Staying well

• Everyday challenges
  • Contraceptives and HRT
  • Preventing DVTs
  • Renewing intimacy
  • Coping with side effects
  • Cost of medications – exemption certificate
  • If you need surgery
  • Itchy skin
  • Living abroad
  • MPD ID Cards
  • Planning for travel
• Newsletters
• Videos
• Your state of mind
  • What you may be feeling
  • Invisible diseases
  • Communicating
  • Coping long-term
• If things get serious
  • After a serious clot
  • End-of-life
  • Hospice care
  • Reducing pain and symptoms
• Ways to feel better
• MPDs in pregnancy
  • After delivery
  • During pregnancy
  • Miscarriage
  • Options after miscarriage
  • Planning before pregnancy
• Staying well
  • Staying active
  • Keeping track
  • Reducing stress
  • Eating right
  • Know the signs
• Treatment decisions
• Talking with your doctor

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

Fitness – what’s the goal?

The goal of taking care of yourself is to reduce your chances of suffering a clot, keep your immune system strong, increase your energy and overall to feel the best you can mentally and physically. If you have an MPD 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 MPD 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 MPD. And if you feel any fatigue with your MPD, 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 MPD. 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 MPD 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 disorder can cause background stress. Some great ways to reduce stress and just make you feel good include:

• Talk over your treatment plan with your haematologist
• Try stress reduction activities such as a yoga class or video or meditation
• Talk things over with a trusted friend
• Talk things over with an MPD buddy

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 MPD, especially if you are young and feel well. Some people with MPDs 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 MPD, 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 MPDs 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 MPD, 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 MPD, 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 MPD.

I had to fight back to regain my fitness level after my diagnosis with PV.