Ready, Set, Go — Start Your Self-Care Challenge

What exactly is Self-Care? Years ago I used the term, Self-Management Health Behaviors to identify everything I did to enhance my health given that I was diagnosed with a chronic, progressive neuromuscular disease. Some of the behaviors were already my routine like eating a vegetarian diet and practicing yoga. As I learned more about positive health behaviors from a Stanford University program I took at my local hospital, I became more intentional about how I led my life.

Health Storylines Tool Library

Somewhere along the way these behaviors became known as Self-Care. You can find Self-Care articles everywhere — in all types of popular magazines, TV commercials — it’s entered popular culture. “As of 2012, about half of all adults—117 million people—had one or more chronic health conditions,” according to the U.S. Government’s Center for Disease Control. That’s tremendous!

Even though there are so many different types of chronic health conditions, there is a lot of overlap with symptoms. I have a rare disease but when I look at my individual symptoms — muscle pain, dysphagia, fatigue, respiratory weakness — I can learn a lot from more common conditions. And many of these common conditions have known self-care practices that help mitigate the symptoms.

Based on the Stanford research I became familiar with and my own research, I’ll categorize the self-care practices into these:

  • Diet and Nutrition
  • Physical Activity and Exercise
  • Emotion Regulation
  • Social Support
  • Relaxation
  • Medication

Once we identify our symptoms, we start to look for ways to alleviate these symptoms. What helps my muscle pain may not help your muscle pain. But, perhaps you’re like me, and you are open to exploring. The key, of course, is to explore self-care practices that have minimal if any negative side-effects. During the experimentation phase you may notice some connections; maybe you have less muscle pain on days you’ve slept at least 8 hours the night before? Or, if you have gastrointestinal issues, maybe your gut feels better when you haven’t eaten spicy foods?

It’s a lot to manage but once you hit upon some solid patterns and adopt new self-care routines, it can make your life so much better. It sure has for me.

This trial-and-error process can now be easier with the assistance of a tool. I’m thrilled to introduce an online tool — Health Storylines — to help with your self-care routines. I’ve been chosen to join a team of Self Care Ambassadors who are helping others with chronic health conditions practice self-care. We’ll be doing this together and each month I’ll take a Self Care Challenge with you. Make sure you’re part of our Facebook group so we can track, monitor, and motivate each other.

Are you ready?

Here’s what I’d like you to do over the next month:

  1. Register for the Health Storylines Tool. If you have questions about the registration process, send me a message via the Facebook group. You can use the Tool on a desktop computer, smart phone, or tablet. The data you enter will synch on all devices.
  2. Use the Symptom Tracker feature to list all of the symptoms associated with your chronic health condition.
  3. Using the Self-Care Practices categories above, make a list of self-care practices you already have as part of your routine. Maybe you attend a weekly exercise class? How does exercise impact your symptoms?
  4. You’re encouraged to explore the other features of the Tool on your own. But for the next month I’ll focus on symptoms and different self care practices that can help them. The goal is to take small steps toward changing your routines so you’re not overwhelmed and it makes it easier to maintain a steady practice.

Good luck and see you in the Facebook group!


That Peaceful Easy Feeling

To celebrate my birthday, one of my requests was a day at the spa. Not just any spa but this Zen-style spa out in the woods about an hour and a half from where I live. It’s pricey but it’s an experience. And that’s what I’m after — experiences — not more stuff. I’ve got enough stuff.

 The day began with a lovely drive on the back roads of Sonoma County. It was unintentional but the GPS fed us this circuitous yet gorgeous route. I saw parts of Sonoma I’ve never seen — so green and lush — it’s amazing how just a drive through more nature, less concrete, can ease your tension.

The massage treatment I signed up for focused on the body’s meridians and included essential oils. Surprisingly, the 75-minute treatment has you wearing loose clothing; it reminded me of a Thai massage I once had. Although I usually dislike lying on my stomach, I went for it in spite of the nearly constant sinus drainage I experience. The therapist moved my limbs in different ways than an ordinary massage would necessitate.

