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Living well with Myelofibrosis

From working as a team with your haematologist  to manage symptoms, to giving your lifestyle a healthy upgrade, there’s a lot you can do to help yourself live well with myelofibrosis (MF).

Eat right

A balanced diet is important for everyone, but it’s particularly important if you have MF as eating well can help lower your risk of some complications:

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You’ll reduce your chances of cardiovascular disease. 

People with MF have an increased risk, but eating a healthy diet can help to reduce it. Too much salt is connected to high blood pressure, while too much saturated fat is linked to high cholesterol, both of which can further raise your chance of having a heart attack or stroke.

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You’ll keep to a healthy weight. 

This is important with MF, as being overweight can raise your risk of having a heart attack or stroke. Conversely, some people with MF find it hard to eat enough due to loss of appetite and symptoms such as nausea. Eating the right way can help you maintain your weight.

Small changes to try

Sometimes, symptoms can get in the way of having a healthy diet. If you have an enlarged spleen, you may feel uncomfortably full, which can put you off eating more than a small amount, while fatigue can mean you don’t feel up to preparing nutritious food. Here are some easy ways to supercharge your diet:

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Pick heart-friendly foods.

Have at least five daily servings of fruit and veg – try having a fruit smoothie or glass of juice, topping your breakfast cereal with chopped apple, snacking on dried fruits, having salad with every meal, and throwing extra veg and beans into dishes like curries and pasta sauces. 

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Eat regularly. 

You may find it easier to go for small, frequent, high-calorie meals and snacks instead of three main meals, such as yoghurts, fruit smoothies and rice puddings.

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Reduce salt and fat. 

Try to cook meals from scratch as processed foods can be high in salt. Try flavouring dishes with garlic and herbs instead and choose lean cuts of meat.

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Plan ahead.

Getting organised can help ensure that you eat healthily even when you’re tired. Cook dishes like chicken casserole, vegetable curry or bolognese sauce in bulk on days you feel well and freeze individual portions for the days you don’t.

Stay active

Doing some exercise is very important for people with MF. 
That’s because:

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It reduces your risk of heart disease. 

People with MF are at increased risk of heart disease and staying active is a great way of boosting your heart health.

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Activity boosts your energy levels. 

While fatigue might mean you don’t feel much like exercising, doing a little bit of exercise can actually boost your energy levels.

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Staying active can help you manage stress. 

If you’re feeling anxious about your condition, or its effects on your family or other aspects of your life, fitting in some exercise could help you feel calmer and cope better.

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Exercise helps you maintain a healthy weight.

It can also lower your chances of developing a clot, as well as reducing your chances of other conditions such as diabetes.

Small changes to try

The amount and type of exercise that you can do will depend on how your condition affects you. Always speak to your haematologist before you start any new exercise regime to check it’s safe, and make sure that you stop if you feel dizzy or breathless, or your heart’s racing. Your doctor may be able to help you draw up an activity plan that works for you. Here are some suggestions to get you started:

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Incorporate more activity into your day.

However active you are, there are always ways to do a little more. If you need to buy some groceries, you could walk part of the way to the shops. Or, when you have a hospital appointment, you could park your car a little further from the entrance. If you feel up to it, pick the stairs over the lift, and when you’re waiting for a train, try walking up and down on the platform. It all adds up!

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Exercise with a friend.

Setting a time to exercise with a friend can motivate you to see your plan through, as well as making it more enjoyable. Why not combine a spot of socialising with some activity, for example, by arranging to go for a walk in the park before heading to a café for a cup of tea? Or you could suggest trying a new activity together, whether that’s pilates or golf… whatever appeals most to you.

Looking after your mental health

It’s natural to feel worried about certain aspects of your life, especially when you have a long-term condition like MF. According to health psychology specialist Clare Moloney, ‘It’s important you address your worries, as they can affect your mood and enjoyment of life, and feeling down may mean you don’t feel as motivated to look after your health. Often, sharing our concerns and taking practical steps to deal with them can relieve you of a lot of your worry.’ Try her tips to help you deal with some of the most common concerns for people with MF.

Small changes to try

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Get your priorities in order.

When you’re living with a chronic condition like MF, it can be tempting to try to carry on as normal. But symptoms such as fatigue can make this harder, and overloading yourself can lead to stress. It’s important to be realistic about what you can and can’t do, particularly on days you don’t feel so well. You might find it useful to make a list of everything you would like to get done that day and number each task according to its importance. That way you know you will get the most important things done first and the rest can be done the next day if necessary.

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Ask for help.

It can sometimes be difficult to ask others for help but chances are that the people in your life will be glad to know how they can help you out. For example, perhaps you could ask your grandchildren to water the garden, or a neighbour might be able to pick up a bit of shopping for you when they go to the shops. These small things can help take some of the pressure off you and can create a nice sense of community.

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Have fun!

This should be an easy step, yet socialising and enjoyment can fall by the wayside when you’re busy with work, family duties and jobs around the home. And when you’re coping with a long-term condition like MF, you may also get focused on your appointments and management schedule, which may seem to leave little time for fun. So make a point of doing at least one enjoyable thing every day. 
This could be as simple as sitting down to watch an episode of your favourite comedy, inviting friends over for a takeaway, listening to a record you love, browsing social media sites or meeting up with a friend for coffee.

Where can you find more support?

It’s always good to meet and chat to other people with MF who might be experiencing similar symptoms and feelings to you.

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The Leukaemia Foundation is dedicated to ensuring every Australian with blood cancer gets access to trusted information, best-practice treatment and essential  supportive care to improve their quality of life. 

To learn more about the many services they provide, including emotional and practical support, call 1800 620 420 or visit  www.leukaemia.org.au.

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MPN Alliance Australia is a patient-led advocacy group that collaborates with the Leukaemia Foundation towards the common goal of achieving better outcomes for Australian patients with MPN. 

MPN Alliance Australia shares information and links to helpful resources, organisations and support services for the benefit of patients and their families. You can read more about MPN Alliance Australia at www.mpnallianceaustralia.org.au.

Disclaimer: inclusion of these Australian websites is to provide further resources to patients that are independent and not affiliated to Novartis.