When I uploaded my Crash Day 3 video on Monday, I was scared. In fact, I almost didn’t do it. I can’t control the fact that I have crashes, but I can control who sees me that way. Like most people, I withdraw when I feel lousy. The suffering that comes with the worst days of ME/CFS is not something that I have ever wanted to display in public. I originally recorded the video in order to submit it to the FDA comment docket. But after I did that, I thought maybe it was worth sharing with you because it might be similar to what other patients experience. I felt very vulnerable putting it out there, but it seemed like the right thing to do.
Wow. Just . . . Wow! Your response has been incredible, and far greater than I anticipated. The video has 893 views on YouTube as of today. There were 388 hits on the blog on Monday, rising to over 1,000 hits yesterday. You’ve been sharing it on Facebook, on the forums, on Co-Cure, on Twitter, and your own blogs. And your comments – here on the blog and on Facebook and by email – have been overwhelming in kindness and support.
I thank you from the bottom of my heart. It felt like I was taking a big risk, but you caught me when I took that leap of faith. You reminded me I am not alone, and you used my video to help teach others about this disease. Not only do I feel supported, but we’ve turned this crash into something meaningful and productive! So keep sharing the video and keep the conversation going. And please know that you have my deepest gratitude for the love and support you have given me this week.