#GoBlueForMECFS
I am Sammy Lincroft and I am one of Millions Missing with Myalgic Encephalomyelitis.
Today is world ME day 2023 and I am sharing my story to raise awareness of this horrific illness.
I am a passionate, creative, intelligent, and courageous person. In 2018, at the age of 19, I had traveled and performed globally, was a high-performing student at Wellesley College in Boston, had just picked up play bell towers and went on an incredible ski tour of New Zealand. I had an amazing community of friends and family and had truly never been happier. Little did I know that it was all about to be destroyed.
I was struck by sudden severe chronic Fatigue. No matter how much I rested I felt exhausted, muscle aching, head throbbing, as though I had a flu that would never end.
Diagnosed with depression I couldn't understand how that could explain my fatigue, chronic pain, and even periodic paralysis when I had never been in a better place in life before being hit by the bus that was MECFS.
Trying to follow doctors instructions to "get back out there" only ended in more pain and disability. Leaving me housebound and in a wheelchair.
After 2 years I was diagnosed with fibromyalgia and Behcets Disease. But my doctors still missed the most important diagnosis. Eventually I discovered ME for myself and determined to uncover if it was the answer I dreaded underwent a 2 day exercise test to find out.
The test involved biking for 15 minutes on two consecutive days. Not only did the test reveal the extent of my energy deficiencies, it showed almost a 20% reduction in capacity on the second day. Something not even heart failure patients experience.
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The test didn't even begin to capture my Post Exertional Neuroimmune Exhaustion or PENE aka the "crash" I experienced.
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Light and noise became daggers of toxic pain. I could not stand without blacking out. I couldn't talk and then could only barely. Unprepared for how ill I became I found myself peeing into towels as we rushed to order bedpans and commodes.
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That was early 2021. It is now 2023 and I remain bedbound. Plauged by constant migraine severe Pain cluster Headache. I became allergic to almost all foods at one point only able to eat plain pasta, broccoli, and boiled chicken.
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So much of my suffering could have been prevented if only my doctors had recognized the signs of ME. Had they not dismissed my paralysis and extreme fatigue and crashes as anxiety and depression.
