Humans of ME/CFS
My name is Ron. I’m a professional cellist, conductor, and recording artist and I have ME/CFS.
In 1980, I had a bad episode of pneumonia which left me bed ridden and continuously fatigued long after the infection was gone. Night after night, I would awaken totally exhausted in a pool of sweat. My doctor could see the pneumonia was gone, but had no idea why I couldn’t get my strength back. He recommend an acupuncturist who I started seeing twice a week to work on my energy and stamina. With his help, along with a very loving and devoted wife, I was able to start auditioning again and actually pulled it together to successfully get into a major orchestra.
The schedule was extremely taxing and I was often fatigued but maintained with the help of lots of supplements for immunity and energy, a good diet, and a long nap every day. I was finally officially diagnosed with ME/CFS in1998 just around the time I expanded into my work as a recording artist and conductor. I’ve always been an overachiever and possess a very strong will and determination which has helped me get through even the worst of times with this illness. My mantra eventually became (addressing this disease) “you’re not going to stop me!”
I can’t say I haven’t suffered all these years and still do with the ongoing archetypal symptoms of insomnia, brain-fog, memory loss, swollen glands, sore throat, sinusitis, excessive fatigue and pain particularly abdominally. I’ve taken just about every blood test there is, MRIs, CATs, sleep analysis studies and on and on and not surprisingly, the present medical establishment has never found anything. The doctors I continue to see still to this day show skepticism about how these intense, ongoing symptoms could be caused by this misunderstood thing called ME/CFS.
I’m truly what you would call a high functioning person with this condition and unlike so many of the wonderful people who have offered their testimonials here and have this disease in its most extreme manifestation, I’ve gratefully been able to have a family with children and pursue a career as a musician, but not without much difficulty and challenge. After I reached retirement age a few years ago, I decided to move on from orchestral playing and conducting as well as a lot of recording but I still perform in a limited amount.
For me, there actually have been some blessings having this disease. It taught me to only do what I love, try to always simplify, and most importantly, I had the profound realization that I’m not just this body. I’m in my body but there’s something immensely powerful and uplifting within me that I learned to access through an experience and knowledge taught by meditation. This practice has become my foundation to help me survive and thrive living with this horrible disease.