As MPD patients, there’s one thing we all have in common: we feel fatigued. But there are solutions available that can give us more energy.
Research shows that fatigue is one of the biggest problems we face as people with MPDs. In 2005, the Mayo Clinic in the US conducted a survey of over 1000 people with all types of myeloproliferative disorders. Over 80% of those surveyed reported feeling tired, regardless of age or treatment regime.
Professor of Medicine Ruben Mesa, M.D. who conducted this study for the Mayo Clinic, explains that even young patients – those who don’t otherwise exhibit many symptoms of their disorder – feel more fatigue than people who don’t have an MPD. Mysteriously, the “MPD fatigue effect” doesn’t necessarily correlate with blood counts or age, which shows that there is a lot researchers still don’t know about the ways myeloproliferative disorders affect our bodies.
Until researchers find better treatments for MPDs, the best approach for coping with fatigue is to take good care of yourself. You can build a healthy lifestyle with three key steps:
It may sound counter-intuitive, even strange, but the best thing you can do to reduce fatigue is to get more exercise. When starting any new fitness regime, check with your haematologist and GP or primary care doctor first.
Changing your diet won’t cure your MPD – but eating a healthy, nutritious diet can help you to feel stronger.
A healthy diet can increase your sense of well-being and give you more energy. If you feel unwell and are losing weight, talk to your doctor about the right nutritional strategy for you, which may be different.
Check that you are getting enough sleep, at least eight hours per day. Going to sleep and waking up at the same time every day can help ensure you’re getting enough rest.
Drink lots of water. Avoid excessive consumption of alcohol and caffeine from tea, coffee or colas.
We’re all affected by stress, and having an MPD is one more thing to worry about. Research at major hospitals around the world is showing that stress reduction can play an important role in fighting illness. Complementary therapies including yoga, meditation and massage have been proven to reduce stress and increase response to medication. If you are feeling fatigued, reducing stress can offer relief.
It’s often helpful to keep a daily log to identify when you are feeling the most fatigued. You can share the results of your log with your doctor to look for problem areas and find solutions. Track your sleep times, quality of sleep, exercise, diet and activities as well as your medications and side effects. After a week or two you may begin to see a pattern in when you feel the most fatigued.
If you feel fatigued, share this problem with your haematologist and GP. It can help if you to be very clear about exactly what you are experiencing – this will assist your doctor in problem-solving together with you. If you are experiencing side effects from medication, give your doctor details about the problems you are encountering, as there may be solutions available. Don’t try to tough it out.
Your haematologist cares for your MPD, but talk with your GP or primary care doctor about your overall health. It’s worthwhile to have an overall health assessment every year to identify and prevent additional health issues. If you have an MPD it’s particularly important to take care of your cardiovascular health.
Focus on the activities that are most important to you, and don’t try to do everything. Get help with daily activities if possible. Plan time to rest. Let your friends and family know that you may need to reserve your energy.
You make it through work, and through your daily chores, but when just surviving takes a toll, patients can find they don’t have the energy for a fulfilling sex life. This can affect your relationship with your partner and your sense of self. Intimacy is important part of life, and you can still enjoy it. The Macmillan website also offers detailed information on sexuality and chronic illness.
For more info on reducing fatigue, please explore our Living with MPDs section.
Build more energy with three steps: improve fitness, eat a healthy diet and reduce stress.