Living with PV (polycythemia vera) is something you may need to do for several years. Fortunately, during that time you may not even know you have PV because you may not even experience any symptoms. While you’ll develop your own strategies to help you manage your disease while maintaining your quality of life, there are some things that’ll help.
Time Management
You shouldn’t try to do everything at once. Instead, practice staying in the moment and focusing on what’s happening now so you can address life head-on. Sometimes this may mean asking for help from your friends and family. These people want to be there to support you so be open and specific with them (e.g. bring you a meal, watch your children, give you a ride, talk to you).
Invest in Yourself
It’s important to make time for yourself and the activities that you enjoy. This could be as simple as taking a walk or gardening. It may mean continuing to work. Regardless of what you do, make sure you adjust your activities to fit your energy level and physical condition. One way to help boost your energy level is to engage in mind and body activities like yoga or meditation. Even engaging in some simple breathing exercises are beneficial as they can help reduce feelings of anxiety. You may want to try some guided imagery techniques too as they’ll help shift your mind away from your current concerns.
Get Support
It’s nice to have someone available to go with you to your doctor appointments and medical procedures. This is helpful because then you’ll have an extra set of eyes and ears to help you remember your questions and interpret the information you receive.
You may also want to look around for a support group that meets either online or in person. Joining such a group will allow you to meet other people who can share your experiences with you. This is great because then you have people to compare things with and seek opinions from. When you take the time to do this for yourself you’re taking the time to feel supported and cared for.
The Bottom Line
Living with PV may make you feel worried or afraid. It can be stressful for both you and your loved ones. This is why it’s important to create a plan for managing your disease and maintaining your quality of life.