Research Education Support
Perhaps you could do a once-off fundraising event such as a coffee morning or maybe you would be interested in setting up a local ILFA support group where you live.
You can decide what level of involvement you would like to have. If you are interested in getting more involved, ILFA would like to hear from you.
You can contact us via post @ PO Box 10456, Blackrock, County Dublin; via email @ info@ilfa.ie or by calling 086 871 5264
1) Keep a diary for 2017
Happy New Year! If you're thinking about a new year’s resolution, why not commit to start a diary for 2017? A diary is very useful for recording all your appointments, correspondence, and things you need to do. Its also worthwhile to keep a record of your general health and wellbeing. Write down how you’re feeling, your symptoms and how you are coping with your daily challenges and triumphs including your progress with taking exercise.
2) Choose happiness! Smile and laugh as often as you can even when life is difficult. These simple acts release feel-good chemicals that will help you feel better about life. Good humour and smiles are contagious and will help you connect with others!
3) Plain English
Always ask your doctor and other healthcare professionals to use 'plain English' if they use medical terms or words that you do not understand.
Click the link to read more about some of the medical terms that are used in the management of lung fibrosis.
https://www.ilfa.ie/lung_fibrosis_faq.asp#3012
4) Contact numbers in case of emergency
7) Prioritise tasks
Be flexible and realistic with your time. Prioritise the most important tasks. Make a “To Do” list and group similar activities together, for example, telephone calls, paying your bills, attending to letters and correspondence. You'll feel better when you see the progress you make as you tick these items off your list.
8) Palliative care
Don't be afraid if your doctor or nurse asks to discuss palliative care with you if your health is getting worse. Palliative care is a medical specialty that focuses on relieving your symptoms, particularly breathlessness and anxiety. Palliative care is often wrongly associated with caring only for cancer patients at the‘end of life’. In fact, palliative care can be useful at any time for IPF patients and can help improve your symptoms, well being and quality of life as IPF progresses.
9) Take 5 minutes for yourself
During the day, take 5-10 minutes of quiet quality time for yourself. Sit in a comfortable chair or lie on your bed and concentrate on your breathing and relax. When you feel refreshed, get up and carry on with your day.
13) Plan in advance
When organising a trip away, it is important to plan your travel arrangements and accomodation in advance. If travelling by air, rail or coach, let the travel company know about your medical needs (for example, oxygen equipment, extra power sockets, wheelchair, seat close to the bathroom). Hotels can provide larger rooms or access rooms for people with medical needs. Ask for a room that has a walk in shower rather than a bath if this would be easier for you, and a nearby lift. The staff will do everything they can to make your stay as comfortable and safe as possible.
14) Request a medication review
Ask your Doctor for a medicine review every 6-12 months, especially if you take prescribed medicines for different conditions. Your Doctor may change your prescription or introduce new medicines. Tell your Doctor if you also take other non-prescription medicine including vitamins, supplements and herbal remedies. Remember to tell your Doctor about any side effects you have.
15) Practice gratitude
Practice gratitude and feel the positive benefits it has to offer. It is important to be grateful but also to express your gratitude in order for it to be effective. Tell someone you know something you like, admire, or appreciate about them. You will feel just as great as they will!
16) Tests
If your Doctor tells you that you need to have a test you should ask;
- What is the name of the test?
- Why is the test needed?
- What the test involves?
- Do you need to prepare for the test?
- Are there side effects?
- How long will it take to recover?
- Will you need to stay in hospital and for how long?
- Do you need to have somebody to accompany you?
- When and how will you get the results?
- What do abnormal results mean?
- Is there an alternative test ?
17) Summertime
Now that summer is here, try to ake advantage of the sunshine and brighter days. Vitamin D is known as the 'sunshine vitamin' and it is essential for healthy bones. Step outside, stretch your muscles and get a short burst of safe sun exposure to help with Vitamin D production.
18) Ask for help
Don't be afraid to ask for help. You will be surprised at how keen people are to help when they are asked, especially with practical things like grocery shopping, transport, housework and gardening chores. Asking for and accepting help from others will really ease the burden on you.
19) No excuses!
Regular exercise is very important for patients with lung fibrosis and research has shown that exercise can help improve your breathlessness, muscle strength and quality of life. It is easy to find an excuse not to get moving but exercise should not be something that you dread. Adopt a positive attitude to exercise. You will feel better after making the effort.
Click the link to read more about ILFA's 2000 Steps a Day walking challenge, designed to get IPF patients exercising safely.
www.ilfa.ie/page.asp?pageId=75239
Email info@ilfa.ie or call 086 871 5264 for more information.
20) Air quality
According to the Wold Health Organisation, poor air quality and pollution can have a major impact on patients' health. Older adults, those diagnosed with a respiratory illness and patients with other long term medical conditions are particularly vulnerable to changes in air quality. Generally, in Ireland the air quality is good but when the air quality is listed as 'fair' or 'poor', you may need to reduce the type of activity and amount of time you spend outdoors to limit your exposure to air pollution.
You can check the air quality in your area at the Environmental Protection Agency's website - www.epa.ie/air/quality
21) You can do it!
Don't let negative thoughts impact on your ability to do things. Try to stay positive and believe in yourself. Focus on what you can do, not on what you can't.
22) Information resources
2) The STALL breathing technique.
S = Stop what you are doing, T = Turn up your oxygen and Try to remain calm, A = Allow your mind to visualise a safe place, L = Let yourself daydream and imagine yourself in your favourite, safe and relaxing place, L = Let your breathing return to normal.
3) Positions of ease - Sit down and rest your hands on your knees with your palms turned upwards, lean forward on a wall, or sit upright,
4) A small hand-held fan or an electrical fan that blows cool air over the face can help to improve the sensation of breathlessness for some patients.
31) Find time every day to relax fully
Progressive muscle relaxation is a technique that involves slowly tensing and then relaxing each muscle group in turn, while focusing on your breathing. Find a quiet space, and while sitting or lying down follow these steps.
1) Breathe in and tense you toes for a few seconds, then breathe out and release
2) Breath in and tense your legs for a few seconds, then breathe out and release
3) Breath in and tense your abdomen muscles for a few seconds, then breathe out and release
4) Breath in and tense the muscles of your arms and shoulders, then breathe out and release
5) When you are finished with all of the muscle groups, close your eyes for a few moments and focus on your breathing. Practice this relaxation technique regularly, in order to reap its benefits
32) Keep fit
The importance of exercise and maintaining muscle strength for patients diagnosed with IPF cannot be stressed enough. Maintaining your level of fitness and strength (particularly your leg muscles) is vital for overall health and wellbeing, mobility, independence and quality of life.
Contact ILFA to order our free Patient Information Packs, hand held fans, and exercise resources including the ILFA 2000 Steps a Day walking pack and Exercise DVD for Lung Fibrosis Patients.
Call 086 871 5264 or email info@ilfa.ie
33) Have a plan in place
As winter approaches, ask your doctor for an action plan in case you or your loved one catch a cold or develop a chest infection. It is important that patients with lung fibrosis know what to do in case of illness during the night, over a weekend or during the festive holiday period.
34) Heartburn / acid reflux
There is a higher incidence of gastro-esophageal reflux disease (also called GERD, acid reflux or heartburn) in patients with IPF compared to healthy individuals and those with other lung conditions. It is thought that GERD might promote further lung fibrosis if untreated. Tell your doctor if you develop acid reflux, heartburn, nausea, or if you notice an increase in these symptoms.
35) Be prepared
With all the Christmas preparations in full swing, don't forget to renew your medication prescriptions early and order your oxygen supplies.
Don't leave these important tasks to the last minute!