Today I’m bone tired. Tired of grief, tired of having MS. Interesting how physical health and mental health go hand in hand. Medical challenges weaken our reserves, at the very least make us crabby fearful, anxious – tired. Medical challenges drain our ability to coördinate, think critically, advocate for ourselves, have perspective, when we most need these skills. Mental health challenges can make it harder to identify – even mask – and work with medical issues. How do we rejuvenate from being run down from physical or mental ill-health? How do you take a break-get some rest? I find that small things help – wear the brightest bow tie when I feel the worst, have a piece of chocolate, cuddle with my honey, take 5 minutes to bitch and moan, drink lots of water, take a power nap, listen to Paul Simon’s Graceland, enjoy smaller meals, laugh, cry, or sigh, eliminate manageable stress, exercise, get a massage. What works for you?
As I transition out of this episode of my life with the passing of my mom, I’m reflecting anew on being a blogger, Health-Hats, who is discovering the magic levers that impact best health. I’m back to values – what’s most important to me as an e-patient, caregiver, nurse, leader, informaticist, and family member. Anyway, what do I value? In alphabetical order, as my priorities change minute to minute
I’m disabled. Iidentifyashaving a disability. Someone else says I’m disabled. Do Ihave a disability? I’m a family caregiver of someone with a disability. Do I have lived experience? What does all this mean? This week I found myself in several conversations about disability. One was with a person newly diagnosed with a chronic condition facing a significant impact on his life who feared he was now disabled. Another conversation was about what constituted lived experience – frequent hospitalizations, a family caregiver, a person in recovery, a person with a physical disability who remains highly functioning, someone dependent on others for many activities of daily living? The population is aging. The longer one lives the more likely they are tohave a disability. Sometimes two people have the same challenges in function – one identifies as disabled, the other doesn’t. One town considers only limitations in locomotion as a disability, others include other challenges.
As an e-patient advocate, I passionately believe in each of us being the pilot for our own health flight. So many legs in that health flight. While its a non stop flight for each of us from birth to death, it’s actually a journey with innumerable hops. As I re-enter my own health journey with energy now for others’ journeys, I’m struck by the shifting prominence of health team members. Sometimes we need a health team member to be our co-pilot, someone to take the wheel, read the map, or pave the way. A friend this week had an unwelcome and unusual constellation of symptoms – disconcerting, disruptive, freaky. This friend needs a co-pilot – a doctor to advise, diagnose, refer, integrate results. I had sudden acute abdominal pain. I also needed a co-pilot. As my mom was dying we needed several co-pilots: a hospice nurse to manage symptoms and equipment; a friend to manage logistics of care; and a mid-wife of dying to manage personal care and spiritual needs. Another friend is trying to lose weight. His co-pilot is a trainer. Ultimately, you can’t always be a solo pilot. Recognizing the need for a co-pilot, finding one, and trusting her/him is a magic lever of best health.
Closing the loop with grief. The P’s of dying pile up – the first six P’s from my mom, the last two from others: Pillow, pills, pee, poop, pain, phone + pistol and peace. Now we deal with Parting. As an experienced observing participant, parting offers a re-entry atmosphere of connection, exhaustion, awkwardness, ambivalence, busyness, reminiscence, and loneliness. I’m hoping next week to focus on a different topic in my post. Thanks to those of you who have shared this journey with us and commented. Living and parting go together. Oh, ma.