Family viewing , triaging, and MPN tracking

I found a really good video that you may want to view with your family that explains a lot about MPNs, why we're tired, and how it affects our lives. The speaker is Dr. Robyn Scherber, Mayo Clinic MPN expert. Even if some of the science is over your head (and I admit it's often over mine, which is why I have a doctor ...), the 30-minute video covers a lot of ground. It will help your family understand that, even though we don't look sick, we are often jealous of our time and energy.

As always, many thanks to MPN Advocacy & Education International for making these conference videos available! They are linked in the Resources list at right.

One tip from Dr. Scherber we all follow, even if we don't know we're doing it, is "triaging." Triage is just a medical term for prioritizing. When you have a lot of fatigue (and, if you're like me, this can vary on a daily basis), decide what you absolutely have to get done or feel you have the energy to do. You put those things at the top of your list. Dr. Scherber points out that 80 percent of what we do on a daily basis is going to have no effect on our lives in five years ... so think about that as you determine what's important.

I'm an incurable controlfreak and list maker. Here's what my list looked like for today (in order of importance). You can see what I crossed out after triaging:

Call my GP about elevated blood pressure levels.
Shampoo day.
Delicates laundry.
Make granola snacks.
Vacuum the house.
Write a new Got ET? blog post.
Prepare some return packages.
Do dishes and tidy kitchen counter.
Clear out kitchen cupboards.
Make supper.
Put slow-cooker soup together for tomorrow (work day).
Read and knit.

Out of 12 things, I am ditching 4--that's about 30 percent of what I wanted to get done.

One of the things that this kind of list can be used for is to track your fatigue levels on the MPN10 app, which Dr. Scherber mentions in the video. The app lists 10 common symptoms for all MPN patients. You rate each of them on a scale of 1-10. The app keeps track of the trends. This can help you in a conversation with your doctor.

It's sometimes hard for me to really gauge my fatigue because I feel tired pretty much all the time. The list gives a more concrete picture of what I've been able to do in a day. For instance, if I can do all but 30 percent of the things on my list, my fatigue level is a 3. If I can only do 50 percent of the things on my list, I'm at a fatigue level of 5. You get the idea.

To prevent too much self-monitoring, I just monitor on Mondays, which is also the day I get my blood pressure and weight checked.

Hoping these resources help you and your family! Be well!

Related: Fatigued? You're not alone

Related: What ET fatigue feels like

Related: Our poll: Fatigue is the biggest problem for ET patients

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