October is Dysautonomia Awareness Month. I want to make one entry to share some helpful information regarding Dysautonomia, because it is something that I deal with on a daily basis. Dysautonomia Autoimmune Disorder causes autonomic dysfunctions in the body. Your autonomic nervous system is what controls heart rate, blood pressure, temperature, digestion, all the things that take place in our body without us having to think about it for it to occur. Dysautonomia is a disruption in these functions. I have neurocardiogenic syncope. Which is a fancy way to say that I am prone to fainting. It is a lot like having POTS which is what I normally tell people to make it a little easier for others to understand. My brain misfires signals to the autonomic functions of my body and that causes me to have blood pulling, lowered blood pressure, elevated heart rate, and extreme anxiety when I feel the symptoms coming on. For myself, slight changes in how I sit, medications I take, and how quickly I move my head can create a significant change in my autonomic function. This will often lead to fainting or feeling really “off.”
Before I was diagnosed and was seeking answers, I was often told it was my anxiety and/or stress. How can anxiety create me to faint more than 15x in a 3-day period? It didn’t make sense. I had to really seek answers, and I am thankful for a friend, Renee, who had the knowledge to know that there was more going on. She set up an appointment with a cardiologist that she once worked for and he was able to diagnose me. And that came with a lot of strong emotions and floods of tears, as I was finally heard and understood. I have a name for what makes me feel terrible more days than not.
One thing said to me often is that I don’t look “sick.” And while I am not really sick, I have a lot of physical issues I deal with on a daily basis and they are not fun. Extreme fatigue and lightheadedness are the two that plague me the most. It takes a lot to get out of bed or to not nap throughout the day. The exhaustion is unbearable at times, but as far as sleep apnea and other issues that can cause fatigue, I do not have any of those concerns, tests are normal. (Normal, that is how all test results come out when dealing with dysautonomia.) So, while I may look and act like I am feeling well on the outside, on the inside I am miserable. I have learned to mask how I feel. Majority of people don’t want to hang out with the complainer, and I am determined to not allow my illness to define who I am. Andrew gets the bulk of the complaints, but even then I don’t say a lot. He worries enough about the fainting and sickness as it is.
Chronic illness is not fun. It takes away the things that I find important in my life. Like the energy to maintain a clean house. There are weeks that may go by where I don’t have the energy to clean. Spending time doing activities I love takes a lot of effort. I love hiking to watering holes but the last hike I took, I never made it to the waterfall, and it felt like it took an eternity to get back to the car. Every step led to high heart rates, low blood pressure, dizziness, and a need to lay down every 15 minutes and put my feet up until we made it out. While I cried, Andrew held my face and said not to worry but to enjoy the journey out. Sometimes guilt plagues me because I am not able to do the things I once was. A new normal has had to be established. I am doing much better with acceptance, but I still grieve opportunities I cannot take because of fear of how my body will handle the activity.
I am thankful for dysautonomia. It has caused me to cry out to others I trust to walk this journey with me. I have cried many tears with my counselor, who understands chronic illness. It has made me get to a place where I am having to rely on God a little more to get me through each challenging moment that I face as a result of illness. I have learned to really lean into the help of a husband that loves me so much that he is now the cook in our family, and house cleaner, and laundry washer. He takes care of me and ensures that I am okay. He is there to catch me when I faint and sits with me as I recover. I am incredibly thankful for him.
This journey has not been easy. And there are so many chronic illnesses that people face on a daily basis. Know you are not alone. Know that it is okay to take one moment at a time and to focus on listening to your body. You are not lazy, and you are not messy. You are learning to work with what has been given to you. Decide to still enjoy life within the confines of your ailments. I would rather live life then live in misery. It’s okay to cry out for help and to seek counseling to help you manage the emotions that come from being sick. Remember you are not alone, there is a God who sees you, hears your cries, comforts you when you don’t realize it, and wants to be the center of your life. He is for you and not against you. Your experience with this may be a testimony of help to someone else experiencing the same thing.
Reckless Writings 