What is Dysautonomia?
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.
As someone who has been diagnosed with Multiple Sclerosis for well over 12 years and maybe many more when looking back at some of the symptoms that I had back in my late teens and twenties, I have lived through more symptoms than I am able to count or even recall. I have always stood by the statement that vertigo is by far my worst symptom. There is just no work around for the sensation that your body is spinning while you are throwing up and unable to stand in an upright position. It's the most distressing situation to live through and I have had it chronically for months at a time. Unable to move off the couch. Unable to move my head at all without it throwing me into the spins. After years of some recuperation to that area of my brain that was damaged (the brainstem), I have been left with residual permanent dizziness. I am dizzy 24/7. The only thing that changes is the intensity of my dizziness. It's not spinning vertigo, although I do get bouts of that at times still too. My own body movements make me dizzy and nauseated. After vertigo, my dysautonomia comes in second place.
About two years ago, I began to have symptoms of dysautonomia. At first it was subtle. I felt "off" at times. I learned to start taking my blood pressure periodically. My blood pressure was dropping to the point of nearly causing me to pass out. When all of this began, I was on yet another new MS drug. I believed at the time that the new drug was causing my symptoms so I stopped taking it. Over time, my symptoms got increasingly worse. I got to the point where my heart rate would shoot up and my blood pressure would drop to the point of being unable to register on my blood pressure monitor. I also began having chest pain, shortness of breath, palpitations and I had also stopped sweating. My body's thermoregulation system is completely messed up as well. I go from being extremely hot to freezing and vise versa. I am unable to stand in an upright position for very long without all of these symptoms starting up. I take medication to help with my tachycardia (increased heart rate) and I take a medication to increase my blood pressure in the morning when I first get up. If I have to be someplace, I wake up hours before I need to be there in order to give my body adequate time to adjust to the medications. When I first wake up, my heart is normally racing and my blood pressure is nil. I feel like a limp dead flower. Once I take my medication, I can begin to feel the blood in my body start circulating and the feeling of being a dead flower begins to morph into a dead flower coming back to life. I begin to feel somewhat human again.
These autonomic symptoms are at the least very uncomfortable and at their worst, completely debilitating. I have many MS symptoms that I live with on top of these debilitating ones such as numb feet, pins and needles, muscle twitches, muscle spasms.... I could type out a very long list of symptoms which also includes going completely blind in my right eye and random stabbing nerve pain that jolts me like electricity but I won't list them all.
Because of my associations on-line, I know that there is a very large number of people, especially young woman, who live their lives from bed due to dysautonomia. Many of them call themselves "spoonies", based on "the spoon theory" that someone made up to try and explain to healthy folks what it is like to live with a debilitating chronic illness. Many people who suffer from POTS, which stands for postural orthostatic tachycardia syndrome and is a form of dysautonomia, are able to still function enough to live their lives to the best of their ability. Many are woven into society and are walking around with this invisible debilitating illness and no one would ever know by looking at them.
This morning as I read a post on Facebook from a young lady with a form of dysautonomia, I was deeply saddened. She wrote about how when she parks in the handicapped spot at a store, she will fake a limp in order to not be scorned by people that may verbally attack her for "looking normal" while parking in a handicapped spot. Many people "liked" her comment and not only did they "like" it, many admitted to doing the same thing! Oh my heart sank.... Not only because I am one of those people who doesn't look "that sick" and have been scorned myself for using a handicapped spot, but even more so because I've been on the other side of the coin and have been the person pre-judging others in my mind who don't appear to look as sick as me! If we would all be honest with ourselves, we would have to agree that we are truly wicked to the core without God and we need His help to recognize that. Well, that help did come 2,000 years ago and He is coming back again. Lord thank You for revealing my sin to me regularly but never condemning me for it. The good news of what You have already done for me (dying on the cross and living a perfect sinless life) unleashes the power to set me free from both my sin and condemnation. It relieves me of my guilt and shame. Thank You for Your forgiveness and Your cleansing. I need it day by day and moment by moment as I walk the path that You have established for me. Don't we all need Him?
Jeremiah 17:9English Standard Version (ESV)
The heart is deceitful above all things,
and desperately sick;
who can understand it?
