting yourself daily and weekly goals are a great way to maintain a sense of wellbeing and purpose. What have you always wanted to achieve that you haven’t found the time for?

Ideas from Action for Happiness on goal setting include –

  • Being a source of interest, engagement or pleasure
  • Giving us a sense of meaning and purpose
  • Bringing a sense of accomplishment when we achieve what we set out to (or milestones along the way) – this also builds our confidence and belief in what we can do in the future.
  • Goals help focus our attention. Actively working towards them appears to be as important for our well-being as achieving the end results we are aiming for.
  • Goals are most successful when they’re something we really want to achieve and when we set them for ourselves – rather than being something someone else wants us to do.

Exercise

It’s important to keep moving, doing as much as little as feels right for you. Watch our video from Chest physiotherapist, Kim Verry who talks about how to manage and the importance of exercise and movement during the coronavirus.

Have a look at the British Lung Foundation for exercise videos you can do at home:

“Our Stay active, stay well exercise videos give you everything you need to start exercising. They include step-by-step aerobic and strength exercises as well as how to warm up before you start, and cool down and stretch at the end. The programme has been designed for people living with a long-term lung condition, and includes exercises at 3 levels:”

Staying in touch

It is really important to stay in touch with family and friends, have a look ‘support and keeping connected’.

Asking for help

If you are in need of help – ask.

We recommend keeping in touch with your support group if you attend one by way of email, or ringing our call back support line.

You can contact the APF Support Line if you would like to discuss anything in this article further. Telephone 01223 785725 any time and someone will call you back within two working days, or email  supportline@actionpulmonaryfibrosis.org

We are here for you.

Diet

It’s important to keep well and healthy as possible and your diet plays a key role in this.

Watch our video on managing your nutrition during the coronavirus with dietitian Marie Claire:

Marie Claire’s suggested organisations to look into:

Make sure you are eating plenty of fresh fruit and vegetables and drinking water.

The NHS has a great advice on managing your diet, including what food groups to eat.

Sleep

NHS advice getting between 6 and 9 hours of sleep every night.

Our top tips on getting a good night’s sleep with pulmonary fibrosis.

  • Keep to a regular sleep schedule. A daytime nap is fine but avoid long naps as this can affect your sleep at night
  • Avoid caffeine and alcohol at least six hours before bed. A light evening meal is also recommended
  • A hot bath 90 minutes before bed, or soaking your feet in hot water, can help you fall asleep
  • A quiet, clean and tidy bedroom encourages relaxation. Keep noise out and the temperature to around 20 degrees
  • Reduce ‘blue screen’ time two hours before bed – TV, tablets, phones and computer Screens reduce melatonin, the sleep hormone
  • Take some gentle exercise, preferably around mid-morning. Exercise too late at night disrupts sleep
  • Try to get plenty of exposure to daylight. It’s important for the circadian rhythm, improving daytime wakefulness and night-time sleep
  • Use a pillow or wedge to help keep you on your side as this opens up the airways. Make sure your head is in an upright position and not lying flat.

Read our full article on sleep in our support group newsletter.

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