While I nurse my body back to baseline, I’m choosing to focus on what fuels it

I'm cooking fresh meals at home rather than reaching for quick prepackaged food

Written by Lacy Rosenbaum |

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I’m welcoming October this year not from my office chair, but from my husband’s recliner, with supportive pillows tucked behind my back and neck. I’m trying to listen to my Ehlers-Danlos syndrome (EDS)-literate physical therapist and give my body the time and support it needs to heal from my latest silly move at the local feed store. If you want a good laugh — or cry, if you’re me — you can read about that little adventure in last week’s column.

Since I have my hands full nursing my body back to some sort of baseline, I can forget about intense physical exercise that involves anything more than walking for the foreseeable future, so I’ve decided my goal this month to be more intentional about what fuel I put into it.

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An illustration is shown of a woman eating an apple.

Eating challenges common among women with self-reported EDS

Don’t call it a diet

Over the past decade, while on the long journey to my trifecta of diagnoses — EDS, postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome — I was put on more dietary protocols than I care to remember. From elimination diets, low FODMAP, gluten-free, corn-free, legume-free, you name it, there’s a pretty good chance I’ve tried some version of it. They even had me, a rancher’s daughter, go vegan for a while to see if that would calm my systemic flares and gastrointestinal distress.

None of these diets were sustainable, but they did teach me a lot about my body. I learned which foods fuel me, which ones my digestive system can tolerate, and which ones make my already sluggish digestion basically throw up its hands and quit.

I don’t even like the word diet, to be honest. A diet sounds like failure in the making. You follow a bunch of strict rules for a while, life happens, the diet goes out the window, and wham! — you’re right back to square one.

Having EDS and the trifecta makes digestion interesting, to say the least. I deal with slow motility — junk foods leave me painfully bloated, and big meals can and will make my POTS symptoms worse as my body tries to divert blood flow to handle heavy digestion.

With all that said, if I make adjustments to my everyday eating habits, I like to do it in ways I can actually stick with. It’s nothing crazy or overly restrictive, just sustainable. For me, that means choosing more whole foods and less inflammatory processed food. My body already has enough on its plate just trying to hold me together.

I’m also focusing on cooking fresh meals at home rather than reaching for quick prepackaged food that’s easy and tastes good, but leaves me with horrible abdominal pain, a racing heart, and breathlessness.

Finding my balance

This doesn’t mean I’m turning down every cookie someone puts in front of me. Life is too short not to have some balance, although I now understand that simple sugars, refined carbohydrates, and heavy meals are difficult for me to digest. So I’m trying to eat smaller meals, especially at dinnertime, and to give my digestive system a 12-hour break after dinner. I also start my day with protein, whether that’s organic eggs from my backyard flock or some Greek yogurt.

I don’t want to spend the holidays stressing over every bite I put into my mouth. Been there, done that. Food is meant to fuel our bodies, but it’s OK to enjoy it, too, especially when you’re sitting around a table with the people you love.

It won’t be easy, but if mindful eating helps me achieve the good health I need to be present for my family, then it’s worth it.


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.

heather mcpherson avatar

heather mcpherson

diet has been a massive learning curve. pancreatic insufficiency is a possible issue for EDS. I can't digest concentrated protein (greek yogurt has modified milk products as do most ice creams.)I can drink milk but parmesan cheese is migraine city.lookup glutamate contents as well.(malted barley syrups are basically MSG.) you are on the right path.H.

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Lacy Rosenbaum avatar

Lacy Rosenbaum

Hi, Heather, wow, that is all new information to me. I'm sorry you're going through those food challenges. It can be so difficult these days to know which ingredients we react to because of the extensive amount of ingredients in nearly everything, but whole foods. Thank you for bringing those to my attention. I will definitely do some research into pancreatic insufficiency, etc. Best wishes through this journey! Thank you for commenting.

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Catherine Farley avatar

Catherine Farley

I just wanted to tell Lacy and other fellow EDS folks that when I started taking 200 mg supplemental magnesium glycinate daily to see if it would help with deep muscle cramps, it did, but also cured my sluggish gut. An unexpected bonus!

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Lacy Rosenbaum avatar

Lacy Rosenbaum

Hi, Catherine, thank you for the info about magnesium glycinate! My husband takes that in the evening for various reasons, but I will definitely be giving MG a try! Thank you! Best wishes on your journey! Thanks for commenting!

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