One of the great things about working at a school is the time I get off. As someone with Ehlers-Danlos syndrome (EDS), chronic fatigue is my nemesis. I’m always tired. I usually aim to get eight or nine hours of sleep a night, but I still wake up tired. I’ve written before about how each time I come back to work from a break, I feel fatigued all over again.
I think that chronic fatigue is the toughest part of dealing with EDS. Those of us who deal with chronic pain learn to manage it as best we can. We find activities and therapies that help, and I know that at times I disassociate from my pain. (That’s a whole other column!) But I can’t ignore being exhausted.
I was never a caffeine person until I was about 24. I can’t drink soda (Karen + carbonation = disaster), and I didn’t have a taste for coffee. I don’t know how someone who was exhausted all the time never found caffeine, but I didn’t. It wasn’t until I started working full time on a farm that coffee became my morning lifeline.
Regardless, fatigue seems to be an almost daily battle. It’s not necessarily the “I’m going to fall asleep at my desk” type, but it’s always in the background. Getting up in the morning is an ordeal. It involves three alarms, one of which is out of reach so I can’t turn it off unless I actually get out of my bed. Hitting the snooze button is usually a 45-minute endeavor, and most days I just have to get vertical, because moving is the best antidote to fatigue.
Don’t get me wrong, I don’t do myself many favors. Although I make a concerted effort to get to bed at a reasonable hour, I don’t change my daily activity level based on my fatigue. Being tired as a side effect of my EDS won’t keep me from living my life. It could be argued that my attitude makes fatigue worse, but that’s the way I’ve learned to handle it.
It boils down to a choice, and I’d rather be tired and happily engaged in the activities that I enjoy than less tired and less active. And I stand by that, as long as I don’t reach the overtired point. Anyone who knows me well can tell you that’s never good. Life’s problems, no matter how small, look insurmountable to me when I’m overtired.
Managing EDS is about finding balance, and sometimes that means making compromises, whether we want to or not.
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.