Self-Management
There are many things you can do to help manage your symptoms and slow progression of your disease. Prior to developing this website, we asked our ILD patients in Cardiff what further information they would like to know about their condition. The most frequent request was further information on self management. We hope these resources will provide some further tips to help you live well and manage your condition.
Healthy diet
Eating well is beneficial for your overall health, helps maintain a healthy weight and generally makes us feel better. This can be challenging with a long term health condition. Being overweight can put extra pressure on your lungs making it much harder to breathe. In contrast, being underweight can lead to weakening of the muscles, which can also make it harder to breathe and reduce immunity. Some of the medications used in ILD may make you feel sick and cause you to lose your appetite, however, it is important to still try and eat regularly and healthily.
Keeping me well - Cardiff and Vale University Health Board’s dedicated team of dieticians have developed a digital resource to provide nutritional support to patients across the region. Keeping Me Well has information on maintaining a healthy diet, weight management, eating with pre-existing conditions and support on looking after our wider health and wellbeing. Visit the webpage by clicking this link.
For more information about healthy eating, please see the links below -
- NHS eatwell guide
- NHS advice on healthy eating
- Eating well with a lung disease - asthma + lung UK
- Eating well with pulmonary fibrosis - action for pulmonary fibrosis
- NHS- malnutrition
- NHS - obesity
If you have any concerns about maintaining a healthy weight, please discuss with your GP or ILD team as you may benefit from referral to a dietician.
Exercise
Staying active is very important but can be very challenging when you are breathless. Commonly when people feel breathless, they often stop doing the tasks that make them breathless to try and help them feel better. Unfortunately, this can lead to "deconditioning" or weakening of the muscles which in turn can make the breathlessness worse. This is called the "cycle of inactivity". The good news is that this "cycle of inactivity" can be broken! Research has shown that exercise training can help build up the ability to perform tasks and exercise capacity. This can also benefit your general and mental wellbeing.
There are many ways you can exercise safely with lung disease. It is important to build up intensity gradually and make exercise into a regular activity. You can choose to be active in many different ways, depending on what you enjoy and what you can manage. For example;
- Housework
- Walking
- Gardening
- Joining a gym
Asthma + lung UK have some great information about how to build up your activity levels slowly and manage the "cycle of inactivity" with a "positive activity cycle", please click here to see more information on physical activity.
Welsh National exercise programme (NERS)
Patients in Wales living with a chronic health condition, can be referred to the national exercise referral scheme. It provides a 16-week tailored and personalised exercise programme with supervision from a trained professional in your local leisure centre. You can discuss being referred to the NERS with your GP or the ILD team.
Pulmonary rehabilitation (PR)
Patients with a chronic lung condition can be referred by the respiratory specialist team to participate in pulmonary rehabilitation. This is a 6 week multi-disciplinary programme, where you attend 3 times a week and each session is made up of an educational element, exercise and relaxation, based on recognised rehabilitation standards. The Pulmonary Rehabilitation Unit is based in the University hospital of Llandough. The team consists of a Respiratory Consultant, Specialist Interstitial Lung Disease (ILD) Nurse, Co-ordinator, Physiotherapist, Generic Technicians, Dietician and Occupational Therapist.
Evidence shows that accessing PR improves people’s ability to walk further, helps them feel less tired and breathless when carrying out day-to-day activities. Around 90% per cent of patients who complete a PR programme have higher activity and exercise levels, and report an improved quality of life. PR has been shown to support better self-management and reduction in exacerbations, reduction in numbers of acute and emergency admissions.
Please ask a member of the ILD team if you would like further information or if you would like to discuss referral to pulmonary rehabilitation (PR).
Further useful links
- Pulmonary Rehab Unit - Llandough
- Exercise and pulmonary fibrosis - action for pulmonary fibrosis
- Keeping active with a lung condition - asthma + lung UK
- Online Chair Zumba
Stop smoking
Smoking can cause lung disease but it can also worsen ILD. Continuing to smoke will accelerate damage to the lungs which can lead to a more rapid deterioration in your lung condition. Stopping smoking can be one of the most difficult things to do, however, it will provide a huge health benefit not just for your lungs!
