This week is Invisible Illness Awareness Week. Many people that you never would of guessed probably live with an illness that seems to be invisible.
Invisible disabilities are chronic illnesses and conditions that significantly impair normal activities of daily living. In the United States, 96% of people with chronic medical conditions show no outward signs of their illness, and 10% experience symptoms that are considered disabling.
A little over a year ago, I found out that I have Dysautonomia. In this post I am going to tell you about Dysautonmia, POTS, and my life with both of these. I am not writing this post to find sympathy from others, but to find awareness for the disease. I hope and pray that my story will reach out to others and maybe give some type of answers to someone who is feeling unwell but does not know the causes. Also, I am hoping that these diseases will become more known in the medical field and just through out the world.
For as long as I can remember, I was always what I thought was "out of shape." My family was constantly telling me that I was "lazy and not athletic."(sorry mom, had to put that in there) Even though to some extent I was those things, I really was not "lazy" and I did not know how to explain how I felt or how to convince my friends and family that I was not just choosing to lay around. I have always hated running. Not because it's not fun but because of how it makes my body feel afterwards. The only term that I thought described how I felt was "out of breath." Not only did I feel this way about when I ran, but also walking up or down stairs. I can not even think about how many times we went to my pediatrician to see why I felt this way. Once, we found out that I was anemic. My iron levels were insanely low from not eating meat. For a short period of time, I did feel better with the iron pills I was not completely well. I still had periods of time that I had no energy. I'm not sure if this is completely true, but I think I was at my pediatrician for a physical or maybe to see if I had asthma but what I do know is they had me go outside to run 4 laps around a small section of the parking lot. I could not do it. With everything in me I could not go more than 2 laps. I was so hot and weak and about to pass out and I couldn't breathe. So they took me back inside and told me to go see a lung doctor. So I went to see a lung doctor and they said I was fine. Then we went a few years without knowing anything else. Then God spent the wonderful Mrs. Lisa into my life as my Sunday school teacher for a few years. After she had heard my prayer requests for awhile, she came to talk to my mom and me about possibly going to see the doctor that she sees for Dysautonomia. Well comes to find out that you had to be at least 18 years old to see her and I think I was around 16.
Around this time last year, I went to go see the neurologist. I got an ANSAR test done. This is a test that measures your blood pressure, respiratory activity, and the way your heart rate changes to activity. The results were instant and she was like "yep you've got dysautanomia" I was so happy but also upset. I was so so happy that we were finally getting answers, but also upset knowing that things in my life might have to change.
Here is some back ground information: Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.
The Sympathetic Nervous System is commonly associated with the "fight or flight" responses - those bodily reactions that you need to respond quickly in an emergency. When faced with a life threatening situation, your human instinct takes over and you either fight the danger you are facing, or you take flight and run away from the danger. Your Sympathetic Nervous System allows your body to do this rapidly.
The Parasympathetic Nervous System is commonly associated with the "rest and digest" responses - those bodily actions needed to restore energy and rest the body.
When we were talking with doctor about everything all I could say was "yes! yes! yes!" Everything she was saying made so much sense, she was saying and using terms that I had been looking for, for so long to describe how I felt! Here is an example that she likes to use to explain how we feel to people that are having a hard time grasping it.
So you (a person with dysautonomia) wakes up in the morning after a great night of rest and you get up to go take a shower. When you're taking your shower you end up just standing there in the water for a little while because you are getting tired and weak from washing your hair and body. So then you get up the energy to finish your shower then when you are done you are so exhausted that you go a lie down. But you don't even have much energy to get dressed first so you just lie down while still wrapped up in your towel. Then you start getting really really cold but you just don't have energy to cover yourself up but also you don't even have enough energy just to call out for someone to come wrap your up.
This is such a great example of how we and I feel on a normal daily basis. Sometimes it is not to that extreme but it is a good representation of how this feels like. My sympathetic and parasympathetic systems are all out of whack. My sympathetic is doing too much and the parasympathetic is not doing enough. My adrenal gland is always, constantly in over drive. No matter what I am doing, lying or sitting, my heart and my adrenal gland is sending out adrenalin like my body is running a marathon. Consequently, when I actually do get up to do something I don't have enough adrenalin to help me because my body used it all when I was sitting down doing nothing. Also, upon standing my blood pressure drops a lot lower than it should. This is called POTS. This is when the blood pressure changes drastically upon the change of position like sitting, standing, to lying down. Also, my heart rate at a normal resting pace is around 110. The average for a normal healthy person is 60. 100 for when they are active. I usually have to get no less than 8 hours of sleep. I work best on 10-12 :) I know that's a crazy amount of sleep, but I can not physically function without at least 8 hours of sleep. This is very difficult as a college student when most of my friends like to do things at night. If I have a busy day I usually do not have the energy to go out and do anything with my friends. I feel like most people think that I'm just a flake but I'm not, I just can't physically get up to do anything.
Thankfully, once I am done growing around the age of 25, I will out grow this!! At this point, my doctor will not allow me to work over 4 hours because I can get tired and week. I can not wait till that day when I can work and do activities without feeling weak. I have always thought about what it would be like to still have this when I get married and have kids. Props to all the mothers out there that have to do this, it has to be a struggle to not only take care of yourself but also your family even when you feel weak.
I hope that post has taught you some things about this disease. Unfortunately, not many people in the medical field know about this but it is slowing starting to be known. Help me in raising awareness so that there can be found a cure. October is Dysautononomia Awareness Month, help us find awareness! You can learn more about this at http://www.dysautonomiainternational.org/index.php and also http://www.dysautonomiainternational.org/page.php?ID=30. If you have any questions about my story or about any of this, please feel to comment below or email me at stephanie.metaxas@yahoo.com
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