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Interstitial Lung Disease (ILD)

Living with Interstitial Lung Disease

If you've been diagnosed with interstitial lung disease (ILD), you likely have questions about how to best take care of your health.

We can help — with information about how you can pace yourself, stay active, eat healthy, quit smoking and plan for your future. 

Pace yourself

When living with ILD, it's important that you take your time and learn to pace yourself. It's good to be active every day but you need to listen to your body to know when you need to slow down. Pushing yourself too hard can make your symptoms worse. If you have questions about how much is too much, talk to your healthcare team.

Plan ahead

Plan activities for the time of day when you have more energy. Plan your tasks so that you don’t use more energy than you have to. For example, plan your activities to limit the number of times you have to go up and down stairs.

Know your limits

Learn to say no to activities that you think may be too demanding or may make your symptoms worse. Ask for help to do things that are necessary but that you may find difficult. Try to limit yourself to one big event or activity in a single day.

Adapt your usual routine

Cook double the amount of food you need and freeze half of it for days when you may be too tired or busy to cook. You can also sit down while you prepare a meal or do the dishes.

Stay active

It’s important to stay active and even exercise when you have ILD. Being active can help you manage stress, sleep better and feel better.

Speak to your healthcare team about an exercise plan that works for you. They will check your oxygen levels to make sure you have enough oxygen in your blood to exercise. If your oxygen levels are too low, you may be asked to use oxygen during activity.

Stretching

Stretching an enjoyable way to relax your muscles, reduce stress and keep your body flexible. Stretching is a good way to warm up or cool down after other exercises. You should try to stretch every day.

Aerobic exercise

Aerobic exercise includes activities like walking, cycling or swimming that move your entire body. They make your heart, lungs and muscles stronger.

You should do aerobic exercise at least three times a week for 20 to 30 minutes each time. If you can’t exercise for that long, you can break it up until you are able to reach 20 minutes of aerobic exercise without stopping.

Strength-building exercises

Strength-building exercises work your muscles to make them stronger. You can use weights or resistance bands or your own body weight to strengthen your arms, legs and core (stomach and back). Squats, push ups or wall presses are examples of strength-building exercises you can do with your own body weight.

You should do strength-building exercises two or three times a week.

Eat healthy

It's important that you eat a healthy, balanced diet — including vegetables, fruits, protein and whole grains — when you have ILD. Protein helps build muscle and can help make your immune system stronger. Fruits, vegetables and whole grains contain fibre and many of the vitamins and minerals that your body needs to stay healthy. A healthy, balanced diet can help your immune system fight infection. A healthy weight can also make breathing easier and give you more energy.

Use the Plate Method

The Plate Method is an easy way for you to know if you're eating a balanced diet. Half your plate is fruits and vegetables. One quarter of your plate is whole grains, and one quarter is protein. For more on the Plate Method, see Canada's Food Guide.

Eat smaller meals

Eating a large meal may make you tired, and often people have more energy earlier in the day. Eating large meals can cause your stomach to put pressure on your lungs and diaphragm and make it harder to breathe.

Make breakfast your largest meal of the day

Eat your largest meal in the morning and smaller meals and snacks throughout the rest of the day. This can give you enough energy for the rest of the day.

Make water your drink of choice

Drinks that are carbonated or high in sugar can make you feel full, so you don’t eat a healthy diet. Caffeine, which is in coffee, tea and colas, can interfere with some medications, make it difficult for you to relax or fall asleep or make you feel nervous or restless. Alcohol can make it harder for you to fall asleep or lose weight.

Cut back on salt

Salt can cause your body to retain water, making it more difficult to breathe. Limiting salt is especially important if you have high blood pressure or heart disease or are taking corticosteroid medication. Look for the word “sodium” (salt) on food labels. Processed foods like canned soups, canned fish or meats can have a lot of sodium. Try to limit your salt to less than 2400 mg (or about one teaspoon) per day. An easy way to limit your salt intake is to remove the salt shaker from your table. This can help reduce the temptation to add salt to your food.

Eat foods with fibre

Eating foods that are high in fibre can help you feel full so you don’t eat too much. High-fibre foods include nuts, brown rice and whole grains.