Please ask a member of the team if you would like us to refer you to a local smoking cessation counsellor. For more information about local services and support to stop smoking, please click here.
You can also find out more information on the help me quit website. Patients in Wales are titled to free medication to help you quit!
Vaping
Vaping has been used in recent years as a way to stop smoking but has unfortunately it has also gained popularity in non smokers and younger people. There is not enough known about the long term effects of vaping at present however research so far shows that legal e-cigarettes are far less harmful than smoking. The 2019 E-cigarette or Vaping Use-Associated Lung Injury (EVALI) outbreak highlighted the potential harms of vaping, and the consequences of long term use remain unknown.
- Vaping - myths and facts
Vaccinations / Staying away from those who are unwell
Viruses and infections risk making you feel worse and additionally can precipitate an exacerbation or "flare-up" of your underlying lung condition which can cause a decline in your lung function. Making sure you are up to date with your vaccinations and staying away from those who are unwell can help protect you from illness.
Vaccinations for patients with lung disease include the annual flu or influenza vaccine, covid vaccine and pneumonia vaccine.
Breathlessness management
Breathlessness is a common symptom of ILD but can be very frightening. There are a number of techniques you can utilise to help manage breathlessness. Breathing techniques can help to help gain control over your breath. Learning to pace yourself may be helpful and not "over-doing" things can be helpful. Some people find utilising circulating air, for example an open window or a handheld fan can help ease the sensation of breathlessness. Sometimes prescribed medication, such as oramorph, is used to help manage breathlessness.
- Breathing exercises - action for pulmonary fibrosis
- How can I manage my breathlessness? Asthma and Lung UK
Breathlessness videos
- Breathlessness management
- Oramorph for breathlessness
- NHS tips for breathlessness video
- Breathlessness - helpful techniques - oxford health video
Support group
Joining a local support group has many benefits. This includes meeting people who have shared experiences to get the best tips and tricks! At each session we aim to have speakers on topics of relevance such as-
- Breathlessness management
- Exercise
- Diet
- Benefits and finances
There will be ample opportunity to ask questions in a friendly environment with access to relevant information, news and support. For more information on the Cardiff ILD / pulmonary fibrosis support group please click here!
Action for pulmonary fibrosis magazine
This is a free magazine from APF packed with information on how to help you live well and manage your condition. It includes topics such as support, personal stories, fundraising, research and treatments.
APF insider magazine
Workshops and online classes
Asthma and lung UK workshops and online classes
- Breathe easy programme - workshops designed to help provide you with a toolkit for looking after your lungs.
- Feel Good Fridays- are chair based Zumba sessions with Anne Little designed to be fun, improve mobility and general well being.
Music and singing for lung health
- Music your lungs - Asthma and Lung UK "Making music and taking part in singing can be a fun and rewarding activity. Find out how singing and playing musical instruments can help your lungs when you have a lung condition."
- Singing for lung health Cardiff - Singing for lung health sessions will cover a variety of breathing exercises, songs and relaxation techniques.
- Motivational mondays
- Lift your lungs choir
- Harmonica for lung health
Mindfullness
Mindfulness is a type of meditation which involves being present and fully engaged with whatever we're doing at that moment. It involves using different breathing and thinking techniques to make you feel more relaxed and can help with restoring control when you feel anxious or short of breath. There are many ways you can learn about mindfulness, which include books, apps and guided meditation videos.
- Mindfulness and pulmonary fibrosis - action for pulmonary fibrosis
- NHS Mindfulness tips
- Guided relaxation and mindfullness for patients - Royal Brompton & Harefield NHS trust
- Every mind matters - how to meditate for beginners
For more information, please click here.
If you have any other useful hints or tips you would like us to include on our website, please get in touch and let us know.