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  1. #1
    Join Date
    Jun. 9, 2003
    Location
    Alabama
    Posts
    5,475

    Default Dysautonomia - Anyone with firsthand experience or any experience/knowledge?

    I've recently found out that a friend of mine has been diagnosed with dysautonomia -- which was unfamiliar to me. After googling it, I've found it
    quite overwhelming. She has alot of other issues in her life right now, also.
    I want to help, so I'm trying to get my facts straight and understand all I can about this and help with her other issues as well. Anyone care to comment?
    TIA.
    PennyG



  2. #2

    Default

    It sucks. It is unpredictable and because it is an invisible illness people are often called lazy or faker. I was thinking about how to explain it to someone the other day. You know hoelw annoying it os when you have hiccups and they won't go away? That's just a tony part of what dysautonomia is like. All the automatic things a body should do are not automatic anymore. It frustrates the patient, their doctors, family and friends.

    Your friend is blessed to have a friend like you. Www.dinet.org Is a great website for info. Ifbyour friend hasn't seen a geneticist she may want to because dysautonomia is often part of a bigger issue like a connective tissue disorder or mitoxhondrial disease.

    As for supporting her.... please don't assume anything. She may have to bail last minute on plans but please Dont stop inviting her. No pep talks on "sucking it up". If we could do it, we would. We miss the old us more than anyone. Modify plans as possible to inxlude her. Instead of going out, plan a night in. Understand that many things are trigers for dysautonomia and make things a lot worse. Some of mine are crowds, loud noise, bright lights, smoke or intense smells inxluding handsoap/perfume/deoderant/etc. Ask if you need to skip the perfume or scented products. Be an advocate for her when she can't. We often overdo it bc we sont want ro be the party pooper. Sometimes just knowing we can ask to leave if we need to makes a big sifference. And if you or your friend haven't yet, google and read "The Spoon Theory."

    I have dysautonomia and a binch of other rare acronyms. They suck. Good friends are priceless.
    "You are a child of the universe, no less than the trees and the stars;
    you have a right to be here." ~ Desiderata by Max Ehrmann



  3. #3
    Join Date
    Oct. 7, 2006
    Location
    on and off the bit
    Posts
    3,948

    Default

    What PalominoMorgan said.

    Also, no "just breathe," or "relax" or "get a grip" comments. Again, if we could, we would.

    It can make one absolutely miserable. You walk around feeling off-kilter. Sometimes not so much when you're out with a friend as when you're out alone, but on the other hand, sometimes when that feeling hits when you're out with a friend you feel more pressure to "just get a grip" and keep going.

    You know about everyone's "flight or fight" syndrome? Well, ours doesn't switch on and off as reliably and appropriately as some other people's. It's like your engine is revving All. The. Time. Which is why I think it causes panic attacks. Which can mimic heart attacks.

    I quit drink caffeinated beverages, period, when away from home. Now, out to eat with friends, I drink ice water or maybe sometimes lemonade if I think the sugar won't get to me.

    Your friend is truly blessed to have you, and you are blessed to want to want to learn more. There is another thread on COTH somewhere, started at some time.
    Founder of the People Who Prefer COTH Over FB Clique
    People Who Hate to Rush to Kill Wildlife Clique!
    "I Sing Silly Songs to My Animals!" Clique



  4. #4
    Join Date
    Apr. 17, 2002
    Location
    between the barn and the pond
    Posts
    14,278

    Default

    I have a close friend with it- I just tell them 'tell me what to do, and I'll do it'. Just help her keep an eye on herself, and be a good listener.



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