My chronic fatigue is getting worse. I know it’s not only part of the Ehlers-Danlos Syndrome, but part of the idiopathic edema I have as well.
I had what most people would consider near a full night’s sleep, yet I just work up from a nap. I couldn’t stay awake.
It’s so frustrating, guys. One of the reasons I’m doing this post is to spread awareness. People get frustrated with me for always sleeping, telling me I should have more sleep, less sleep, normal bedtimes, should just get up, should just do it, should run around the block … and the list goes on and on.
I try. Y’know? I try so hard. But nothing works.
I can’t help it. I do the best I can. I set my alarm really loud so I get up. I try to interact instead of sleep. But I’m always tired. I could fall asleep anywhere, that’s how exhausted I always am. I’ve crashed on the kitchen chairs. I’ve slept curled up in my small window seat in my room. I sleep upside-down in my bed, desperate not to sink into sleep too deep, but no longer able to fight off the ache for rest.
(I find this adorable and hilarious).
Please, guys. If you know someone struggling with chronic fatigue, please be understanding. We need a cure, but until then, it’s really hard to live our lives without the support of those around us. And please pray that we have the strength to carry on.