Your doctor will discuss ways to manage your MPN, in order for you to feel as well as you can. The best part is that you may only have to make some simple lifestyle changes to have a real impact.

Your doctor will monitor your condition but you also play a vital role – alongside your doctor – to manage your condition and your symptoms. Following your doctor’s advice on how to manage your MPN, as well as adopting a healthier lifestyle can help lower your risk of complications. The goal is to help you to cope with your symptoms and reduce their impact so you can get on with enjoying the things you want to do – whether that’s meeting up with friends, keeping up with your hobbies, going to cultural events or playing with your grandchildren. Here’s some advice for easy lifestyle changes that can leave you feeling better.

Eating & Nutrition

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

  • You’ll cut your chances of cardiovascular disease. People with MPNs 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.
  • You’ll keep to a healthy weight. This is important with an MPN, as being overweight can raise your risk of having a heart attack or stroke. Conversely, some people with MPNs 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:

  • Pick heart-friendly foods. Have at least five daily servings of fruits and vegetables. 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 vegetables and beans into dishes like curries and pasta sauces.
  • Go fishing. Aim to eat at least one serving of oily fish each week, such as salmon and mackerel, as these are high in omega-3 fats that have been shown to help keep your heart healthy.
  • Eat regularly. You may find it easier to go for small, frequent, high-calorie meals and snacks instead of three main meals, such as yogurts, fruit smoothies and rice puddings.
  • Avoid salt and fat. Try to cook meals from scratch to steer clear of the added salt found in processed foods, and flavour dishes with garlic and herbs instead. Go for low-fat versions of food, cut down on butter – instead, cook with canola or sunflower oil and dip bread into olive oil – and choose lean cuts of meat.
  • Plan ahead. Getting organized can help you ensure you eat healthily even when you’re tired. Cook dishes like chicken casserole, vegetable curry or pasta sauce in bulk on days you feel well and freeze individual portions for the days you don’t. Try shopping online for foods which can be stored for a while and cooked quickly when you need them, like nutritious soups, long-life milk, fruit juice and tinned fruit, and foods which are easy to prepare, such as cereal, pasta and frozen vegetables.

Serving size: A serving of fruit or vegetables means 80g, equivalent to four florets of broccoli, a pear, or seven or eight strawberries.

Exercise & Activity

Staying physically active is important for everyone, but exercise is particularly important for people with MPNs. Here’s why:

  • It cuts your cardiovascular risk. People with MPNs are at increased risk of cardiovascular problems from clotting and staying active is a great way of boosting your heart health.
  • Activity boosts your energy levels. While fatigue might mean you don’t feel much like exercising, it’s worth making an effort as getting active is one of the best ways to feel revitalized
  • 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 with worry
  • Exercise helps you keep to a healthy weight and cut your chances of developing a clot, as well as reducing your chances of other conditions such as diabetes and heart disease

The amount of exercise you can do depends on how your condition affects you – some people with MPNs are able to exercise as they always have done, while others can do very little. Always speak to your doctor before you start any new exercise regime, to check it’s safe, and stop if you feel dizzy or breathless, or your heart’s racing, and seek medical advice. Your doctor may be able to help you draw up an activity plan that works for you.

Some exercise tips

  • We should all be doing 30 minutes of exercise that makes us slightly out of breath, five times a week, but that can feel a tall order if you’re tired or not feeling well. Make it easy on yourself by breaking the 30 minutes into three chunks of 10 minutes spread throughout the day. For example, start with 10 minutes of stretching, then walk in your neighbourhood and back, followed by 10 minutes of gardening or another activity later in the day.
  • Getting active can be easier if you exercise with a friend - making an arrangement can motivate you to see your plan through, it can also make it more enjoyable. You can combine socializing with some activity, for example, by arranging to go for a walk in the park before heading to a café. Or you could suggest trying a new activity together, such as yoga, Zumba class, line dancing or golf - whatever appeals most to you both!
  • However active you are, there are always ways to fit more activity into your day. When you have a hospital appointment, park your car at the furthest point in the car park from where you need to get to. Pick the stairs over the elevator, and when you’re waiting for a bus, walk back and forth on the sidewalk instead of just standing. It all adds up!

When you don’t feel well…

Don’t give up on exercise even on those days you don’t feel terribly well. There’s always something you can do, even if you’re in bed or sitting in a chair. Try shrugging your shoulders up and down, wiggling your fingers and toes and opening and closing your hands. On days you feel a bit better, you could try a gentle walk or some housework or gardening. However, if you’re very tired or in pain, listen to your body and rest.

