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 branch 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 @ firstname.lastname@example.org or by calling 086 871 5264
A big problem for people with IPF is the fear of breathlessness, and this fear can lead to immobility and disability. It is important to break out of this cycle and to manage your breathlessness, rather than let it control you. We all get breathless doing activities and exercising because we need to take in more air (and oxygen) to give us energy. Moderate shortness of breath is acceptable and necessary, and should not prevent you doing going out and taking part in everyday activities and exercising. If you are breathless, stop and get your breath back when you need to – find your own strategies for doing this- like stopping to look in a shop window for a while even though you are not remotely interested in buying anything. Learn the STALL Breathing technique (see below).
The ILFA STALL Card is designed to be carried in a wallet, purse or pocket and it has simple instructions on how to control your breathing if you experience breathlessness. Show this card to your caregiver / companion so that they can help you if you have breathlessness.
(S) Stop what you are doing
(T) try to remain calm and turn up your oxygen if necessary
(A) assume a position of comfort for example sitting, leaning forward against furniture or a wall, resting your shoulder against a wall for support
(L) let yourself daydream and imagine yourself in a safe, relaxing, tranquil place
(L) let your breathing return to normal.
Contact ILFA by emailing email@example.com or calling 086 057 0310 to request your STALL breathing technique card.
You don’t need a lot of equipment to exercise. All you need is one set of arms and one set of legs, a bit of will power, and some very cheap equipment like the steps of the stairs and a small plastic bottle full of water can be used as a weight for arm exercises.
If you have an exercise bicycle in the house, use it for daily exercise.
It is important to start with a low amount of repetitions.
If you start off with great intentions and are too ambitious, you could overdo it and end up exhausted. This could have a negative effect and and you might never feel that you want to exercise again. You should increase your exercise gradually; two repetitions of an exercise is easy to start with, but two becomes six, six becomes twelve, and after a few weeks you’ll be surprised at how many you can do.
Do single limb exercises for example raising your arms or lifting a 500ml water bottle if you can. Don’t lift your two arms over your head together, this will put you under pressure and increase your breathlessness. You should raise your arms over your head one at a time. Right arm, rest; alternate to the left arm, rest. Try some leg exercises too. Alternate lifting your arms and legs.
Do your exercises regularly throughout the day, every day. Particularly in the early stages when you are doing a low amount of repetitions, try to do them at least twice a day. Make exercise part of your daily routine. Exercise is as important as taking your medication.
SINGLE ARM EXERCISES WITH A WEIGHT– this could be your bottle half-filled with water. Start in a seated position. Before you begin, consciously relax and lower your shoulders – roll them backwards, bring them up to your ears and drop them down.
Do four or five single arm movements to the front, punching forward, first on one side then the other side; four or five arm movements reaching up to ceiling, one arm then the other arm; four or five movements lifting straight arm with weight out to side. You can time it to music if you like. Start with four or five movements and add one or two a day.
A low weight and high repetitions is better than using a heavy weight and not doing as many repetitions.
MARCHING ON THE SPOT: lift your knees so they are parallel with your hip. March for a count of five to start and build it up gradually. Counting slowly helps you control your breathing.
SIT TO STAND FROM A CHAIR: use an ordinary kitchen chair. Initially you might need your hands on your knees to help you stand up. Our large leg and bottom muscles eat up oxygen so they need to be kept reasonably fit. Again start doing a few and build up.
STEPS OF STAIRS: step up and down for a count of three, four or five. Again build it up gradually and please use the bottom step of the stairs, not the top!
WALKING is a challenge to anyone with breathing problems but it is important to do it. Walk outside every day if possible even if it’s only to the garden gate. You might manage it once, twice, or you might manage it more often than that. No other exercise gives you a total all over body exercise. The large muscles of your body with your heart and your lungs all work together when you walk. You can do it anywhere even in the hospital. Try to challenge yourself every day to do some walking. The bigger the muscle the more oxygen it needs, and the less a muscle does the more unfit it becomes and the more oxygen it will eat up on you. If you can make your muscles a little bit fitter you’ll find it easier to do things. The idea is to change what we can change. If you can’t change the condition of your lungs try to change the condition of your muscles.
BICYCLE: if you have one start off doing 30 seconds and build up to three minutes, maybe five. Build up slowly. The most important item of equipment on a bicycle is a comfortable seat and a good window to look out of while you’re on it so you don’t get bored!
FREQUENCY: How often should you exercise?
Twice a day.
INTENSITY: How hard should you exercise?
Judge the intensity of your exercises by your breathlessness. You should aim to be moderately breathless when exercising. This may vary from day to day depending on how tired you are, and whether you are recovering from an infection or not. If you keep it to this level you won’t overdo it.
TIME: How long should I exercise for?
Begin low and build up. You’ll find a point where you’ll plateau- that’s ok, stay there. If you get a knock back or have an infection, you start low and build up again.
TYPE: What kind of exercise should I do?
High repetitions, doing the exercises a lot, and low weights.
Walking is an ideal exercise for lung fibrosis patients. Read more about the ILFA 200 Steps a Day exercise programme for lung fibrosis patients, at the end of this page.
Your body needs a decent supply of oxygen to function properly, so use your oxygen supply. You won’t become addicted to oxygen - we all need it to survive! Use oxygen to help you when you are eating, chatting, washing or having a shower, and when you are active. Adjust the oxygen level to suit the level of your activity. If you are sitting down you might need less oxygen, if you are moving around increase the flow of your oxygen. Turn your oxygen up when you are exercising.
Use your portable oxygen when you leave the house. It may not look beautiful, and we all have pride, but you have to be practical. Try not to be embarrassed with your oxygen, it is much more worse to be breathless and distressed without your oxygen. Oxygen will improve your ability to do things and help you to enjoy life more fully.
If you do not have a portable supply of oxygen, talk to your doctor about getting one.
Plan ahead. If you are going somewhere, give yourself plenty of time to get ready and prpeare so that you are not rushed an breathless.
Use seats where possible, for example in the shower, in the kitchen , bathroom or bedroom. Sit down when you are drying your hair or shaving.
Get wheels for your portable oxygen. This will help you to conserve your energy.
When you go out, use a Rollator or a shooting stick that you can use as a seat if you need to stop and rest. Lean on the shopping trolley when you are in the supermarket.
The Wheelchair Syndrome: Most people resist using a wheelchair, but why waste energy strugging to go somewhere and then have no energy left when you get there. Use your energy wisely for doing the things that you enjoy. No one wants to be in a wheelchair, but it is important to get the balance right between pride and practicality.
Wheelchairs can be rented or bought from the Irish Wheelchair Association.
Click here to learn more about this exercise challenge that is designed specifically for Lung Fibrosis patients.