Dysautonomia Awareness Month 2020

 

I did a thing and Arizona just got a little cooler! 😎 

October is known as Dysautonomia Awareness month in the chronic illness community and now it is officially proclaimed Dysautonomia Awareness Month in the state of Arizona. There are many forms of Dysautonomia. I have two diagnosed forms of dysautonomia, HyperPOTS (Hyperadrenergic Postural Orthostatic Tachycardia Syndrome) and NCS (neurocardiogenic Syncope). HyperPOTS basically means that I have an excess of adrenaline, in other words, I’m perpetually in fight-or-flight, fun right? 😅 Since my diagnosis, my symptoms have worsened and new ones have popped up, my limitations have multiplied, and other chronic illnesses have reared their ugly heads. From chronic kidney infections, GI issues, dizzy spells, brain fog, syncopal episodes, IST (inappropriate sinus tachycardia), and plain old exhaustion; they all add up and can make the simplest daily tasks unmanageable. 

Here’s a more scientific explanation of dysautonomia. Dysautonomia literally means that your autonomic nervous system is dysfunctional. So all of the "automatic" functions of the body that we don’t think about, such as heart rate, blood pressure, digestion, kidney function, and temperature control, aren’t automatically regulated as they should be. These conditions dramatically alter the lives of those of us who live with these illnesses. Hopes and dreams feel out of reach. Guilt is an everyday emotion, feeling like you’re weak, lazy, and a burden. And then you add on the fact that these illnesses are invisible and people, let alone doctors, don’t know much about them, which makes it that much more lonely. 

That’s why this sheet of paper means so much to me. I had tears rolling down my face as I picked it up from the governor’s office. For years, I went without a diagnosis. After hearing from multiple doctors that it was just in my head and that if anything it was “just anxiety”, I believed them. I thought that everyone felt the way I did, that everyone must have been in the pain I was, but that I just must have been weak and lazy. I guilted myself for so long and still struggle with that mindset. But holding this piece of paper that recognizes the validity of dysautonomia, recognizes my illness, recognizes ME...it got me weepy.

To those of you who have friends or family who struggle (or who may be searching for a diagnosis!) just be there for them. Listen to them and don’t guilt them; we don’t need any help in that department. 😉 Help them, because it’s hard to ask for help. Educate yourself to know what to do if they faint or how you can help to relieve their symptoms. Encourage them to advocate for themselves because that is the ONLY way to get a diagnosis. Have an open mind, and please, please, please don’t suggest we try yoga or go vegan. Please believe us, that is not a thing. 

And to my fellow potsies, this is OUR month! Let’s be loud, let’s raise awareness, educate those around us, and doggonit, let’s pat ourselves on the back for handling every symptom, every flare, and every setback that’s been thrown our way with as much grace as a dizzy spoonie can have. 💙