This illness requires one to have an enormous and ceaseless amount of patience.
Late this past summer, I had a brief period where my CFS (though still obviously extremely severe) seemed relatively stable. My cognition was slightly better and I could spend a bit more time online -- allowing me to start a blog and (very slowly and with help) create a short video testimony for the CFSAC meeting in October. I still had to be careful, of course, but as long as I stayed within my "energy envelope," I did not have any major setbacks.
However, towards the end of September, I had a significant downfall following a series of tiny slips that apparently fell beyond that invisible line of overdoing. Three months later, I still have not been able to bounce back. Every time I think there's hope that the crash is slightly lifting, it comes back full force again. Needless to say, my health has been quite poor of late.
So, for that reason, I may not update my blog for quite some time in an effort to enforce rest upon myself. How long this will be I don't yet know. I am confident I will be back at some point, though, and hopefully sooner than expected.
However, before I briefly disappear, I do have some test results to share. I debated for a bit on whether to post about this, but my point in starting this blog was to help raise awareness, and I feel like I'd be holding back on something important if I did not include this news. So.... I recently found out I am positive for active infection (DNA PCR and culture) with XMRV.
There are a mix of emotions with this news. I've been positive for many things at various times since becoming ill -- HHV6, EBV, CMV, Lyme disease, RNase L dysregulation, low NK cell activity and so on. But this felt different. I suppose because this IS different. It is a newly discovered human retrovirus whose implications are not yet fully known, and a virus that has apparently embedded itself into my very DNA. And yet, to be honest, a large part of me is relieved. I think I'd have been far more disappointed had I found out I was negative. At least this way I feel I have an answer; it is a missing piece of the puzzle, and perhaps the biggest piece at that. Most importantly, it gives me a sense of renewed hope. Hope for treatment, hope for better understanding and, maybe even someday sooner than any of us anticipated, hope for a cure.
In the meantime, in the spirit of the holidays, I thought I'd share a photo of me taken 13 years ago on Christmas Eve 1996, exactly one week before I fell suddenly ill. Despite it being the anniversary of my illness onset, this new year brings with it renewed optimism. May 2010 bring each of us ever closer to better health and the fulfillment of our dreams.
Best wishes to all for a happy holiday season!