May 25th, 2016 ‪#‎MEAction‬ is global day of action for ME/CFS patients, advocates, caregivers, and allies who will join together to protest of the lack of government funding for research, clinical trials and medical/public education, leaving  patients without relief. Protests are happening in: Washington, DC | London | Belfast | Atlanta | Boston | Dallas | Philadelphia | Raleigh | San Francisco | Seattle | Melbourne | Ottawa (virtual)

Most of us can only attend virtually.

So why a pair of hiking boots on my profile? I never got the chance to wear these down. It was I who was worn down. These shoes represent the healthy me. The me that I was before ME/CFS  came in and ravaged my body. The me that I have lost to this illness. When I wore these shoes, I could push my body in exercise and it felt good even if it was hard. Then, hiking and yoga were physically beneficial rather than stressing my body to the point of dangerous consequences as it does now. I could tell my muscle to do something and it would obey me. I had a surety of foot that cannot exist with my present neuro-immune illness which affects every system and includes debilitating symptoms, like cognitive dysfunction, problems with short-term memory, concentration, clumsiness, disequilibrium, severe and constant pain.  I miss that me that wore the hiking shoes with excitement, socialized with ease, read history and science books with pleasure while delving into beloved novels with joy, painted with abandon, listened to TED talks and understood. I miss what that body and mind could do.

The grief and fear when you start to lose physical and mental function never gets easier. Over and over, I’ve lost the freedom to create, take painting lessons, to be actively social, to get lost in movies and books, to mentally and physically engage. You never know what might become permanent. You adapt, becoming comfortable with a new normal — most people with disabilities do — but then the recovery/relapse cycle starts all over again.

Adding insult to injury, there always seems to be social pressure to spontaneously recover, or at least to stop behaving like an ill person. Compassion fatigue sets in, which is understandable but devastating. Lack of awareness around ME/CFS, and an outward appearance of health, can result in serious misconceptions about what our lives entail. The lack of community, empathy and acknowledgement of the real nature of this disease can be just as demoralizing as the symptoms.

Our lives would be infinitely better if this illness received the research funds to adequately perform quality biomedical research. Please sign the petition asking the NIH to fund research for ME/CFS: https://www.change.org/p/increase-funding-so-we-can-find-a-cure  Please ask others to do the same.

Thank you all for reading this, your support and caring.

#MillionsMissing