Keeping my eye on the finish line as my EDS fatigue ramps up
Spring can be an exhausting season for this columnist and teacher
After my alarm went off on a recent morning, I rocketed out of bed when I realized I’d hit snooze so many times that it was more than 30 minutes past when I was supposed to be up. Racing to catch up and get out the door is never a good way to start the day, but after frantically running through my morning farm chores, I managed to make it to work only a few minutes late. Thankfully, I didn’t have anything scheduled first thing that morning.
I’m exhausted. It’s that time of year when school feels like a marathon for us teachers, and more hours of daylight and better weather mean more time outside on my farm. The consequence is less sleep. I always end up going to bed significantly later in the spring than in the winter, and with my chronic fatigue from Ehlers-Danlos syndrome (EDS), the lack of rest definitely starts to catch up with me.
I’ve probably said it a thousand times, but if I could get rid of only one EDS symptom, it would be chronic fatigue. I already sleep more than most adults do (between eight and nine hours most nights), yet I’m still tired on a regular basis. And while it may sound bizarre, being tired is tiring in itself.
I’m one of those people who has to set multiple alarms and could probably win an Olympic medal in hitting the snooze button. To be fair, there are certainly plenty of people who struggle to get up each morning and are “snoozers” like me, but I suspect that my EDS plays a role in making my fatigue more significant.
I think it’s easier to go to bed early in the winter because it gets dark so early. I’m not going to do extraneous farm chores when it’s dark and cold outside, so I head indoors earlier in the winter. Once daylight saving time starts, though, and it stays light until much later, my bedtime seems to get pushed back, even though I don’t feel like I’m doing that much more in the evenings.
The result is that I end up exhausted right when things ramp up. School gets extra busy as everyone hurries to squeeze in as much as possible before summer break, and I help high school seniors finalize their plans for after graduation. During the season when I could most use a nap, I have the least time for one!
The other tough part is that fatigue can make me feel extra sore, and that pain can make me even more tired. That can easily spiral into a full-on pain flare if I don’t manage it carefully. Spending extra time on my heating pad, taking ibuprofen when needed, and trying to get things done without pushing myself too hard all make for a delicate balance — and I don’t always do it successfully.
Like always, life with EDS is a balancing act. I know that things will eventually settle down, I’ll catch up on my sleep, and all will be well. Sometimes I just have to keep my eye on the finish line of the school year. Life will slow back down soon enough.
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.
About the Author
Belva G Baxter
Karen Del Vecchio , our mitochondria is where our energy is produced. Our skin is also where our illness is most pronounced. Our collagen is miss shaped and doesn’t perform properly. I was diagnosed last August. The Dr has 3 degrees, pediatrician, internal medicine, functional medicine. She prescribed me a bunch of supplements. But the one that has been helpful with energy is by Researched nutritionals ATP 360.
They have sense come out with ATP Fuel. For Me the Fuel can not replace the ATP 360 but it does help to make the energy more sustainable. I take 3 ATP 360 in the Am and 3 of the ATP fuel a little later. I tried it how the instructions state on the bottle. But that was not as helpful for me. I need to write the company . I do not work for this company nor own stock. But I had got to the point where all I could do was sit on the sofa snd sleep and nap 3-4 days a week some days with 2 naps a day. I am still not healed or well. But I am better and am now back to cooking and a more normal life. I hope you find more energy.
Sincerely B Gaye Baxter
Elizabeth Kays
It was reassuring to see your story, though I’m sad for you. When do you know that fatigue becomes something else? My son can sleep 20 hours a day for 5 days at a time; in fact it’s a pattern established over a year or more. He is disabled from hEDS, but I am looking for any other causes.
Jodi Lynne Ierien
I used to teach school as well. You are definitely right about this time of year. I was exhausted all spring. I now work as an insurance adjuster. I’m still tired in the spring but it’s not as bad. I substitute in various handbell choirs and this is a busy time of year for us. Fortunately, most groups take the summer off so it makes it easier to pace myself. Hug your horses for me!