Friday, 17 July 2009

What the Hell is Dysautonomia??

What the hell is Dysautonomia? Sound like a great name for a band right?
Here is Dysautonomia with their latest hit "Gravity is not my Friend".

Dysautonomia otherwise known as that bastard vague syndrome which is hard to understand, even harder to explain and craps on your life or, as I now like to refer to it, Bob. Bob is like a crappy boyfriend. He turns up only when it’s convenient for him, forgets your birthday, buys “you” an x-box when you really want a bottle of Chanel no. 5, and takes you to Wolf Creek for your anniversary when you wanted to see Atonement. He’s the guy you’re embarrassed to introduce to your family and friends. The one you just want to forget but who you keep running into when you’re out on the town.

Bob occurs when your autonomic system, like Elvis, leaves the building. The autonomic system is the "autopilot" of the body that controls the automatic processes in your body, the things your body does without conscious thought eg your blood pressure, heart rate and breathing. When it misbehaves it can cause a range of fun symptoms:

Tachycardia (fast heart rate)
Bradycardia (slow heart rate)
Orthostatic Hypotension (low blood pressure when upright)
Orthostatic Intolerance (inability to remain upright)
Syncope or Near Syncope (fainting)
Severe Dizziness
Exercise Intolerance
Exercise Fatigue
Migraines
Nausea
Gastrointestinal Issues
Nausea
Insomnia
Shortness of Breath
Heat Intolerance
Trembling Limbs
Brain Fog
Frequent trips to the loo
Visual issues
Seizures

These can be mild or severe, a day after day after day crapfest (guess which category I fall into?)
You can have one or two symptoms, loads of symptoms and the symptoms can change day to day. Bob is one unpredictable disorder. Bob is a delight.

There is no cure for Bob. There are medications, lifestyle and diet changes. But everyday is about managing your symptoms as best you can, rejoicing in the days you can do a couple of things you really want to do and accepting the days where just getting out of bed is huge accomplishment.

This is the joy of living with Bob. It can make you feel like a freak at times.
Well I say EMBRACE YOUR FREAK!!!
Michelle :)

10 comments:

  1. I am honoured to rate a mention in your blog! But babe you don't need to borrow my courage - you have the most amazing outlook and handle your challenges with such 'poise.' It is a priviledge to be your friend; to laugh and cry and simply just go crazy sometimes! Love you heaps, Kerri xo
    P.S. Well done in 'getting it out there' I am sure your story will touch many many people.

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  2. This is just amazing. I can't imagine how frustrating and scary living with this must be for for, but I gotta say that you are one hilarious chick. Good for you for sticking it to your man Bob!

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  3. HONEY, I EMBRACED MY INNER FREAK YEARS AGO AND WHEN I THOUGHT I COULDN'T EXCEED MY FREAKINESS, THERE WAS A BASEMENT LEVEL; ALONG CAME DYSAUTONOMIA=)
    I BELONG IN A CIRCUS OR SOMETHING!LOL! HAVE YOU EVER CONSIDERED THE POSSIBILITY THAT ALL PEOPLE WITH POTS/DYSAUTONOMIA ARE STARTING THE EVOLUTION PROCESS OVER AGAIN?? THINK ABOUT IT; NO ONE STARTS WALKING ON TWO LEGS, AND I DON'T BELIEVE AS THOUGH WE WERE MEANT TO BE ON TWO LEGS B/C THE SPINE IS SUCH A HORRIBLY MADE SYSTEM IN THE BODY....OLDER PEOPLE GET THE THORACIC KYPHOSIS(WELL, I OF COURSE ALREADY HAVE THAT...BUT I'M REALLY A 70 Y/O IN A 28 Y/O BODY FOOLING A LOT OF PEOPLE!!)ANYWAY, IT'S SOMETHING TO THINK ABOUT. YEARS FROM NOW, THEY'LL BE PICS OF PPL WITH DYSAUTONOMIA/POTS AND THAT WOULD HAVE BEEN THE BEGINNING OF THE PROCESS..........CLEARLY THIS IS YET ANOTHER 3AM THOUGHT=)
    LONG DISTANCE HUG TO YOU!!

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  4. Ha ha, love it! Just found you linked on another blog, and had to find out your pet name for your diagnosis.

    Loves Bob's description here! It's sassy and perfect! Good for you, and your good humour - the only sane way to manage chronic illness.

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  5. Tash - welcome and thanks. Yep, a bit of sarcasm goes a long way in managing chronic illness. Saw on your profile your a psych and work in rehab. Rather exciting as I used to the neuropsych in a rehab ward here in Melb! Well pre-sick and having to give up work that is :)

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  6. You forgot to mention the best part...anxiety! lol...random, frequent anxiety for absolutely no reason at all.

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  7. you need to look into gerson therapy there have been others with dysautonomia that have had a lot of success

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    1. Thanks Rasp Berry. I know a few people who do Gerson, but unfortunately I have a range of dietary intolerances and allergies and am already on a restricted diet, so it's not for me.

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  8. I've been living with this for years now & I know the hell it puts you through. Be blessed. Fight it with all your mite. It's a lonely disease.

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  9. Hi - I have dysautonomia too, although a milder form. It is ever frustrating, and hard to make others understand. I have used your blog to try to help my family understand. Thank you for sharing your story. My thoughts and well wishes are with you. Many thanks MBC

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx