Dysautonomia Awareness

So, October was much busier than I had ever intended, thus my great plans for blogging consistently for dysautonomia awareness has fallen to the wayside. BUT! With two days to spare I have a (what I think) pretty cool way to see dysautonomia from our eyes. I've said many times (or feel like I have) that having an invisible illness is sometimes a lot more frustrating than one that can be seen. And though I have my fair share of physical problems to add to the mix, I still more often than I would like get comments like "You look so great!" "You're not sick", or "You look fine". And it's really hard to not take it personally when people don't understand that I'm not being lazy or anti-social, but I generally just feel terrible and sometimes can't keep up. So here's in a nutshell what someone with an invisible illness, specifically dysautonomia, wants you to know about them.

I took the basic framework of this from another blog that is completely dedicated to dysautonomia awareness, and think it's a great resource if you want more info! (http://dysautonomia.weebly.com)

Most of our hearts are on overdrive....all the time. 

Just standing up makes my heart race. Typically it's around 100, but I can just be sitting around doing homework or something and it can easily be over 120. And when I work out, which is more of a "warm up" to most athletic people, I have to be careful because it's averaging 155-160. So having dysautonomia makes us a lot more tired than healthy individuals, because we have to use about 3 times as much energy to do regular things. Which is why sometimes after a long day, I don't feel like I have enough energy to go out at night, or for example this weekend I went to a wedding and had to leave earlier than a lot of my friends because I was so tired, and I don't think they really understood. And on not so great days when our hearts are racing, the aching of our bodies gets worse, and you get to add lovely things like dizziness and nausea to the mix...so sometimes we need to rest!

One thing that for me in particular has gotten significantly worse this year is my memory. I legitimately don't have much of a short term memory anymore, sometimes I have a hard time finding easy words, and I'm just really out of it some days. And when I comment to someone that I don't remember something very easily, most of the time I get a comment like "Oh, my memory is terrible too". I get that some people don't have great memories to begin with, but it's not the same. I used to be very well-known in my family for having an insanely good memory...and now it's gone. I have to literally write down everything or I won't remember, even simple things like calling someone after work, or when a good friend comes in town. This has been one of the most frustrating things to deal with, and has been hard to compensate for. You never realize how much you rely on your short term memory until it's not there anymore. In dysautonomia world, we call this lovely symptom "brain fog". There isn't enough blood flow to the brain, and it can effect even super simple things like remembering to pick up milk at the store, or calling someone back in 5 minutes. I think it took a few weeks for even my parents to realize what a real situation this was. At first I thought it was from various medicines I had taken, but then I realized the true culprit. Thankfully, my parents have now embraced it and help me work on my memory, without making me feel like an idiot. If they want me to call someone, they write out the number and tell me what to ask for so I remember. Or they help remind me of things I need to do, and remind me to write things down so I don't forget. This is another thing that I sometimes get ridiculed for with people that don't understand how bad it really is. This is a really frightening symptom that a lot of us deal with, so the best thing is to realize that we're not idiots - just trying to deal with something we can't control. So if you know someone with this issue, kindly remind them of things they need to do, or write things down for them...but don't make them feel dumb for not being able to remember on their own.

Exercise is another area that can be hard for someone with dysautonomia. I am blessed that my condition is not very severe right now, and I know several people who are already much more progressed and are further limited than I. Our bodies are already running overtime doing simple things like standing and even sitting...so imagine how much harder it is to put your body in a situation like exercise that is strenuous even for a healthy person! Since going to rehab this summer and finally beginning an exercise regimen of my own, this area has taken a lot of mental adjustment for me. I completely would love nothing more than to be able to run and work out and get super fit and ripped....but that won't happen. And for a long time, when I would work out with friends, I felt like I was holding them back because I couldn't do nearly as much as they normally did. My entire work out was less time then one of my friend's warm ups. But I've realized that I can't compare myself to them. The amount of exercise I'm doing now is more than I've ever done in my 24 years...and I can tell I'm getting stronger. So even if it's not as intense, I'm still working to be as healthy as I can, and doing it on MY terms. This can be especially hard for people that were very active before getting sick, because now exercising too hard comes back to bite you pretty hard. So be patient, and don't patronize them for smaller workouts. Any workout is something worth congratulating them on, and took some good effort. 

Another big thing we have to deal with is temperature control. With dysautonomia, circulation in the body is pretty poor, so regulating our body temperature is a lot more work. And many of us, myself included, can't sweat at all so that makes it even harder to stay cool in warm weather. And consequently, being too cold makes me feel completely terrible, so I have to be careful no matter what the weather outside is. And there are random symptomatic days for me that are really bad. I can only equate it to having a fever - you constantly are hot then cold, then hot, then cold...back and forth all day, which is rather annoying. Layers of clothes have become quite handy, so I can more readily adapt regardless of where I am. 

One last area I will talk about is sleep. Insomnia is a chronic problem for us, which makes our already fatigued bodies even more tired! Our bodies are almost always in "fight or flight" mode, which makes it really hard to relax. And because of the poor circulation, moving around tends to be common. Think about laying down, trying to go to sleep, with your heart racing...not so pleasant, huh? And the fact that the nervous system controls sleep doesn't help the situation either. So it may get old to keep hearing someone say they're tired or didn't sleep well, but it's still just as true and even more annoying for us to say as it is for you to hear.  

Well, if you made it this far, I truly and sincerely appreciate it. Dysautonomia is not very well known, even in the medical community, so it's up to us to increase awareness!! Don't be so quick to judge a person by how they look, because they are a myriad of invisible illnesses. So try to see what that person is going through, and help them in ways that validate how they feel, and don't make them feel inferior. And when in doubt of how to help, just ask them! I guarantee they will appreciate that more than you trying to do something that you think is helpful when it actually makes the situation worse. 

I have been so blessed with an incredible support system full of family and friends who love me and want the best for me. And it really makes me happy when someone asks me questions, because it means they care enough to know more. But on the other hand, I have a lot of friends who don't understand and that does make it harder, and I know I am not alone in that. Yet another reason awareness is so important!

I love you all, and hope you are well. :)