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21 Habits of People With Dysautonomia

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Dysautonomia refers to a group of disorders in which the autonomic nervous system malfunctions, causing cardiovascular problems, breathing issues or fainting. Living with a form of dysautonomia often requires constant maintenance to help stabilize your body and prevent major mishaps. Adapting to this new lifestyle may cause you to pick up some “habits” or behaviors you routinely do to stay as healthy as possible.

To better understand how this condition can affect a person’s day-to-day life, we asked our Mighty community to share the habits they’ve developed because of their dysautonomia. Maybe some of the following will sound familiar to you, too.

Here’s what the community shared with us:

1. “I always know where a chair is! I get so tired so quickly and standing for any amount of time takes a lot out of me, so I make it a point to know where I can sit in a hurry!” – Amanda E.

2. “Several grip bars in the shower. And as soon as I start to feel overheated, I immediately stop what I’m doing and cool down. If I can catch it quickly, it sometimes doesn’t get out of control.” – Sue L.

3. “I’m constantly moving when I have to stand in line. I lift my legs one at a time, bounce, do calf raises, whatever I can to keep blood from pooling and avoid being dizzy.” – Ciara C.

4. “Always telling someone where I’m going. I live alone but still text my mom when I run errands, tell coworkers when I run to the bathroom or shipping areas, etc. If I was to have a problem then someone at least has an idea where I am.” – Bay H.

5. “Mostly grocery shopping at night when it’s dark. The less sun, the better my symptoms.” – Sabrina S. L.

6. “Holding my breath when I bend down to raise my blood pressure momentarily so I hopefully don’t pass out from the bending.” – Diana W.

7. “Stopping suddenly, becoming still and quiet. Eyes closed and meditative breathing, closing the world out until I can get my heart rate back to normal so I don’t black out. To someone on the outside looking in, it must look pretty odd, someone standing in the supermarket, tightly clutching the shopping cart, doing relaxation exercises while the rest of the world goes on with their day.” – Donna-Jean I.

8. “When sitting in a chair I always sit with my legs crossed up on the seat because if I let my legs dangle they hurt. Wasn’t until I was 22 and was diagnosed that I made the connection.” – Sabrina M.

9. “Gatorade every time I wake up, even from naps! I sit in the shower, drink big chugs of water about five times a day. And try to remember to take my medication without my mom telling me to.” – Linnea F.

10. “I constantly pace myself when I’m moving around. If I’m doing a lot of motions I stop every five minutes and rest to avoid symptoms getting problematic. For example, taking breaks when cleaning my room. I also pace myself when walking in public, lean onto or grab things when standing still. I pace everything which also saves energy.” – Allison B.

11. “A stool in the bathroom for when I get ready. Sitting in shower. Simple things that make my life easier.” – Ashley H.

12. “My purse always has Gatorade and an emetic bag like they use in hospitals. Gatorade to stay hydrated, and the eme-bag for the chronic nausea.” – Caroline M.

13. “Counter-maneuvering – standing with my legs crossed, so as to get the blood to go back up to my head. I do it out of habit, which means I just stand like that preemptively.” – Susan F.

14. “I have an inappropriate sense of humor. If you don’t see the humor in things, life can get super depressing. I make a lot of jokes about my condition and issues. It may make others uncomfortable (hopefully not), but it makes me feel better and more in control of my life.” – Carolyn F.

15. “Lying down and putting my feet up, like on a wall or shelf or chair, and I do it anywhere, anytime. Doesn’t matter. I was passing out 10 to 12 times a day and that’s the only thing I can do that keeps me from actually passing out… it’s a sight to see when I’m at Walmart or something, let me tell ya.” – Kellie V.

16. “Salt on everything, Gatorade and water all day every day, taking baths because I can’t stand in the shower, compression socks and sitting down while I get ready (such as doing hair and makeup).” – Hunter H.

17. “I’ve become super organized, I live out of my agenda book and everything has its place in my apartment. It’s such a stress relief to not have to look for anything, not have mountains of clutter around me and always know (appointment-wise) what to expect from my day.” – Sami H.

18. “Sitting straight up in chairs, because sitting against the backs hurts my back and then it hurts to get up and walk.” – Tiffany L.

19. “I am never ever without a bottle of water no matter where I’m at! It’s my security blanket.” – Breanna H.

20. “Sitting. Everywhere. It doesn’t even faze me to sit down on the floor during work or to find the closest place to sit in every store (even when I look like a child)! I sit on the floor in the shower. I sit on the kitchen floor when I load the dishwasher. Whatever works. Sitting means being slightly less dizzy. It’s just normal for me now!” – Elizabeth L.

21. “Work smarter. Not harder. I am no longer able to carry my laundry so I loop a cane through the basket and drag it to the laundry room. Sometimes, you need to give your body a break.” – Deanna D.

What’s a habit you’ve developed because of dysautonomia? Share in the comments below!

Originally published: September 13, 2017
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