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About myMPNteam
Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What Creative Tips Or Tricks Do You Have, Big Or Small, That Make Your Everyday Life Easier?

What Creative Tips Or Tricks Do You Have, Big Or Small, That Make Your Everyday Life Easier?

A myMPNteam Member said:

I would not say it is any one thing, It is really a set of coping strategies. This is my list.

1. Support from my family, friends, and faith community.
2. My MPN friends/family).
3. Maintain your sense of humor and find ways to have fun no matter what.
4. Surround yourself with things that are positive and lift you up.
5. Mindfulness practices - I practice Qigong.
6. Say the Serenity Prayer every day and take it to heart!
7. Educate yourself about your condition(s). Knowledge is power.
8. Create a high-quality treatment team who you trust.
9. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the MPN.

posted 25 days ago
A myMPNteam Member said:

One thing I learned when I spoke with a psychiatrist about this disease was that if you are a list maker, don't make a long to do list. Instead of 10 things to get done only put the 3 most important things down. If you can do more, great but having that long list with many things left undone just wears you out mentally and can cause unneeded guilt issues. Works better for me.

posted 23 days ago
A myMPNteam Member said:

I identified the time of day that I normally have the most energy. This is between 9am - 1pm. I get most of my work/study and exercise done between those hours.
I used to be a morning person and would practice my yoga and study between 4:30am - 7am but now I feel exhausted when I first wake up. Making a new daily routine has really helped.

posted 25 days ago
A myMPNteam Member said:

Not creative but this is what has worked for me. Rest, lots of water, volunteering and setting a timer (my range) for how long I will either do house work or rest.

Also making an effort to enjoy each day.

posted 24 days ago
A myMPNteam Member said:

I keep a scale of each day, 0 being normal and 10 being the worst. I track each day in an app and a spreadsheet. I have determined that if I’m at a 5 or 6 I can power thru the fatigue. Greater than 6 I need to rest. I am also trying to determine my cycle by graphing the data captured.

posted 25 days ago
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