Avoid foods that can cause gas or bloating

Gas or bloating can make it harder for you to breathe. Foods like beans, broccoli, cabbage, cucumbers, peppers, turnips and carbonated drinks are just some of the foods that may cause problems for you.

Manage your stress

Everyone has stress — it's a normal part of life. Living with ILD can cause you to feel stress as you learn how to cope with your disease and its symptoms. Learning how to manage your stress can help you stay healthier and happier.

Practice breathing exercises

When you’re stressed, your heart rate and your breathing speed up. When you breathe faster, your breathing gets shallower, which can make you feel breathless. Feeling breathless can increase your stress and cause anxiety. Breathing exercises, or controlled breathing, can help you relax when you are feeling stressed or anxious and can help stop the cycle of stress and anxiety.

For more on breathing exercises, see the information on Pursed-lip breathing and Belly breathing below.

Pursed-lip breathing is an exercise you can do that reduces the number of breaths you take, slowing your breathing and helping you feel more relaxed.

Start by breathing in through your nose. Then, breathe out through your mouth, for at least twice as long as your breathed in, with your lips pursed or puckered.

For more information, watch the American Lung Association's video on pursed-lip breathing.

Belly breathing is also called diaphragmatic breathing. It's another way you can slow your breathing and feel more relaxed.

Start by sitting or laying comfortably so that you can relax your chest and shoulders. Breath through your nose. Pay attention to how your belly fills with air. Then, breathe out through your mouth, for at least twice as long as your breathed in. Make sure to lower your shoulders and relax your neck as your practice.

Listen to relaxation apps or recordings

There are many free or low-cost apps that provide soothing background music or nature sounds, like the sound of rain falling or waves on a beach. Focusing on your breathing and the sound of music or nature will help you slow your breathing and become more relaxed.

Exercise

Exercise is good for your body and can help you manage stress. Yoga, tai chi and Qi Gong are forms of exercise that can be done at your own pace. They help you learn to focus on controlling your body and your breathing. They also keep you moving and active and can help you become more flexible and improve your balance.

Quit smoking

Stopping smoking can slow the progression of your ILD. In addition to quitting smoking, you should also stay away from sources of second-hand smoke (other people smoking near you). 

Quitting smoking is difficult for most people, but there is help. There are different nicotine-replacement therapies and medications that can used on their own own or in combination. Your healthcare team can help you create a plan to quit smoking that includes methods to manage cravings and withdrawal.

For more information, see How to Quit Smoking.

 

Nicotine-replacement therapy (NRT)

Patches, gums, sprays or lozenges that contain nicotine can provide your body with the nicotine it craves while you quit. NRTs are available over the counter (no prescription needed). You can use more than one type of NRT or combine NRT with medication and/or other stop-smoking aids like support groups or counselling.

The evidence to support vaping as a smoking cessation tool is inconclusive. Vaping may be a less harmful alternative than cigarettes, but it still carries risk.

Medications to help you quit

You can also ask your healthcare provider about what medications are available to help you quit.

Champix© (varenicline). This medication blocks the affects of nicotine in your brain so you don’t want to smoke. A prescription is required for this medication.

Zyban© (burpropion). It isn’t known exactly how this medication works to help you quit smoking. It can help you deal with the withdrawal affects of quitting. A prescription is required for this medication.

Medication works best when paired with counselling. Quitting with the help of counselling and medication will give you the best chance to quit smoking for good.

 

Plan for your future

Your ILD will likely get worse over time, so it is a good idea for you to plan for the future. This can be hard for some family members. It may be hard for you, but some people feel better knowing they have a plan.

Making your plan

The plan does not have to complicated. It's your plan for your health and your future, so it can be anything you want it to be. A time may come when you are not able to tell your family or healthcare team what you want. Making a plan and talking to them about it will let them know what's important to you so that they can help support you. It will also make it less stressful for your family when making difficult decisions about your care.

Getting started

Asking yourself the following questions can help you get started in planning for your future:

  • How will I manage when I have a flare up?

  • Who will help me? When do I need help from my healthcare team?

  • What are my options if my disease gets worse?

  • Do I want to use oxygen therapy when this happens? When do I want to start it?

  • What things do I want to do while I’m healthy? How can I do these things?