I didn’t fall asleep but I was very relaxed. It’s often disconcerting that you have to get up so soon after a massage but I felt a little less pressure here. I wasn’t forced to face the world too soon. What awaited me after the massage was a beautiful meditation garden which you enter through a gate that requests silence.

In the last couple of years I have a new respect for silence. I crave it. Is this part of growing older? Or perhaps it’s a result of having a neurological condition where I often find my senses overwhelmed by bright light and a cacophony of noise?

Seated under a pagoda sipping warm tea, I just watched and listened (and naturally shot a little video). My body was relaxed, my mind was relaxed. I was in the moment.

Can I capture this moment again and again? I want this moment to last longer. I want this moment to repeat, and repeat, and repeat.


Sickness & Grief: Lessons Learned

In the final stretch of fighting the FLU, I decided to explore why my immunity may have been off. It’s a story, a short story, that I hope is thought-provoking for you. 

If you’re interested in learning more about building your immunity, check out this month’s featured book selection in the side bar. For more on respiratory health, make sure you listen to this podcast episode. Check out the latest news about the flu season from the CDC.

If you want a reliable companion while fighting sickness, check out Alexa and the Echo Plus. Okay, Alexa is not a reasonable substitution for a human or pet but she never once complained that I was asking her too many questions.

Not a bad companion when you’re bedridden.


Annual Neurological Exam

This week I had an appointment with the neurologist who diagnosed me twenty years ago. (I talk about my diagnosis in the first podcast episode.) It’s really been great having the continuity but three years ago I had to leave my insurance plan. My spouse got a new job and Kaiser wasn’t an option. My 3-year experience with another healthcare system is a long story which I need not go into now. Suffice it to say, I’m thrilled to be back with Kaiser and my neurologist, even though I’m her only DM1 client.

Before she came into the exam room I noticed several new informational posters tacked up to the walls. There were articles and classes promoting different types of exercise and movement for people with Parkinson’s disease, Multiple Sclerosis (MS), and stroke survivors. Kaiser even has special support groups for adults with MS. But this poster was the most impressive — all about stress and how it manifests both physically and emotionally. That’s really the basis of my self-care treatment; whatever I can do to mitigate stress in my life so that I feel better. And there are so many stressors in life. Thankfully I continue to add to my tool case of de-stressors.

In the past I’ve always had a long list of questions and issues to discuss with my neurologist during our annual appointment. There have been periods when I saw her more frequently than once each year. But now, I feel like I’ve got a good handle on things and only had a few questions. We talked about many things — travel, my experience with a different healthcare system — and she did her routine exam which seems kind of subjective since she’s manually checking my strength and range of motion. She’s done this every year and takes notes so perhaps it’s less subjective than it seems.

To my surprise, she was surprised. With just about each test she remarked that I’d improved. She even said a few times, “you’re stronger!” I don’t want to get too excited; I won’t be signing up for any marathons or Himalayan treks. What I will do is continue the program I have cultivated — gentle yoga, Pilates, qigong and a multitude of other healthy physical and emotional behaviors.

 I walked out of the doctor’s office feeling quite full of myself. I know I have a progressive muscle disease. I know it’s dramatically changed the course of my life. But I’m going to do whatever I can, for as long as I can, to live the fullest life possible.


Exploring Self-Care: What is Urban Zen?

Valerie uses Reiki therapy, one of five modalities used in Urban Zen Integrative Heealing

Valerie uses Reiki therapy, one of five modalities in Urban Zen Integrative Healing

Urban Zen integrates the practices of Reiki, aromatherapy, body scans, breath awareness, and movements/restoratives to initiate self-care and healing. In a conversation with Valerie Jew, I learn how these modalities can help not just people with chronic health conditions but caregivers as well as health care providers.

You can visit the Urban Zen Foundation website to learn more about this program.

Valerie recommends the following books to learn more about any of the specific modalities used: