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. Here’s some advice for easy lifestyle changes that can leave you feeling better.
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.
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:
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:
Staying physically active is important for everyone, but exercise is particularly important for people with MPNs. Here’s why:
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
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:
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:
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:
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:
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:
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.
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.
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.
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: