I traveled to Reno last weekend. Without a caregiver. Twelve hour day Monday. Fifteen hour day Tuesday. Lots of standing. Walking. Meeting my heroes. Got stuck at the Dallas airport for many hours on Wednesday. Walked miles because they kept moving the gate. Reasonably active days since. No significant crash. Astonishing!
A year ago, I existed from the bed to the couch. When I started HAART, I could be up for short periods, fifteen to thirty minutes at a time. I could go to town now and then, but it was an enormous struggle. I could push it for something important, but it would level me for significant periods of time. My pattern then was a sine wave, roughly five days above water, five days below.
I just functioned for several consecutive days at a level that would have been taxing even before I got sick. With very little payback. I’m still having dips, but they are brief, measured in minutes and hours, not days, and don’t go to helplessness.
My daughter is also doing extremely well, but I’m afraid to jinx it by saying too much:). Suffice it to say, that she proves that I am not the only one. We are both deeply grateful for all of the good wishes we have received.
Reno was a once in a lifetime experience for me. It was my first time away in over five years that didn’t involve seeing doctors for treatment. That alone made it a personal miracle. The WPI has accomplished so much in such a short time. David to the Goliath of ignorance and disbelief we’ve faced for decades living with this diabolical disease. The spirit of interdisciplinary sharing that they are encouraging from inception signals a new era for patients. They are changing the playing field for us completely. Each alone and unrepresented no longer. Uncared for no longer.
Please visit this wonderful coverage of the event and photos of the facility: CFS Patient Advocate blog
At this point, I still do not see a better course of action on the horizon for the sickest X+ patients than the protocol we are following. We are only two patients, but talk to any experienced CFS or Lyme doctor and they will tell you how unlikely a return to function is for patients as far down the road as we were. We are both progressing steadily towards that goal. It seems tangibly within reach as I write this.
Clinical trials are essential. It is an outrage that we are getting better while a staggering number of people languish in isolation without meaningful treatment. Our antiretroviral trial to date is tremendously encouraging and urgently needs formal follow-up.