Life hacks
Life hacks
Tips and tricks for everyday life
Explore these suggestions from people with PNH and emotional health expert Dr. Guy Winch to help improve your everyday life with PNH.
Do the most stressful task first
Don't put deadlines on your to-do list
Include some things on your list that you enjoy
Delegate to others
Break down big tasks into smaller, more achievable chunks
Include rewards for yourself when you complete a task
Prep the night before
(ex: set up your coffee or make your lunch)
Identify each day as a "go" day or a "no" day and adjust your list accordingly — both are ok
Automate regular tasks like paying bills or having groceries delivered
Choose your "spoons" carefully each morning based on how you feel
Find creative ways to get chores done when you're too tired
(ex: like training your dog to chase a laser pointer when you don't have the energy for a walk)
Reassess your list mid-day and adjust it based on your energy levels
Get a robot vacuum
Create a weekly routine
(ex: laundry on Tuesday, grocery shop on Thursday)
Celebrate small accomplishments, even if it's just taking out the trash!
Start or end each day by writing down three things you're grateful for
If one strategy doesn't work, try another — you didn't fail, you successfully realized you need a different approach
Schedule self-care in your calendar
Think about things you CAN do vs what you CAN'T
Treat yourself the way you would treat a friend who is having a bad day or asking you for support
Don't be afraid to put yourself before others — it's not selfish, it's what you need
Don't let PNH consume your thoughts
Accept help
Let go of what others expect of you
Take time to slow down and recharge
Create code words with those close to you so they know you're having a "PNH day"
Include your children in the conversation — be open and honest with them about your PNH so they know what's going on and what to expect
Be brutally honest about how you're feeling and what you need
Join a PNH support group
Connect with the community for additional support — social media, conferences, AAMDS
Log your symptoms so you can talk to your doctor
When talking to your doctor, ask questions — as many as you need to make an educated decision
Share your story with others
Be honest with your doctor about how you're really feeling
Treat yourself the way you would treat a friend. If you feel like you've lost your connection with someone, try having a deeper conversation one day, or ask your friend for support
These tips and tricks were developed by individuals who were compensated by Apellis Pharmaceuticals, Inc. Every person’s experience with PNH is unique. This is not meant to be individual treatment or medical advice. You should speak with your doctor about questions you may have on PNH, its symptoms, and treatment.