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Would You Like To Become More Involved With ILFA?

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

Tip of the week 2017

 

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

Prepare a list of all your emergency contact telephone numbers including your family contacts, GP surgery, local hospital, pharmacy and your oxygen supply company. Keep this list somewhere prominent and easy to find in your home. Its also a good idea to keep a copy of the list in your wallet , purse and oxygen carry case, and give copy to your spouse, partner or companion.
 
5)  Pulse oximeter readings
IPF causes patients to become breathless and have low blood oxygen levels, especially during exercise or any activity that requires effort (exertion).
If your GP is going to measure your blood oxygen levels (with a machine called a pulse oximeter), you should march on the spot for a while or walk up and down the corridor before the reading is taken. If you have been sitting in the waiting room, your pulse oximter reading will only reflect your resting state and there may not be a significant change in oxygen levels.
It is more important and useful to have a reading that accurately reflects how your body reacts to exertion. Don't be afraid to tell your doctor this.
 
6)  Exercise, exercise, exercise
Exercise is as important as medication. As well as following your doctor’s instructions when taking medicine, you should prioritise exercise. Daily exercise will help to keep your muscles strong and your lungs working to the best of their capacity. The ILFA 2000 Steps a Day exercise challenge and Exercise DVD are designed specifically for lung fibrosis patients taking their limitations into account. Email info@ilfa.ie or call 086 871 5264 to request your exercise pack

 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.

10)  Thinking of a holiday?
If you are planning a holiday, remember to let your doctor, respiratory nurse and oxygen company know well in advance. It is important to allow plenty of time in order to get the "all clear" from your doctor and to make all the necessary travel arrangements. If you are booking a flight, you should let your airline know if you will need oxygen for traveling and its a good idea to book a seat near the toilet. As the airplane climbs higher, the air pressure changes and air oxygen level falls which can affect your breathing, especially if you need to move around the plane. Turn up your oxygen if you are struggling with breathlessness and lower it again when your breathing has settled.
 
11)  Power nap
Take forty winks. Why not try to take a power nap for 20 minutes during the day. Try to nap before 4pm and always set your alarm clock for 20 minutes to avoid over sleeping. Short power naps can help you relax, leave you feeling refreshed and revitalised and could result in increased energy.
 
12) Cleaning your nasal cannulae
If you are on oxygen, it is important to clean your nasal cannulae daily with a damp cloth. You should not use kitchen wipes or baby wipes as they contain chemicals that can affect the tubing.
You should replace your nasal prongs every month or when they become dry and hard, and after a respiratory infection. Contact your oxygen supply company if you have any questions.

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

Have you been recently diagnosed with lung fibrosis or do you know someone who has been recently diagnosed?
Visit the Irish Lung Fibrosis Association's website www.ilfa.ie to see our patient resources.
Contact ILFA on 086 871 5264 or email info@ilfa.ie to order a Patient Information Pack and/or the 2000 Steps a Day walking pack and exercise DVD. All our patient information resources are provided free of charge to lung fibrosis patients.
 
23)  Breathe easy
There are some easy techniques that you can practice to help you manage and control your breathing when you become breathless including;
1) Repeating mantras in your head or aloud, for example,
    "I have survived this before, it will go away"
    "There is nothing to be frightened of, I will be ok"...
    "I am fine, I will be fine"
    "In with calm, out with fear".

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.

 
 
24) Be mindful of your breathing
Mindful breathing for a few minutes each day can restore a feeling of calm and help ease stress and anxiety. Everyday try to take a few quiet moments for yourself and follow these instructions.
1. Sit upright on a chair
2. Close your eyes
3. Concentrate on your breathing
4. As you inhale, think of your favourite place
5. Exhale slowly
6. Continue to breathe slowly and deeply this way for a few moments and allow yourself to relax and unwind
7. Open your eyes and carry on with your day
 
 
25)  Me time
Fatigue (extreme tiredness), anxiety and stress can all have a negative effect on your breathing. Therefore it is important to set aside some time time everyday to relax both physically and mentally. Try to relax by listening to soothing music, meditating, reading a book or doing something else you find relaxing? Even 10-minutes of relaxation a day can have a positive effect.
 
26) Set small goals
Don't be daunted by long term goals, for example, to get fit, lose weight or reach a milestone. Set yourself small, realistic, achievable tasks that represent small steps towards your ultimate goal. This will allow you to take control on a day to day basis and will help to maintain your motivation. You can do it!
 
27)  Be informed
The best things you can do to help yourself adapt to living with IPF are:
• learn more about IPF
• work closely with your healthcare team and ask them questions
• take responsibility for your own health and treatment
 
28)  Tax relief for medical expenses
You can claim tax relief on medical expenses including doctors and consultant’s fees, prescribed treatments and medicines, diagnostic procedures, the purchase of a wheelchair or wheelchair lift, physiotherapy, chiropody or podiatry services. Complete the form MED 1 Health Expenses - Claim for Relief. This is available from your local tax office or can be downloaded at this link;
http://www.revenue.ie/…/personal-tax-cre…/documents/med1.pdf
 
 
29)  Ask about vaccinations
Ask your hospital doctor if you should get the flu vaccine or the pneumonia vaccine. Aslo make sure to ask your family members to consider getting the flu vaccine so that they do not put you at risk of catching the virus from them.
 
30)  Be prepared and stay safe during a storm
  • Stay indoors. Don't take any risks by going outdoors.
  • Listen to a radio station or television for updated emergency information. Have batteries for your radio in case of a power cut.
  • Make sure your mobile phone and tablet devices are fully charged.
  • If you are on oxygen, know what to do in case of a power cut.
  • Have a torch, candles, matches, lighters and spare batteries at the ready.
  • Eat and drink regularly to keep up your energy and prevent dehydration.
  • Boil some water and put it in a thermos flask in case there is a power cut.
  • Check on your relatives, neighbors, and friends, particularly if they are elderly or if they live alone.

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!