Chronic Pain is Hard to Explain 👑🐷 Pirate Radio EP 2

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Welcome back to King Kogi Pirate Radio. In this episode we’re diving deep into the reality of living with chronic pain. From navigating medical systems across the globe to the daily battle of "brain pain," we discuss why it’s so difficult to explain these experiences to others.

We also share actionable tips for building your own "Emergency Toolkit" and exploring the "Build A Ladder" mindset. Whether you're living with a chronic condition or supporting someone who is, we hope this conversation brings some vindication, comfort, and a understanding for your journey.

Please let us know if you found any part of the podcast particularly helpful by adding the timestamp to your comment so we can make create shorter sections to share easily.

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For fellow EDS folks, here is a link to @JeannieDiBonHypermobility who has helpful videos and tips https://www.youtube.com/channel/UCh3dgBm_L5pwaeBQI-Q7yVw

Podcast Chapters

00:00 - Welcome to King Kogi Pirate Radio
00:30 - Why call it a "Wellness Podcast"?
01:30 - Living with an invisible illness (hEDS)
02:10 - A partner's perspective on chronic pain
03:30 - Community stories and common threads
05:15 - Hairdresser tips: Lessons in accessibility
06:10 - Just a simple ad read
08:15 - Navigating the medical system and doctors
10:30 - "Normie" perspective vs. chronic pain reality
11:45 - The diagnostic journey Canada, Korea, and Japan
14:10 - The search for the right physiotherapist
15:30 - When medication isn't enough: The mental side of pain
19:10 - The danger of gaslighting yourself
21:15 - Taking charge of your own treatment
24:00 - The difficulty of explaining pain to others
27:00 - Why we don't need "cures"
29:00 - How to support someone in pain
31:00 - The guilt and shame of asking for help
33:30 - Managing energy and choosing your battles
34:30 - The Emergency Toolkit: Preparing for the flares
40:30 - "Push it to the limit" vs. recovery time
42:45 - The mind-body connection: Understanding "Brain Pain"
45:00 - Learning to read the warning signs
49:30 - Managing tomorrow by looking after today
53:00 - Travel planning: Preparing for the worst-case scenario
58:00 - Build A Ladder: Finding wonder in the small things
01:04:45 - Breaking the people-pleasing cycle
01:06:40 - A message to the King Kogi Village

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#chronicillness #invisibleillness #chronicpain #ehlersdanlossyndrome #chronicpainsolutions #kingkogi #buildaladder