Master Reset: POTS

“Shit, I don’t think she’s breathing. Quick, help me get these coats off, and look for a pulse.”I had just come in from my nightly walk to see my two best friends standing in the kitchen, talking, and our kids all running around the house, playing happily. At once, everything went black, and the last thing I remember is leaning on Shea, saying I felt dizzy. I was lost in a deep, black abyss, trapped within the confines of my own mind, I recall thinking “This is it, I’m dead this time.”Next came a deafening ring, followed by murky conversation, pinholes of light, and a fluttering sensation on my chest. They had done it, they pulled me from the abyss and were performing CPR. After a few minutes, the ringing stopped, my vision returned to normal, and I was able to communicate, albeit quite weakly. The two of them were leaning over me, calling my name and asking basic questions, a mixture of worry and relief on their faces. My heart had stopped briefly, and I was no longer breathing. I laid on the floor, gathering the strength to crawl to the couch while they described what happened. Essentially, I was dead for about 90 seconds, they explained in vivid detail watching the “light” disappear from my eyes.This is what I call a “Master reset” and I’ve experienced 4 in the past 12 months alone. Now to most people, this would be a very serious issue and immediate cause for concern. However, this is just one of the many things that I deal with as someone with an Autonomic Nervous system disorder. Make no mistake though, I am not saying the above experience is typical and should be taken lightly. I was fortunate enough to already be in the company of trained medical workers. I, like most with Dysautonomia, just already know that there is little that can be done about it. They don’t call it an invisible illness for nothing. Had I gone to the ER, my body would be done with the reset, thus showing normal vitals. So even though it’s always a 3 day recovery period of bedrest following a reset, my vitals and tests would just reflect normally with doctors shrugging their shoulders and sending me back home, calling it a “Syncopal episode.”ANS disorders are more common than you think, yet research and treatment of these illnesses are still in it’s infancy. Doctors currently can only treat the symptoms, rather than the disorder itself. Many people are affected so severely they are unable to work or perform basic tasks without assistance of some kind. The average length of time before someone is properly diagnosed is even more startling. All too often, people are tossed like a hot potato from specialist to specialist, being told “It’s all in their head, they’re drug seekers, hypochondriacs, making it up, just need to have a more positive outlook, etc.” It’s really no surprise then the depression, anxiety, doubt, and guilt these people also struggle with. Having a strong network of supportive friends and family is crucial, sadly many people aren’t afforded that luxury. Awareness is important now more than ever, the more that is understood about this disease, the more we can do to help those affected by it. Imagine if the medical community had the same passive, uneducated attitude towards something as serious as cancer? The world would be in an uproar, demanding doctors educate themselves and their staff.There are mothers, daughters, sons, fathers, sisters, brothers, etc. That have lost their ability to walk, to bathe themselves, to leave the house, to work, care for their children and have normal lives. No walking across the stage at graduation, no running after their children outside, no lunch with friends. This could also mean struggle and even homelessness when one partner is unable to work and the burden to provide falls on just one person. With any other illness or tragedy, we put great effort into helping those families because we know it’s an impossible situation that no one should ever have to bear alone. So why should us with ANS disorders be any different?To some my story may seem over dramatic or embellished, but that’s a glimpse of real life with an ANS Disorder. It’s not “Oh I get really tired sometimes too.” or “I wish I had an disease that made me lay in bed all day.” Maybe people don’t care because it’s not something that’s commonly terminal, or maybe because it doesn’t affect you personally, but I assure you that this is something that deserves your attention. No one should be so used to a loved one losing consciousness, they don’t even give it a second glance when they see it, much less when it’s their parent.

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