How I manage the fatigue that comes with Ehlers-Danlos syndrome

I’ve often said that chronic fatigue is the toughest part of having Ehlers-Danlos syndrome. It’s exhausting being tired all the time!

As a high school teacher and post-graduate counselor, this time of year is especially draining, as it’s full speed ahead to the finish line of graduation. Although my life is incredibly busy, I’m running out of steam.

Lately, my days have been long and nonstop. Some of that is my own doing, as I keep a busy schedule full of work, horses, and animal care, but I wouldn’t change it for anything. Farm work is basically a form of physical and emotional therapy for me, and while it makes my days longer, it also makes them infinitely better. But at this time of year, when long days at work are followed by extra seasonal chores at home on the farm, I’m so tired at night that I fall asleep almost instantly.

I do my best to power through; if I stop, it’s hard to get started again. After I get home and finish taking care of the horses, I go inside to eat dinner and take care of the dogs and cats. I finish whatever chores I need to for the next day, and then it’s a quick shower and off to bed. I’ve learned that if I sit down, I won’t want to get back up, and if I sit on the couch to relax before bed, I’ll just fall asleep.

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The other piece of the puzzle is that when I’m this tired, I’ll fall asleep and not move at all until my alarm goes off. That’s not good. Lying in the same position for seven to eight hours is a recipe for waking up incredibly stiff and sore. When that happens, the following dos and don’ts help me get going again:

1. I don’t rush to get up and out of bed. I take a few moments to stretch, roll over, and let my muscles relax in a different position from the one I slept in.
2. However, I also make sure that I don’t lie around for too long. While I don’t want to rush it, I have to get up and moving.
3. I have to be careful on the stairs until I work the kinks out. When I’m super stiff, stairs are very difficult on my hips and knees. Sometimes I have to take them one at a time until I’ve loosened up.
4. I have to remember to be patient. I’m the opposite of patient in most respects, but I have to let myself get rolling. Getting frustrated doesn’t help me get there any faster.

Sometimes a night like this can set off a pain flare, but other times I get lucky and just have a sore or slow day. Unfortunately, there’s not much I can do to prevent this from happening. Once I’m asleep, I can’t control whether I move around or not. All I can do is try to get as much sleep as possible during the week, aim for a little extra on the weekend, and be patient with myself in the mornings. Pretty soon, I’ll have some time off for the summer so I can recharge!

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 another 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, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.