Exercise, oxygen use and conserving energy

Exercise – what you should do and what you can do

A big problem for people with  lung fibrosis is the fear of breathlessness, this 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).

ILFA STALL Breathing Technique

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 info@ilfa.ie or calling 086 057 0310 to request your STALL breathing technique card.

Equipment

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 or exercise pedals in the house, use them for daily exercise.

ILFA has a series of exercise videos and DVDs that were developed for patients. Visit the pages at Livivng Well With Lung Fibrosis.

How to 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.

Upper Limb exercise

Single arm exercises with a wight – 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.

Lower limb exercise

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 that won’t slide. 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 the 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!

The F.I.T.T.Programme

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.

Remember

• Don’t set impossible goals for yourself.
• Gradually increase the time you exercise for, and don’t overdo it.
• Don’t deplete yourself, you’ll feel awful and get discouraged if you do.
• If you have been sick, start back gently.
• Weather conditions will affect your ability to exercise – very cold weather will increase breathlessness. So choose your time to do things.
• Do not exercise too soon after a meal or drinking alcohol. Your blood supply is a closed system, so if it’s gone to your stomach, your gut and your liver it can’t go to your lungs and your heart. Have a rest after your meals and then go do your exercises an hour or two later.
• Do not exercise when you have a fever or an infection.

Counselling may help you if you are struggling with your daignosis of lung fibrosis. Counselling can also help patients and carers to cope with the prospect of a lung transplant.

•  Counselling is about helping you to find creative responses to your situation, present difficulties and needs. A counsellor will provide you with time, attention, respect and support, as you discover your own resourcefulness.
•  Unlike a friend or relative a counsellor is a professional who is trained to listen in an accepting and non judgemental way.
•  With a counsellor you can express your feelings openly and frankly without being afraid that he or she will become burdened by them.
•  Your hospital Social Worker should be able to advise you about what counselling services are available to you. They may also be able to recommend private counsellors
•  The Psychological Society of Ireland is the registration body for psychologists including counselling psychologists.
•  The Irish Association for Counselling and Therapy provides a national directory of accredited counsellors and therapists which includes details of the counsellor’s qualifications and areas of specialisation.
•  The Irish Council for Psychotherapy has a register of accredited psychotherapists including family therapists.
•  Good advice given to a severely disabled patient: to take one day at a time; not to look back or forward.
•  Ask your doctor if you would like to be refrred to a counselor.

Also see the section on Social Work: How the Hospital Social Worker Can Help.

Carer’s Benefit

You may qualify for Carer’s Benefit if you meet these requirements:

• you are over 16 years old
• you have been employed for at least eight weeks, whether consecutive or not, in the previous 26-week period of commencing Carer’s leave
• you are/were working for a minimum of 16 hours per week or 32 hours per fortnight within the previous 26 week period. You do not have to meet this condition if you were getting Carer’s Benefit in the previous 26 weeks
• the care recipient must have a disability that meets the full-time care and attention requirements as set out in section 99 [2] of the Social Welfare Consolidation Act 2005
• the maximum you earn is €332.50 a week after taxes
• you must not take part in employment, self-employment, voluntary work, training or education courses which accumulate to more than 15 hours a week prior to 1 January 2020 and no more than 18.5 hours a week from 1 January 2020
• you do not live in a hospital, convalescent home or other similar institution
• you meet the social insurance (PRSI) contribution conditions
• being a full-time carer means you must be living with, or in a position to provide full-time care and attention to, a person who needs care. The care recipient cannot live in a hospital, convalescent home or other similar institution.

Carer’s Leave

Carer’s leave allows employees to leave work temporarily to provide full-time care and attention for someone who needs it. You can take carer’s leave for a minimum of 13 weeks and up to a maximum of 104 weeks. If you ask to take less than 13 weeks’ carer’s leave, your employer may refuse your request.

Carer’s Support Grant (previously called Respite Support Grant)

The Carer’s Support Grant is an annual payment made to carers who get Carer’s Allowance, Carer’s Benefit or Domiciliary Care Allowance (DCA).

It can also be paid to certain other carers providing full-time care. Carers can use the grant in whatever way they wish.

The Carer’s Support Grant is €1,850 for each person you are caring for. It is paid once each year, usually on the first Thursday in June.

The Carer’s Support Grant is fully exempt from income tax, PRSI and USC.

Carer’s Allowance

Carer’s Allowance is a payment to people on low incomes who are caring full-time for a person who needs support because of age, disability or illness (including mental illness). The person being cared for must require full-time care and attention.

The maximum weekly rate of Carer‘s Allowance will increase by €5 with proportional increases people on reduced rates of payment (January 2022). The weekly rate for a qualified child will increase by €2 from €38 to €40 for children under 12 years of age. It will increase by €3 from €45 to €48 for children aged 12 years.

Respite Care

Your Public Health Nurse will advise you about respite care provisions.