Dysautonomia Awareness Month is here!
I am being quite active this year. I don’t think I was even really aware of it last year, or if I was, I was still kind of embarrassed and confused by my diagnosis so I definitely wasn’t as active and excited about it. But this year, oh my goodness! If you are following me on Facebook or Instagram, or both, you have probably been quite surprised in the uptick of my postings and the sheer amount of turquoise.
By the way, dysautonomia’s official awareness color is turquoise! And, if you also weren’t aware, that is one of my favorite colors and has been for years now, so it’s an awesome coincidence and just makes this even better!!!! ALL THE TURQUOISE! *cough sputter* Sorry about that.
Anyway. But my social media feeds have been inundated with all things turquoise lately. As well as “fun” facts (okay, they’re actually not that fun) about life with dysautonomia, previous posts about dysautonomia, shared posts about dysautonomia, etc. It’s just ALL ABOUT DYSAUTONOMIA!
I’m really, REALLY trying to get the word out about it! Seriously! I may have a rather impressive list of diagnoses, but nothing turned my life upside down as much as dysautonomia. And, I was relatively lucky. How? I got diagnosed pretty quickly, and I don’t have fainting spells and haven’t been hospitalized, yet.
So, please. Help me get the word out!
Learn about it!
My absolute favorite resource is Dysautonomia International. They’ve also been creating some fantastic graphics (many of the images I used in this post were created by them specifically for Dysautonomia Awareness Month). Their website has a lot of great resources, but my favorite way to get information from them is actually following them on their Facebook page! They are always sharing the latest research and tips. Seriously! Check them out!!!
Follow Me & Share My Stuff!
A little self promotion never hurt, right? But on a more serious note. The best way to spread awareness about dysautonomia, and help those of us that suffer from it, is to talk about it! So how do we start the discussion? Well, find the people that are trying to talk about it and share their posts on your wall. Like and comment on their Instagram posts. You don’t have to suffer from a condition to share about it.
Day 1: #Dysautonomia Strong Selfie -- What's my story? Out of nowhere, I started getting weird dizzy spells in the evenings. My usual fibro fatigue started to get completely out of control (as well as other symptoms), to the point that I would sleep more than 14 hours and want to go back to bed after 6 hours awake. The mild tachycardia I've had my whole life started to get out of hand, with a resting heart rate over 110bpm. I started needing help walking the 20 feet from the couch to the restroom in the evenings due to dizziness and fatigue. Then the blood pooling started and my feet would turn purple and swell horribly just sitting (even sitting with them pulled up). My hands would swell too, and it'd hurt to bend my fingers. I stopped driving as the dizziness got worse at all times. One night, I felt bad I had Dan take me to Walgreen's to have my blood pressure checked: 156/110. I got into my doctor first thing and on a BP medication. Eventually, my fibro doc suggested a thing called POTS, but he didn't know much about it. I researched it, forced the tests, and got the DX. But I don't fully fit the criteria... I definitely have dysautonomia, for sure, but maybe not POTS. It's hard to get the right testing and treatment here though, so for now, that's my DX. #TheDysautonomiaProject #DysautonomiaAwarenessMonth #MakeNoiseForTurquoise #DysautonomiaStrong #pots #potsie #spoonie #spoonielife #diagnosisjourney
Other People Talking About It
Dysautonomia Support Network: Check out their Facebook page (I haven’t really looked into a lot of their stuff yet, but some of my really good friends have been sharing their posts the last few days and they’ve had a lot of goods ones!)
TONS of people on Instagram! Seriously! You need to scurry on over there and check out the hashtags #MakeNoiseForTurquoise , #DysautonomiaAwarenessMonth , #TheDysautonomiaProject (they’re running a 31 day photo project and it’s resulting in some really fun photos!), and #DysautonomiaStrong !!! You will NOT be disappointed!
Now seriously, let’s go
Graphics in post body all found on Dysautonomia International’s Facebook page and labeled as downloadable and shareable for awareness.
Post feature image created using one of the DI images and my own creation from Canva. You may use it for awareness! I would just like it if you would let me know either in the comments below or by using my contact page!