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More: Journal for Best Health

By August 26, 2018ePatient

Julie Holliday, a reader of last week’s post, wrote:

I found this post very difficult to read. It sounded so interesting and I wanted to consider sharing it but just got lost in the dense sea of words. Could you consider making more paragraphs?_______________________________________________________________________

Ok, Julie. Here goes:

I seek best health for myself and others. I define best health as operating at peak performance as often as possible over time.  It’s living the best life possible given my genetics and biology, social circumstances, and physical environment – all of which are either out of my control or I have limited control. I can’t change my genetics, but with great difficulty, I could move somewhere else (physical environment). With less difficulty, I could increase my mobility with a handicapped public transportation pass (social circumstances).

However, sometimes I can control my medical care and more often I can change my individual behavior. Still, these are not easy and require planning, experimentation, and effort. The problem with chronic illness is that the opportunity to be thoughtful and try stuff out can be rare and short.

To reach for best health I find that I need to have goals and a plan. My goals are to progress as slowly as possible, fall infrequently, don’t mess with my pathological optimism, hang out with my family, and keep playing my baritone saxophone. My plan is to be as active as possible, stay limber and keep my core strong, play my sax 4-6 hours per week, and manage sleep, discomfort, and anxiety. I need activities that are likely to maintain my level of function and prevent faster progression. These include walking 3,500 steps a day, riding my recumbent trike 2-3 times a week, stretching and strengthening exercises, keeping my weight down, etc. I also need activities that help me when I’m feeling miserable – falling, hurting, freaking, exhausted. I need tools in my basket that work some of the time – nothing works every time. Some work more often than others and some work better but make me feel bad in other ways. I can’t do narcotics unless it’s totally unbearable as it makes me depressed, clouds my brain, and I can’t poop. So I need lots of other stuff to try.

Now to last week’s blog – Journal for Best Health. For me to manage myself and best health I need to keep a journal (diary) and keep track of the what I try and how it works and when it works – or doesn’t. I use lists or spreadsheets to track steps, weight, exercises, time playing my sax, etc. When my plan is to do something specific, I need to track that I’m actually doing it. Filling in the numbers and reading it motivates me. It’s mindless, it’s habit, it feels good to see that I’m doing what I know I need to do. It feels good after the fact. The journal, a narrative rather than a list, serves as a place to record what I’m trying when I don’t feel so well, and what the day has been like around that event. For example, it’s 90 degrees and humid,  I drank one cup of water with my medicine at 6 am and 12 noon. I walked at noon, tripped and fell at 1 pm. Or I can’t sleep. My mind is racing. I’m worried about [whatever]. I get up. I meditate. Nothing. I drink some water. I sit in the massage chair. I go back to bed. The point is that writing it down – just writing it down – helps me let go for a minute.  Then, when I feel better I can go back and look. What was going on, what did I try, did it work? Now I can say, hmm that didn’t work. Next time let me try X. The thing is, I can’t predict when I’m going to feel bad, so a journal is a diary of life. As detailed or sketchy as you like. Occasionally I hear from someone that they tried something that worked for them. I could try it too. Or I read some research that A is more likely to help than B. Who knows? But I keep track of whatever I try. I thought about doing it, I actually did it. Whatever.  Then periodically when I have more than no energy and less than enough energy to live life normally, I can go back and review my lists and journal/diary and look for patterns and opportunities. I find it helpful to take diary, journal, and tracking excerpts to share with family, friends, coaches, and doctors to review. They may suggest alternatives or point out things I didn’t see.

The bottom line: learning what works requires a mindful approach. Much will not work. I value the ability to adjust and try something else. Diaries and journals can help.

Look – full disclosure: I’m only fair at this stuff.  I could be better at it. I know more than I actually do. I don’t always take my own advice. But it’s always worth it when I do. The worse I feel, the more I do it.  And I do feel like I’m living at maximum capacity – best health – for now. That pumps me up.

Ok, Julie Holliday.  Is that better?

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Danny van Leeuwen

Patient/Caregiver activist: learn on the journey toward best health

One Comment

  • MSS says:

    Danny…glad you are back to writing blog posts. I love reading them. I’m sure your podcasts are wonderful…but I really don’t listen to podcasts…! So KEEP WRITING when you can. Love you bro!!

    Mary Sue