#MillionsMissing

Why the hiking shoes you ask.

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May 25th, 2016 is dedicated to the millions of Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. ‪#‎MillionsMissing‬ and I am one.

#MillionsMissing is a day of global protest to raise awareness of ME/CFS and the impact it has on patients and their family. It’s about the millions missing from their schools and careers because of this illness. The millions missing from their families, friends and social lives. The millions missing from the lives they want to lead. The millions missing from research and development of effective treatments and cures, the doctors and health care professionals missing out on proper training to diagnose and help patients manage this illness.

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 lose 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

 

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4 Responses to #MillionsMissing

  1. I don’t know how to comment on this because I want to say lots of things and don’t know what any of them are. But I’m definitely sending you support and caring and all of those things.

    Lucy (also missing).

    Like

  2. paige says:

    Aaahhh Nancy, I hope someday there will come some comfort for you. A cure would be nice. I would love to see you wear those shoes again and go hiking with me:)) So much love your way, your ionic sister

    Like

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