excursions can be deadly

I was recently asked why I don't go places, when I probably could...instead of laying in bed all the time. Others with my condition get out and do stuff despite it and I think that is what they were getting at.


Church is hard for me not all from a getting up and going situation but more of an issue of what happens when I am there...or anywhere really. To answer said person's question, when I am out of my house there is an amazing amount of stimulation happening all around me. Due to the Dysautonomia portion of my illness this stimulation sends everything into a flare up making me so sensitive to every sound, movement, and motion. I have to wear sunglasses when I am out because the sun sets it off, the sound of the cars around me seems magnified, the motion of the car is like riding a speed boat, the sight of the commotion makes my head spin and the act of being around people makes me exhausted within minutes. I am more sensitive on some days than others but in general when you put all of these things together I go downhill so fast, everything spins, my hearing goes bye bye followed by my sight fading away and then down I go.


If I am in a wheelchair or using my cane or walker I am always fighting so hard to keep things under control that I often have to lay my head down because the feeling is like being on a rollercoaster and zaps any little bit of strength I had to just keep my head up. I know people go out anyway and on occasion I will pretend to live a normal life and suck it all up and go places. You have too. Walls close in, you start talking to your cat and it talks back, you are on a direct path to insanity. Here is the root of why I don't take more risks: if I pass out it is a matter of life or death. Others can go around passing out places and although it sucks and is a horrible feeling they usually have no permanent damage. Due to high dose blood thinner injections, if I pass out and hit my head there is a 96% chance you will never see me again. My doctor tells me to crawl to places if I have to as he drills in the fact that a tap on the head can cause a brain hemorrhage and my only hope is to get bags and bags of plasma but in reality he says I probably would not survive long enough to get plasma and that if I survived I would need immediate brain surgery which would likely end in the surgeon just standing there and watching me slowly bleed out and die and he is helpless to do anything. This HAPPENS PEOPLE. Every time I see my hematologist this is said at least 3 times.


So, yeah I could take risks but I am not willing to take such a risk with my mortality at stake. It's not worth it. Everyday I have to make a choice based on how I feel of what I can or cannot do that day and it's a fine line. I do my best with this hand God dealt me by being smart about what and when I do things. So, said person there you go. My explanation that I did NOT owe you but you got it anyway.