Myalgic Encephalomyelitis puts the Chronic in Chronic Fatigue Syndrome

In our family, there are no truer words than, music is food for the soul. Growing up, I would fall asleep at night listening to my mother playing her piano. It was soothing. Anytime I am happy, sad, or feeling indifferent, music is a close companion, so it comes as no surprise that both my children feel the same way. Especially when it comes to live music.

Green Day, Weezer, and Fallout Boy. They were all Jayde could talk about for weeks. Brett's mom bought tickets for Jayde, Brett, and his sister Greta to attend the concert at Hershey Park. I spent a few days ensuring Jayde had all the necessary supplies, from extra clothes and medications to plenty of frozen bottles of water and Gatorade and snacks in the cooler. She spent the week leading up to the show resting. Saving her spoons for the big day. I gave her a mani/pedi the night before and washed her hair. The plan was for Brett to drive my car so they could easily take Jayde's wheelchair, and she could lay in the back if necessary. All of us hoped she could feel "normal" for a few hours. As the text came in telling me the kids were returning home early because Jayde was sick, I was sad knowing none of our preparations mattered. As I sat with her, rubbing her back, trying to provide comfort, she whispers, "I am so sorry." I wrap my arm around her, "You have nothing to apologize for." She begins sobbing, "Yes, I do. You should be in bed, not stuck up all night with me. I knew I should have stayed home."

Five days later, Jayde still has not begun to recover from an event the average person takes for granted. She has bounced from her bed to mine. She hasn't had the energy to talk much, but this morning, she rhetorically asked me, "What if that was my last concert?" I didn't have the heart to answer truthfully, so instead, I gave a half smile and continued running my fingers through her hair as Fleetwood Mac softly played in the background. It's as much for me as her.

You know how when you have the flu, you feel like you've been hit by a train, but you recover in a few days, and your illness becomes a distant memory? Now, imagine you don't recover, and you are constantly fatigued and constantly in pain. That is Myalgic Encephalomyelitis/chronic fatigue syndrome. It is an extreme state of fatigue that worsens with activities but doesn't improve with rest or sleep. It also seems to make Jayde's POTS worsen, and she tends to have more syncope and presyncope episodes. Something as simple as showering or going with me to the grocery store triggers a flare, and we are back to square one. 

It has been ten months since Jayde was formally diagnosed with ME/CFS. As with most of Jayde's illnesses, there is no rhyme or reason when it comes to this illness. It seems that the more her health changes, the only thing that stays the same is the music playing on as we hope for tomorrow to be a better day than today.