Staying well

You (or your family member) has a myeloproliferative neoplasms (MPN) so you will be wondering if it’s too late to stay well? We assure you the answer is absolutely not, and it’s more important than ever to look after your health.

In this video John, who has polycythaemia vera (PV), talks about his diagnosis and how he now stays fit continuing to cycle at a near-professional level since developing his MPN. See our top ten tips for staying well after the video.

Fitness – what’s the benefits?

The benefits of taking care of yourself is to reduce your chances of suffering a stroke/clot, to keep your immune system strong, to increase your energy and overall to feel the best you can mentally and physically. If you have an MPN and you are feeling well, there is almost no limit to what you can do! And if you’re not well, gentle daily exercise can help you to feel better.

Our tips for staying well

Get or stay active: The best advice from MPN experts in the UK and the US is that you should stay active. If you haven’t been active before, start with an easy exercise programme that you can make time for every day, and build up gradually from there. If you’re already fit, that is great news! Mix it up by trying new sports such as swimming, join a gym or take a yoga or tai chi class to complement what you are doing already.

Eat a healthy diet: A nutritious, balanced diet is something that’s important for everyone, not just people with an MPN. And if you feel any fatigue with your MPN, a great diet will really pump up your energy level! Try adding more vegetables and fruit, swapping out animal fats for healthy fats (olive and nut oils), choosing lean sources of protein and limiting consumption of sugar, white flour, trans fats, and processed foods, in particular processed meats in your diet.

Stay hydrated: It is very important to stay hydrated when you have an MPN. Drink plenty of water, reduce consumption of caffeinated drinks such as colas, tea and coffee, and exercise caution when drinking alcohol. A general rule of thumb is to drink eight glasses of water per day.

Manage stress: Having an MPN can add to the stresses of daily life. Going to clinic, taking medications, taking time off work, and even just being aware that you have this condition can cause background stress. Some great ways to reduce stress and just make you feel good include:

Protect yourself from injuries: Use common sense when participating in sports to protect yourself from injuries. Wear a helmet or other protective gear when cycling and skiing. Plan ahead for a ski trip by exercising your muscles for several weeks or months ahead of your trip; having strong muscles can help prevent injuries.

Treat your body with respect: It can come as a shock to learn you have an MPN, especially if you are young and feel well. Some people with MPNs find that learning they have this disorder can give them an increased focus on caring for their body. Living a normal lifespan is the goal; you didn’t ask to have an MPN, but many aspects of your health are within your control. The most important things to do are:

  • Stop smoking. If you need help, talk to your GP or primary care doctor, or visit the NHS SmokeFree page.
  • Moderate your alcohol intake. Many people with MPNs suffered their first serious clot after a night out at the pub.  If you drink alcohol, it’s best to drink in moderation, and drink a glass of water for each glass of alcohol. Some people stop drinking alcohol altogether and find that they don’t miss it as much as they thought they might. If you need help with stopping or reducing your consumption of alcohol, please contact your GP or primary care doctor for more information or visit the NHS LiveWell pages.
  • Get to a healthy weight. If you are overweight and you have an MPN, you can reduce your chances of suffering a serious clot by getting fit. Get help from your GP or primary care doctor.  The NHS and the Mayo Clinic also offer excellent information on healthy living.

Build relationships: It can be hard to talk with friends, families and partners about your MPN, especially if you look well. You may feel that others just don’t understand. The best approach is to make a plan about what you want to say, help your friend or partner understand the medical terms, and talk about your own feelings. You may also find it helpful to get peer support from another person with an MPN.