Setting goals for EDS management this summer

Rest and rejuvenation are on tap for this columnist

Karen Del Vecchio avatar

by Karen Del Vecchio |

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Summer means I have a break from teaching, which is great for rejuvenating myself for the next school year. But it’s also easy for me to do too much because I have more free time. That must mean I can do more, right? Wrong.

To avoid taking on too much this summer, balance my free time, and manage my Ehlers-Danlos syndrome (EDS), I’ve set the following goals:

Remember to take a rest day. I’m not good at relaxing; I’d rather be doing something. But sometimes it’s important to have some downtime to let my mind and body relax and recover. I have to remind myself that it’s fine to dedicate a day here and there to chilling out in the air conditioning with the cats and dogs.

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Be aware of the heat. I dislike the summer heat. Working in it causes me to struggle with chronic fatigue later in the day, so it’s important for me to remember to take a rest day when needed.

Take an emotional timeout. I’m usually working, so it’s crucial that I also schedule fun time. Meeting up with friends for coffee, going shopping, or visiting with family are ways that I recharge. I need to prioritize these things during the summer, as I usually don’t have time for them during the school year.

Try new recipes. I enjoy cooking, which is a great way for me to unwind. Because of EDS and alpha-gal syndrome, I rarely eat out, but sometimes I get stuck in a rut using the same old recipes. When it’s hot, I often don’t want to eat much, but I need to be careful about getting enough protein. I’ve found that not eating enough protein, which can be difficult because of my dietary restrictions, worsens my fatigue.

This summer, I want to try some new recipes to bring some spice back to my life.

I’ll try my best to keep these ideas in mind this summer so that I can have fun, relax, and hopefully get things done as well, with only minimal interference from my EDS.

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.


Jennifer L Martin avatar

Jennifer L Martin

What are your dietary limitations due to the EDS? I have a lot of dietary limitations because of my allergies. Does EDS make you more sensitive to additives like preservatives and artificial colors?

Karen Del Vecchio avatar

Karen Del Vecchio

I've always had issues with anything too rich, fatty, or fried. For example I could never have chicken tenders AND fries, only one or the other, without getting a terribly upset stomach. The same for any kind of baked good or meal rich with creams, fats, or oils, as they have always seemed to bother me. I haven't noticed anything relating to preservatives or colors, but most of those are also now out of my diet anyway due to my additional food limitations from also having alpha-gal syndrome.

Jane Smith avatar

Jane Smith

Have any articles for someone 80?


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