Journal for Best Health

By August 19, 2018ePatient

For me, the work of maintaining best health with a chronic disease takes large parts of each day. I feel fortunate when the routine just flows without thinking. Like walking used to feel.  I didn’t have to focus on each step I took. Now I scan for uneven pavement, pick up my left foot high enough not to trip, and check my fuel gauges: Have I reached my daily step limit? Has my medicine kicked in yet that helps my impaired nerves work so I can safely walk? Should I walk where ever I’m going or use the electric wheelchair or Lyft? I miss thoughtless walking. The process I use for managing and adjusting my self-care routine includes experimentation, tracking, journaling (journaling is narrative tracking), adjusting. I try to create a care plan for myself complete with goal and actions – project management. I use lists, spreadsheets, and iPhone/Apple Watch reminders to manage the plan and see how it’s working. Sometimes I use the plan and tracking until the goal is reached, retired, or hardwired – no thinking needed. I tracked my twice-daily vision exercises for about a year until my brain shifted the way it combined images in my brain and my double vision decreased by about 75%. I don’t need the vision exercises anymore, hence I don’t need a plan or tracking. I do my stretching, core, balance and strengthening work every other day without thought or tracking. It’s hardwired and doing what it’s supposed to do – slow progress of the MS and reduce the risk of falling. On the other hand, losing and maintaining weight is never-ending. I will always check and track my weight daily. There’s no reaching the light at the end of that tunnel. Keeping track of my steps is effortless with myApple Watch – immediate feedback. But I will never stopping needing to track steps. I track the time I play my baritone saxophone every day. Helps to keeps me motivated. Then there’s pain, sleep, and worry. I should have a written and specific plan with a basket of activities or habits I can test and use. I’ve found that nothing works every time (although regular water, mindful living, and Tylenol, going to bed early, and occasional Ativan are pretty constant). With pain, sleep, and worry I find that the work of planning and journaling can feel overwhelming, especially when in pain, not sleeping very well, or in a rush of worry.

When I think about best health and technology, I most need my personal health record to help me by integrating my goals, plans, and journal and making it accessible to me and my health team. Probably the journal is the hardest part to digitize. Speech recognition is probably a necessity. Hopefully, there’s a designer out there working on an extremely low effort app to help us keep journals and better manage sleep, pain, and worry. Haven’t found what I need yet.

Late note: here’s an interesting post in the Society of Participatory Medicine’s Open Forum Community about Patient Notes. You can read for free. Need to be a member to comment.  Join for $50 a year.

Photo by Simson Petrol on Unsplash

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Danny van Leeuwen

Danny van Leeuwen

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


  • Donna says:

    I think what comes across well in this post is that there is so much that people don’t realise/see that goes into managing day-to-day life with chronic illness. How in tune we need to be with our bodies, how often we have to check in and analyse things. And how we need ways to keep track of all that. It’s all consuming but so important.

    • It’s interesting to me that we work very hard to attain peak performance while a spoonie. When I was younger, pre-diagnosis, I wasn’t close to peak performance. Scary to think what I could have accomplished. Few well people I know even think in these terms.

  • Ileana Balcu says:

    Hugs Danny! It’s hard to imagine you can do all this and still be an optimist and do all the work that you do.

    I am frustrated as well that what I want to track changes all the time. My tools change with it, but I wish I could have it all in one place.

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