When people find out I’m sick, they often ask what they can do to help me. Now that I know what’s wrong I am better equipped to answer this, but the most helpful thing is getting others educated on my condition. A lot of it becomes common sense after that.
I have dysautonomia, but more specifically I have Postural Orthostatic Tachycardia Syndrome. The best description I’ve read about it thus far comes from an article from The Detroit News by Marney Rich Keenan “POTS is a malfunctioning of the autonomic nervous system, which is like the thermostat of whole body. The autonomic nervous system controls most everything our bodies do automatically, such as heart rate, blood pressure, digestion, body temperature, even pupil dilation. With POTS, circulation is thrown out of whack. The most identifiable symptom is a pooling of blood and fluids to the legs and lower body upon standing. Low blood pressure is a key factor. The heart rate increases dramatically because the body is attempting to compensate for the drop in blood pressure.” The rest of the article “Pots Disorder Derails The Young and Healthy”which is great can be found here. http://www.detroitnews.com/article/20140221/LIFESTYLE01/302210010
What this means for me on a daily basis is that my body prefers to stay horizontal as much as possible. My body is affected every time I sit or stand up, by a dramatic rise in my heart rate. Bending over to pick things up also feels pretty awful. My body is constantly trying to stabilize itself and this consumes most of my energy.
This condition isn’t particularly life threatening, but it can make leading a normal life seem pretty impossible. I am at high risk for syncope (fainting/blacking out) which I have experienced before. Assuming I don’t hit anything on the way down, and I get fluids this is manageable. The best way to keep this from happening is to keep me hydrated and for me to consume lots of salt. So if we’re hanging out make sure I’m drinking water and eating every few hours.
My condition also means that I’m particularly vulnerable to catching colds or whatever else is going around, so if you think you’re sick or might be getting sick, do me a favor and stay away. Getting through every day is difficult enough without adding any further complications to it.
I’m very sensitive to motion, the less traveling I do the better, and I try to keep the amount of driving I do very limited because of this. When I say I can’t dance, I mean not only that my dancing is an embarrassment to myself and anyone watching, but more importantly that I shouldn’t because the movement will definitely make me dizzy. This also means I shouldn’t watch 3D movies, play Rock Band with you, go on roller coasters, or even the Innovation attraction at Disneyland because half of the first floor rotates. I unfortunately found out how sick the last three on that list make me on one of my trips to Disneyland. I’m pretty sure I spent more time looking for and sitting on benches at Disneyland than anything else.
One of my favorite pastimes is the many rock concerts I’ve been to. These are now a very bad idea for several reasons, I’m very sensitive to light and noise now, and they usually expect you to stand around for a few hours. Standing up for even 20 minutes is difficult enough for me to do. This makes simple tasks like grocery shopping hell for me. So if you happen to run into me somewhere, and want to have a long conversation, than find a comfortable place for us to sit. I’m hoping to go to more concerts, but I will have to stick to the ones that I can sit down in chairs, where people won’t get mad at you for suddenly deciding that you have to sit down in the middle of a crowd and then proceed to black out like I did at a They Might be Giants concert.
Don’t expect me to be a good hostess. I’m happy to offer you whatever we have in our fridge, but it’s an incredibly bad idea for me to continually get up and down for myself, yet alone for others so make yourself at home. Also if I have a bunch of people over for movies or games, try not to take offense if I need to disappear into my room for half an hour to recharge so I can come back and spend more time with you. It’s either that or kick everyone out, and even though it’s exhausting for me I do love and need to be around other people so I would usually prefer you to stick around.
Don’t depend on me. This one is probably the hardest for me. I try to be a woman of my word, so when I tell someone I’m going to be there, I do my best to make that happen, but the reality of my illness is that I just don’t know how I’m going to feel hour to hour. Morning are particularly bad for me. Pretty much lower your expectations if you invite me anywhere before 1pm. Also, I have become terrible at staying in touch with people. This doesn’t mean I have forgotten you, or stopped caring, I care quite a lot actually, I just don’t have the energy to express that anymore. Send me a message, but try not to read too much into it if I don’t respond right away. You may have just messaged me while I’m sleeping, in a lot of pain, or simply in one of my brain fogs. I may forget you messaged me, my memory is not what it use to be. I do love hearing from my friends. I am very isolated where I am currently at.
I try to make sure I go for short walks every day, but exercise in general makes me feel miserable, so we won’t be going on any hikes or long walks on the beach together. I hope as I continue to exercise this will improve but even riding a bike is a really bad idea for me.
My three basic needs are lots of rest (being horizontal being the most ideal), lots of fluids, and salt. After writing this I also realize that I’ve basically become a terrible friend to have. The girl that would run to your rescue, go for runs regularly, and loved to play in the mosh pit, has now become someone who just really needs a nap, and can maybe watch a movie with you. You don’t have to tell me I’ve become boring, I’m living this nightmare. If I am choosing to spend time with you at all, take it as a compliment that I have spent some of my precious little energy with you. I look forward to trying treatments and getting my life back to roller coaster mode, but until then just think of me as that friend to relax and watch a movie with.