Tag

self-care

Pillow, pills, poop, piss, and pain #004

By | Caregiver, Episode, Family man | No Comments

Episode Summary

  • Blood, sweat, tears shared by two.
  • Helping one end and another begin.
  • A disaster that ultimately gives back.
  • Hearts clubbed by diamonds in spades.
  • We learned, we cried, we continued.
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Stoking My Fires

By | Advocate, Caregiver, Clinician, ePatient, Family man | No Comments

Success is feeling like I have too much to do two days a week, not enough to do two days a week and not thinking about it for the rest. Today is a too much day. I missed a scheduled call. I was writing this post and missed it!!  Too funny.  How do I manage when I actually do manage, you ask? Well, if my wife wants to do something with me, the answer is yes. Same with my kids and grandkids. Then my health routine – steps, stretching, strengthening, balance, and stress management. Playing my horn. Blogging weekly. Finally responding to requests from my network cronies, making money and advocacy. (Note: I am retired and my family is all independent and healthy). So really the slack for me is only in those last ones. And health is the blowing up wildcard.  When health dips, my spiel is BS.

My latest struggle is saying no to pro bono work. So many intriguing opportunities. But time is precious. Keys to time management success are well-defined commitments, deliverables, and timeframes; calendar, and task lists; plus strong partners and collaborators. Strong partners and collaborators make the work fun and efficient. The fun stokes my fires. This week the Society for Participatory Medicine’s one-day conference stoked my fire. What stokes yours?

Photo by Dominik Lange on Unsplash

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Journal for Best Health

By | ePatient | 5 Comments

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. Read More

Reading the Room and Yourself

By | Advocate, Caregiver | No Comments

Sometimes I feel like I’m part of someone else’s play. Just dropped in. I don’t know my lines, I don’t know the other characters. I think I’m in a drama, yet it feels like a farce. The stage is ever changing. Have you seen those round, rotating stages where the props keep changing? I think I’m playing myself, but I’m not quite sure. On top of it, I feel like crap, I’m exhausted, I’m cranky. I exit, stage right, left, whichever. What just happened? What do I do now? Oh yes, time to live life again.

When I worked at Boston Children’s Hospital, I took a class from the Big Apple Circus clowns. These are people who go from room to room visiting kids and their parents or go to scary procedures with them and help them feel better for a couple of minutes. The class was on reading the room. Sizing up the characters, the dynamic, the vibe in the room and then selecting a path forward. The kid is hurt, angry, and withdrawn. There’s tension between the hovering adults. What can you do? In seconds they insert themselves, do something odd or funny, draw out the child, and break the tension. Read More