Many of you know that Jamie and I walked the Camino Portuguese last April. We started from Porto and walked 170 miles over 15 days. Many people
use a Camino as a meditative time to learn more about themselves and the world. I spent my time worrying about Jamie.
We kind of knew something was wrong. It had been developing slowly for a few years, but while walking it became evident. He wasn’t getting better despite walking 170 mile. Plus he fell seven times but who’s counting? Me! I Fortunately, no injuries except bloody knees. My active imagination kicked in. I feared the worst. We knew he needed further evaluation. He saw a neurologist when we got home. Then he had a muscle biopsy which confirmed the diagnosis.
He has Inclusion Body Myositis, a slowly progressive degenerative muscle disease. It’s a bummer but could be worse. There’s no known treatment except for being active. He’s slowly losing strength in his quads and some function in his feet and ankles. Going up stairs is a drag. For a banjo player, the worst is losing strength in his fingers. The best way to slow it down is to be active and keep exercising. But it is not ALS, which is what I feared.
Jamie was determined to finish the Camino and he did. My vigilance of watching his feet, planning ahead, and first class worrying affected me, so that I didn’t talk about my experience much Being support person, trying not to hover, feeling my love for him became my experience.
We are adapting to our reality but it’s manageable. We are both doing well. We feel blessed to have our community of friends and family.
It’s reminded me of how important self care is, especially for caretakers.
I wanted to experience the Camino again without that worry. My self-care is to walk it again and I’m starting now. As I write this, I’m in Porto, Portugal, ready to start tomorrow. I hope to learn some lessons for myself. I hope to write at least once while walking.
I have some links below that are reminders about caring for ourselves. For instance, you can benefit from a short 20 second self compassion exercise, especially if you make it a daily habit. As much as from longer meditation.
Using your hands to write, knit, garden, and cook is good for your brain and promotes mindfulness.
Don’t forget to care for your neck. The first one being put down that phone -at least for a while.
And remember touch is helpful for grumpy kids and grumpy people in general.
Jamie, not surprisingly has taken up a new hobby- wood engraving and you can see in the photo his first project- a green stamp/sticker for my Camino and to honor my 70th birthday. So cool!
And finally, my caveat is that this is my experience and my opinions, which are subject to change as more information is available. Thanks for reading.
Share this post if you know of others who may be interested. All links are listed at the bottom of this post. The New York Times articles have links that are gift links, allowing you to read the article for free.
https://www.seattletimes.com/nation-world/a-trick-to-reduce-stress-spend-20-seconds-a-day-doing-this/
https://www.nytimes.com/2024/03/28/well/mind/hands-mindfulness-typing-writing.html
https://www.nytimes.com/2023/11/21/well/move/neck-pain-prevention.html
https://www.nytimes.com/2023/11/02/well/mind/anger-benefit-motivation-goals.html
https://www.npr.org/sections/goatsandsoda/2023/11/12/1206275300/calm-down-grumpy-upset-kids-with-parental-massage
Big HUGS to you and Jamie!!
My niece and her 14 year old daughter walked the Camino in Spain last summer. So, I’ve not done it but vicariously through their daily postings and pictures. I’ll be thinking of you. Hope to see you both this summer during “fiddle season”. Be safe!