Arthritis Life
What do you do when you hit rock bottom from chronic pain? Mindfulness, Acceptance and more with James Allen
Episode Summary
James Allen shares his experience hitting rock bottom from ankylosing spondylitis pain, and how mindfulness and acceptance brought him back to a fulfilling life.
Episode Notes
James and Cheryl discuss in detail how they manage fluctuating symptoms and pain from chronic rheumatic diseases. James also explains how his patient journey led him to create his innovative 3-D symptom tracker app, Chronic Insights.
Speaker bios:
James Allen is 39, and has lived with ankylosing spondylitis (AS) for 22 years. He likes to think of arthritis as a clumsy housemate who moved in without permission, who he used to hate but over the years he’s grown to kind of like. It forced him to leave his job as an IT consultant, which in retrospect has been a positive development, because now he’s doing something he really loves - developing a symptom diary app called Chronic Insights.
Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
Episode links:
Medical disclaimer: All content found on the Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.
Here's the show breakdown:
- 02:30 - James shares his relationship to his Ankylosing Spondylitis (AS), it’s like someone who moves into your house who at first you try to make go away, then you make peace with it.
- 05:30- Cheryl and James discuss how metaphors and Acceptance and Commitment Therapy (ACT) help them cope with chronic illness.
- 10:00 - James’ journey getting his initial diagnosis of Ankylosing Spondylitis quickly due to his dad’s help.
- 12:20 - James’ journey managing his AS; initially it was pushed to the back of his mind, then it gradually worsened over time and he sought therapy to help with the struggle.
- 17:10 - Cheryl and James’ important lessons/insights about the importance of communicating your pain levels to your providers. How hard it can be to admit you are in a lot of pain.
- 19:40 - James’ switch to his first biologic, Humira and how it changed his life for the better.
- 21:00 - Cheryl and James discuss the phenomenon that many patients are scared of medications, and how the risk / benefit analysis is different for each patient.
- 23:50 - James enjoys activities like running a half marathon while his medication worked. Then, experiences his medication wearing off after years of success, which was a massive blow mentally.
- 25:50 - James starting over with medications, trying different biologics. He experiences progressive deterioration of his health which negatively affects his work life.
- 30:50 - James’ condition progresses to where he has difficulty getting out of bed and his partner has to help him with daily living tasks. He hits rock bottom.
- 32:50 - James comes across meditation and mindfulness, leading to breakthroughs in his ability to manage and cope with pain. He learns to be curious about his pain and develops the ability to observe himself and empathize with his experiencing pain, and eventually accept it.
- 36:50 - Cheryl explains the importance of the developing mental tools to cope with the uncertainties that come with chronic pain and chronic illness.
- 39:50 - James discovers slow and gentle somatic exercise, which helps him relax and relieves joint stiffness and tension.
- 41:50 - The benefits of the reclined exercise bike and a sit/standing desk for James’ back and hip pain.
- 43:50 - How James sometimes allows himself to have a “bad day” and wallow to help his mental wellbeing.
- 46:50 - Cheryl dives into acceptance and commitment therapy.
- 48:50 - James’ challenges with difficulty rating his pain on a scale of 1-10, and why that inspired him to create an app for tracking symptoms.
- 51:20 - Cheryl and James explain the difficulties of rating pain.
- 53:00 – James elaborating on how he developed his symptom diary app, Chronic Insights, which allows you to draw your symptoms onto an interactive 3-D model.
- 57:00 - James’ shares the impact of having a visual representation of your pain (via his app), and shares the feedback from others who’ve been using the app.
- 1:04:00 - Where you can find James