Dysautonomia doesn’t ‘look sick’ when the symptoms aren’t present. It only looks sick when the symptoms kick in, and that can happen just about any time for me. My specific triggers are heat, pain, and fatigue. I can’t leave home without an ice vest (about 5 pounds of ‘synthetic ice’ in four inserts that fit into a vest). If I get overheated, even with the vest, the chances of my blood pressure and/or heart rate going bonkers is pretty good.
From the outside, it doesn’t look like anything is wrong with me. But there isn’t any part of my life that isn’t affected. My activity tolerance, even for basic household chores, is lousy. I get things done, but it takes a lot longer than it used to. No matter where I go, I have to have a contingency plan in the event I start to feel like I’m going to lose consciousness. I do have some warning, but if I’m away from home, the only thing I want to do is GET home. I don’t want people around me when symptoms kick in.
Dysautonomia is a disorder of the autonomic nervous system. It’s the stuff that is either reflex or not within my ability to consciously control. Something goes haywire when I am up for too long, get overheated, or my chronic pain isn’t adequately controlled, and I simply pass out. My body doesn’t compensate for the low blood pressure properly. Or, I get a rapid heart rate that sometimes includes abnormal heartbeats and rhythms.
It’s frustrating when people don’t understand that I am not avoiding contact just for the heck of it. I would love to be able to do more. I know my limitations. I know when I can or can’t do something. Every single day my ability to do things is affected. Going anywhere is risky because of the temperature. It may feel fine to others, but for my body it’s too warm. Even in the winter I have to wear the ice vest. When I do my once a month trip to the grocery store I have to wear the ice vest and remove my coat immediately when I get inside. Usually I go in the middle of the night because there are fewer impatient people, and it’s cooler.
Making a sandwich or emptying the dishwasher is really painful. I still have to do those things but I also have to rest afterwards. Laundry is painful. But it gets done. I’m not feeling sorry for myself- it’s just the simple truth. So I am responsible for avoiding things that make it worse, or could trigger completely losing consciousness. That’s my ‘job’ since I can’t work. I have to make my life as decent as possible without taking unnecessary risks. Risks to me are simple things to most people.
I know I look fine. But please don’t judge me for that when I say I can’t do something. I’m thankful that I’m not any worse, though the dysautonomia seems to be progressing. I still have a lot to be thankful for; I still live by myself, and get things done, even if slowly. For those who haven’t seen what happens, please don’t assume I’m just being weird.
Outward appearance seldom tells the complete story about anybody.