Fatigue & Sleep

Fatigue is one of the most disruptive symptoms of MPNs.Pacing yourself is important for getting the most from the energy you do have, as well as preventing yourself from getting more tired. Here are some tips to help you pace yourself:

  • Allow lots of time to do everything. This should mean you’re less likely to try to push yourself, or need to rush. For example, if you have a hospital appointment, allow plenty of time to get there and aim to arrive much earlier than you need to. That way, you’ll avoid having to use up precious energy hurrying. If you do get there early, you can use the time to relax with a magazine.
  • Say “no.” If someone suggests an activity and you’re too tired, it’s fine to explain that you’d prefer to leave it for another day. You’ll be better company when you’re rested.
  • Build in breaks. Schedule breaks into everything you do, but don’t wait until you feel tired before you take one. So, if you’re doing some housework, tell yourself before you start that you’ll sit down and have a tea or coffee after 10 minutes. Breaking jobs down into small chunks with rests in between takes far less out of you.
  • Rest and recuperate. Allow yourself time to lie down or nap during the day if you need to. Don’t try to keep going when you’re tired – remind yourself that you need to take extra care of yourself on bad days. For example, if you’ve spent the morning with friends or your grandchildren and feel exhausted, plan to put your feet up after lunch. Never feel guilty about doing this: remind yourself how important it is that you look after yourself.

Sleep well

Getting a good night’s sleep is especially vital to help you best manage fatigue and exhaustion. Sleeping well will help you cope better with fatigue when it happens and will likely also make you feel more calm.

Here are some tips for getting a good night’s sleep:

  • Go to bed and get up at the same times each day so your body gets into a routine.
  • Make sure your sleeping environment is comfortable: your room should be tidy, soothing, dark and quiet – not too hot or cold.
  • Take time to relax before bed – try a warm bath, read or listen to the radio, and avoid caffeine, nicotine and alcohol within six hours of going to bed.
  • Deal with worries by addressing your concerns as best you can during the day, such as by speaking to your doctor about medical concerns or with trusted friends for other matters.
  • Manage sleep disruptors. If night sweats are disturbing your sleep, make sure you use cotton clothing and bedding, rather than synthetic fibres, which can worsen sweating. You could also try keeping the window open. Or if itchy skin is keeping you awake, try using soothing emollient creams to help. If these symptoms continue to disrupt your sleep, your doctor may be able to offer suggestions to help manage them.

Smoking

For everyone, smoking further raises the risk of heart disease and strokes, as well as being linked with a range of other serious issues such as lung cancer. So, if you smoke, quitting is one of the very best things you can do for your health.

Some tips for quitting:

  • Speak to your doctor, who can offer support such as nicotine replacement therapy or put you in touch with local stop-smoking groups.
  • Let friends and family know you are planning to quit, and explain how important it is for your health.
  • Avoid things or habits that remind you of smoking, including removing lighters and ashtrays from your home.
  • As much as possible, avoid other people when they smoke.

Travel

For most people, having an MPN doesn’t have to mean no more holidays. Whether you’re planning a weekend away or an exotic trip, follow these tips to get organized:

  • Check with your doctor

Before you finalize plans, ask your doctor if it’s safe for you to go away and to your planned destination.

  • Plan your trip

Once you’ve got the go-ahead from your doctor, it’s time for the fun part: planning your trip. Enjoy the distraction from your health concerns.

  • Get prepared

Make sure you get travel insurance that covers you for any claims related to your MPN. Before you go, write down a number for your doctor or nurse so you can take this with you and contact them in an emergency. It’s also a good idea to pinpoint local hospitals and health centres at your destination.

  • Stay safe on your journey

MPNs mean you have an increased risk of deep vein thrombosis (DVT), a potentially very serious type of blood clot that is associated with long-haul flights or any long journey where you’re sitting in one place for long periods of time. Your doctor will tell you whether it’s safe for you to travel. If it is, you can further help to reduce the risk by:

  • Wearing loose clothing and considering compression stockings
  • Keeping the room under the seat in front of you free so you can stretch your legs
  • Bending and stretching your legs, feet and toes while seated, every 30 minutes
  • Taking occasional short walks around the cabin if you’re flying, or stopping to stretch your legs if you’re in a car; walking up and down the aisle if travelling by train
  • Drinking plenty of water, particularly while flying
  • Avoiding alcohol, which as well as contributing to dehydration can make you feel drowsy and less likely to move around.
  • Keep it healthy

Everyone needs to be aware of potential problems when away from home, such as the dangers of food poisoning in a different country and sunburn in warmer climates. As you may become tired easily due to your MPN, pace yourself. Do a few things and enjoy them rather packing in too much. Build in relaxation time.

  • Enjoy yourself!

Relationships & Support

Your doctor isn’t the only one who can help you cope with your MPN – seeking support from other people in your life can make things that much easier.

Family and friends

Whether you’re struggling with fatigue, pain or discomfort; worrying about the future, or have concerns about how your MPN is being managed, sharing your feelings and asking for support can help, making you feel less isolated. While it’s not always easy to ask someone for help, it is important, and good friends and family members will likely be pleased to help you out. Be as open as possible with them about what you are thinking and experiencing. People often are uncomfortable when they know someone has a serious illness, so take the lead to tell them how you are feeling and how they could help you.

Support groups

Chatting to other people who are going through similar experiences can be invaluable, particularly if you find it hard to talk to loved ones. That’s where support groups come in. And these can play a particularly important role when you have a rare condition like an MPN, as other people with these conditions can be a great source of information about everything from what to expect from treatment to coping emotionally. See the list of Canadian support groups here.

Therapy

If you’ve been struggling with low mood or anxiety for more than a few weeks, and it’s affecting your sleep and interfering with your ability to do the things you want to, it may be time to talk to a professional. It can be easier to talk to a therapist, who isn’t involved in your life, as you may feel more able to speak freely about what’s concerning you, without having to worry about the effects on them as you might with loved ones. Speak to your doctor about being referred to a counsellor or psychologist. If you’re reluctant to do so, remember that while lots of people find it difficult to talk to a doctor about their emotional health, your doctor will be used to dealing with these sorts of issues.

Talk to your children

Choosing whether or not to tell your children about your condition can be a big decision and will depend partly on their age. But bear in mind that even young children pick up on things and are very aware of problems, so it can be better to explain. Avoid saying anything too complicated to young children. Instead, try to tell them very simply that you have something wrong with your blood, so sometimes you feel tired and uncomfortable and aren’t able to play as usual. But reassure them by saying your doctors are looking after you well and you’re having treatments that help you.

Managing your worries

It’s natural to feel anxious about certain aspects of your life when you have a long-term condition. Here are some troubleshooting tips to tackle some possible concerns.

I feel scared about having a disease I’ve never heard of

This is a very natural reaction to a condition like an MPN. Share your concerns with others who have MPNs through online or in-person support groups. Listening to what others have to say can help you feel a lot less isolated and hearing how they’ve dealt with their worries may ease some of your concerns.

I hate to think of being a burden

A lot of people with chronic illnesses get anxious about the thought of becoming a burden to loved ones. If you feel concerned you may be putting too much strain on your friends and family, you may try to struggle on by yourself, which could affect the way you feel, so it’s important to tackle this worry. We all have different times in life where we can give help to others and need help from others. Ask for help, but also tell others you don’t want to be a burden so they are free to say no; they will likely reassure you.

I’ll be treated differently at work if people know I’m ill

It’s best to be honest with your HR department and employer about your condition, so they have the full picture and understand why you might need time off. Lots of people have different health issues and it’s likely you’re not the only one in your work place. When you talk to your manager, keep it simple: tell them about the condition you have and explain it’s being managed. You may even be able to come to a flexible arrangement, such as working from home some of the week to save your energy rather than having to do a tiring commute. You might also want to tell some of your colleagues about your situation, so everyone understands – they may be able to help take on some of your work on days you don’t feel well. However, this depends on the relationship you have with people you work with, and you don’t need to tell colleagues if you don’t feel comfortable doing so.

I’m concerned about what will happen to my finances if I can’t work in future

This is a common worry for people with chronic illnesses. There are lots of “What if…” situations in life and this is one of them for many reasons. If it bothers you, talk to a financial advisor and make a plan. Share your concerns with trusted family and friends who may also have positive ideas to help.

My relationship with my partner will change because of my condition

It’s true that having a long-term condition like an MPN can have an impact on your intimate relationship. At first, you may both be focused on coming to terms with the diagnosis, and symptoms such as discomfort and fatigue can affect your sex life and the amount of time you spend doing pleasurable things, such as going out for meals or seeing friends. It’s important for both of you to be honest about this impact and your concerns to work out solutions.

Relax with mindfulness meditation

Research has found a type of meditation called mindfulness meditation can be very effective in reducing anxiety.[ Kabat-Zinn J, Effectiveness of a meditation-based stress reduction program in the treatment of anxiety disorders, Am J Psychiatry 1992;149:936-943.] So try this mini-meditation whenever you need to unwind:

  • Lie down in a comfortable position, or sit in a chair, if you prefer.
  • Close your eyes and focus on your feet and toes, becoming aware of any sensations such as tightness or discomfort, and breathing slowly.
  • Repeat this, moving up through each area of your body, including your pelvis, abdomen, chest, arms and face
  • Then open your eyes and bring your attention back into the room. Doing this ‘body scan’ regularly should help you feel more relaxed, but if you find it difficult, you could download a guided meditation from the internet or get hold of a meditation CD.