Sydney Jones's profile

Life with Dysautonomia

This is my heart rate less than a minute after changing positions from sitting to standing. There are days when the difference between these numbers is much more drastic.
The severity of my symptoms fluctuates any rate from daily to hourly. So small things, like having the curtains open, depend on the severity of my migraine, how much sleep I got, etc.
With POTS, one of the biggest struggles for me is exercising like I used to. I used to be incredibly active in multiple sports, Muay Thai, and crossfit. Now I'm supposed to just stick to stretches and light activity.
Two of the things people with Dysautonomia increase to extreme levels are water and salt intake. I'm supposed to drink 1-1.5 of these a day (which rarely happens, if ever.)
Medication hasn't been extremely helpful in my case, so instead I get IV infusions twice a week. These are usually saline or some sort of nutrient-enhanced drip.
I spend a lot more time than I'm used to in my room, so I've started taking up stationary hobbies like gardening. Plants just make me happy. :)
I'm sure you've noticed, but I dye my hair quite frequently, and always a variety of colors. Sometimes my illness makes me feel like I have no control, so dying my hair is my way of having one thing I have permanent control over.
I was involved in Air Force ROTC on campus for two years, and I did AFJROTC all through high school. I was medically-released because of how the condition affects my heart. The detachment has been supportive and I still take the classes and go to all of the events.
One of the harder symptoms to deal with is syncope, or fainting, because of the high heart rate/low blood pressure combo. I'm usually only out for a minute or two, and afterwards it takes me a while to even out so I can get up again. This was actually taken by my roommate after an episode.
Early last semester I lost my service dog of 6 years to old age, which has made it hard for me to get around campus on my own. Thankfully, I'm in the process of receiving my next medical-alert and mobility support dog, so I can function again on a more normal level.
Life with Dysautonomia
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Life with Dysautonomia

A quick capture into my daily life with Dysautonomia

Published: