I am 29 and started having symptoms of dysautonomia when I was 17. I have POTS, SVT, EDS, NCS, as well as a few other issues. I had an oblation in 2006 for SVT because my heart rate was going over 260 beats per minute. We have a very energetic two and 6 year old that I have trouble keeping pace with, two dogs, one of which is a puppy who was just rescued from a horrible situation, two cats, and two saltwater fish tanks. I started my own business from home because I missed working so much. All in all I just miss having a small amount of energy to get through the day. I would love to tell anyone who would like to hear more about my personal story, but I wanted to share what I am starting to put together to hopefully help us all down the road.
Yesterday everyone was very excited to share how beneficial the donations from the ice bucket challenge have been with helping further research into ALS. A friend of mine said she wished there was something that could go viral to help support POTS. That got my gears turning. Most people, including myself, who have POTS, most likely suffer from other issues that fall under dysautonomia. I am in a few groups for POTS and EDS on Facebook and shared my Dizzy for Dysautonomia Challenge idea, and so far everyone has loved the idea. My idea is to have people take a video doing the dizzy baseball bat spinner game. Whenever people ask me to describe how I feel I either compare it to that or doing something like crouching down gardening for a long time and then standing up quickly, that dizzy and see spots feeling you get, that’s how I feel every time I sit, stand, or stand too long. It would be similar to the ice bucket challenge. I am going to start a Facebook page where people can share videos and I will link to where donations can be made.
I have been reading about the ice bucket challenge and the biggest issue was that was all it ended up being for many people and they didn’t exactly know why they were doing it, just that they were challenged to either donate or do the challenge in lieu of donating. Even on some TV shows they did the ice bucket challenge, but did not mention that they were doing it for ALS awareness. If we do this, I want to make sure the name is shared with the challenge. And maybe instead of getting out of donating all together by doing the challenge, the person being challenged could be asked to donate a small amount, even if it’s $1-5.
I will be looking into quite a few places to donate the money from this challenge to, but wanted to see if you all had suggestions.
I am hoping that the silliness of the videos will catch on and spread awareness. I know that the way we feel isn’t funny, or a laughing matter. But the idea of this is to share with the world just one of our many symptoms and hopefully get donations to further research dysautonomia and help us all live more normal lives one day down the road.
Thank you for taking the time to read this. Any ideas, thoughts, or advice would be appreciated