Friday, October 9, 2009

More About XMRV and CFS

This article at was so helpful in helping me sort through some of the rumors and "backstory" I've heard over the year about Chronic Fatigue Syndrome research, the CDC and various CFS organizations. It highlights what a huge breakthrough this is and why. I might not agree with all of the author's word choices, but her overall message really resounded with me.

I woke up yesterday morning with blurry vision (something I've been struggling with, but much more intense than normal) and in so much pain that I could hardly move without tears, couldn't let my kids even touch me (and we normally are big snugglers in the morning). It took a full hour and a half after pain meds before I could move enough to even get out of bed, then I was still in a lot of pain all day long. My dad had to drive the kids and I to their homeschool co-op and I had to use my big wheel chair that I haven't broken out in months (usually I use the smaller "transport chair" even though we refer it it as a "wheel chair" too). Don't know if this was finally the backlash from my trip, or still recovering from the scary reaction I had after Sunday's IV, or "just becuase".

I'm still hurting more than normal today, but significantly less than yesterday and my brain seems to be less foggy than it was when I was grasping for words and concepts continually yesterday. My vision is better again today, but this reminds me that I really need to get in for another eye exam, though I really have the feeling glasses aren't going to be the whole fix here and that I'm overdue for another MRI and brain spec scan.

Emotionally I'm on a "high" with the news of this research breakthrough, but that caused me to stay up til after 9:30 reading all over the internet, so I'm paying for my late night now and hope I don't have an additional "crash" as the adrenaline from the excitement begins to wear down. But how could I be anything but excited about such amazing and potentially life-changing news!

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