October, 03 2025

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Rhys J. Johnson - February 11, 2026

Thank you for writing this. You’ve articulated the ‘invisible’ part so well—it’s that exact gap between how we look and what we’re enduring that makes daily life so complex and often isolating. One of the hardest parts for me has been navigating the “energy economy” you alluded to. Every task, even a joyful one, carries a hidden cost. What looks like a simple choice (“I’ll go to the shop”) is actually a complex calculation of pacing, recovery windows, and potential trade-offs for tomorrow. It’s exhausting to constantly explain that ‘good day’ doesn’t mean ‘pain-free,’ it just means ‘manageable.’ Your point about navigating daily life resonated deeply. I’ve found that building a ‘toolkit’ of small, adaptable strategies—like micro-rests, environmental adjustments (a good chair is worth its weight in gold), and gentle movement anchors—has been more sustainable than searching for a single solution. It’s less about ‘fighting’ the pain and more about skillfully moving with and through it to reclaim slivers of life. For others reading, the most valuable thing I learned was to track more than just pain intensity. Tracking function, mood, and what gave me a sense of accomplishment—even on a high-pain day—gave me and my care team a much clearer picture than a number from 1-10 ever could. Again, thank you for this compassionate and insightful piece. It feels seen.

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