A Decade of Living with ME/CFS
Finding Hope & Purpose in Japan
During OMF’s May Momentum campaign, we aim to raise awareness for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
Today, we share the story of Dave Olson, an OMF supporter in Japan. Dave’s experience highlights not only the challenges faced by those with ME/CFS, but also the resilience and strength of our community.
Hi, I’m Dave, and I’ve been living with ME/CFS for 10 years now. Before my diagnosis, I was an enthusiastic and active individual, working as the Vice President of an exciting social media-related company in Vancouver, Canada. I had a plethora of hobbies, from hockey to hiking to public speaking. However, my life took an unexpected turn when I suddenly fell ill in May 2013, leading to a decade-long journey with ME/CFS.
I went from feeling “a little bit sick” to having an out-of-body experience passed out on the floor. I thought maybe it was a gastrointestinal issue or stress from work, but I just didn’t get better.
I really realized something was wrong when my brain started to “check out” and I was getting lost and disoriented just blocks from my house despite being a world traveler. It turned out that I was ill with ME/CFS.
Now, ten years later – after hundreds of medical appointments, tracking down specialists and programs of every possible kind, I’ve lost everything from my career, to my support system, self-worth, and hobbies.
Rebuilding my Life Across the World
Despite all the loss I have suffered over the past decade, I’ve managed to rebuild my life in Japan with my wonderful wife and adorable 2-1/2-year-old son.
I recently started a specialized ME/CFS medical program at Okayama University research hospital, which has given me hope for a brighter future.
Throughout this journey, I’ve turned “optimizing the household” into my hobby, finding ways to streamline daily tasks while conserving my limited energy. I also enjoy creating and sharing art, writing postcards, and blogging about my experiences at daveostory.com.
Navigating life with ME/CFS in Japan has had its challenges. It took some time to find the right medical resources, but I’ve made significant progress with the attentive care of doctors at the Okayama University research hospital. While there is a growing recognition of ME/CFS in Japan, I hope that sharing my story will encourage more understanding and foster better communication.
Words of Wisdom: How to Find Creative Expression with ME/CFS
Blogging has played a significant role in my life with ME/CFS. I’ve been able to share my experiences, art, and insights through my blog, connecting with others and reminding myself that I’m still alive and relevant.
For example, in my spare time, I take great pleasure in writing postcards. This hobby not only fuels my creativity and hones my motor skills, but also provides “three waves of joy”. The first wave of happiness comes from the process of preparing and sending the card. The second surge follows when the recipient gets the card. The third thrill arrives when I receive a response!
An example of Dave’s postcard art
For anyone with ME/CFS who wants to pursue their passions through art or any form of personal expression, I suggest starting small. Instead of working on large canvases, murals, or novels, consider decorating postcards, writing poems (even haiku) or creating scrapbooks or collages.
When you’re resting, plan your creations so you can use your limited energy on the actual creative process rather than deciding what to make. Focus on projects that can be completed quickly, from beginning to end, and are easy to share by mail, remote exhibitions, or as gifts. I’ve published poems and submitted art to exhibits all from my bed and have given my art to medical practitioners to show my gratitude.
Additionally, consider learning a new skill that can be done easily on a table or lap, allowing you to connect with others.
A Note to the Newly Diagnosed
For those newly diagnosed with ME/CFS, be prepared to face challenges and losses, including friends, family, career, and even dreams. Despite it all, remember that no matter what, you are important and your perspective on the world is so valuable.
We are pioneers on a journey we didn’t choose. Take the advice of a counselor who deals with chronic and complex illnesses: “Go where the current takes you.“ If needed, find a counselor who understands your situation, as friends and family may not have the practical skills or emotional ability to provide adequate support.
Finding Hope in Open Medicine Foundation
Remember that there are also people who are working around the clock to help us and find a cure. I first heard about Open Medicine Foundation (OMF) during my search for a community that focused on scientific information, research, and practical solutions for ME/CFS. OMF’s transparent and thoughtful approach to fundraising and communication resonated with me, and I am grateful for their dedication to finding a cure for this debilitating condition.
As I reflect on my 10-year journey with ME/CFS, I’m filled with gratitude for the support I’ve received and hope for the future. To all the scientists, researchers, fundraisers, community organizers, patient advocates, and individuals who contribute to this cause, I raise a cup of Tulsi tea to you.
With fond regards from my cottage in Okayama, Japan,
During May Momentum, please consider making a generous donation in honor of Dave and the millions like him who are waiting for answers. Our research momentum is powered by you. Thank you for your generosity and for standing with us in our mission to end ME/CFS.
With your support, we can move closer to a world where this illness no longer holds people back from living their best lives.
Open Medicine Foundation also accepts gifts of stock, cryptocurrency, real estate and retirement assets. Learn more today.