I am a 37-year-old woman named Alexis who has had ME/CFS (aka myalgic encephalomyelitis or chronic fatigue syndrome) since 2002.As I have not written about my health in many months, several people have kindly asked for an update. The short sweet answer is that I am better, overall, than I was last spring. But there have been many setbacks, small and large, so many ups and downs and starts and stops that it is difficult to write about my progress, to sum it up, in a personal email or on the blog.
For the hyperacusis (severe sound sensitivity) that began last March, I have been working with an audiologist since June 30th, using a program called Tinnitus Retraining Therapy. Recovering from hyperacusis takes time and includes, in my experience, thrilling highs and painful setbacks. Even though I am making progress and can now tolerate most of the sounds of daily life in my home, the extent of my ability to tolerate voices and to speak changes regularly, sometimes daily. But I have been told I will be cured and when that happens, I will write about it.
Both my energy and eyes have seen improvement. In fact, by mid-January, remarkably and wonderfully timed to coincide with the birth of my nephew, I could briefly look at printed-out photos, one or two per day, for the first time since 2010. An eye crash relapse a week or two later, the first in almost a year, reminded me that my situation remains uncertain.
Even so, I am moving forward. Because of the experiences of the past year, I know more about what is wrong with my body than ever before. Because of the tireless work of determined doctors and researchers over the past few years, there are more treatment options for ME/CFS than ever before. It is 2012, I have been sick for ten years now and I am more optimistic than ever.
Please note that all posts are still typed, proofread, linked and published by my mom, dad and/or Mike.
