Ass down, face up, that’s the way I like to… lie on the floor and stop myself from fainting.

And I lie there, a lot.

I also lie in my car, in my bed, and at my desk at work.  Standing, and some other things, cause my blood supply to to remain in my legs and limits the amount my brains gets.  Since our bodies are smart, the brain will protect itself and if it does not get proper blood supply it will bring the brain to the feet [RE: syncope].  So, at this junction, my body and gravity aren’t really friends anymore because I no longer tolerate its shit.  I spend most of my time cursing at it out loud and a fair amount of energy trying to counteract its power.  Which, makes me look like a crazy 30-something year old.  I wear old lady compression hose with shorts in the summer and sunglasses inside at work.  I’ve become that person.

As you have probably guessed by now I live with a condition called dysautonomia.  And since you’re here, I’m going to make the assumption that we share this syndrome or at least an interest in it.  In a nutshell, dysautonomia is what happens when the part of the nervous system that controls automatic functions (things that don’t require our thought to happen) goes rogue.  The Autonomic Nervous System is really in charge of so many areas of the body and this is generally why misdiagnosis occurs.  Because the Autonomic Nervous System effects heart rate, blood pressure control, body temperature regulation, pupil dilation/constriction, digestion, and bladder function, it has the power to create symptoms such as: tachycardia (fast heart rate), orthostatic intolerance (that whole bit about gravity), chills, sweats, tremors, trouble breathing, paleness, visual changes, confusion, migraines, lightheadness, fainting, dizziness, constipation, vomiting, chest pain, diarrhea and about 20 other issues.  Various forms of stimulation can cause a patient to become symptomatic such as: bright lights, loud sounds, raising arms above the head, exercise, standing, sitting, hot weather, cold weather, diet, and mild dehydration.

The nerve!  I know, I know- unwell and unfunny.  What a life.

But, I digress.  Dysautonomia is actually fairly common world wide.  Unfortunately, it is widely under diagnosed due to lack of professional knowledge and community awareness of its existence.  Awareness has increased in recent years and some patients are lucky to receive a diagnosis faster than before.  Prognosis ranges between minor inconvenience to becoming fully disabled and anywhere in between.  Treatment includes dietary adaptations, exercise therapy, compression garments to promote blood circulation, medications, and rest.  Etiology is still under investigation and there is no cure at this time.

I was diagnosed with dysautonomia during the summer of 2016 following YEARS of unsuccessful diagnoses, procedures, medications, and probably all the testing that modern medicine can offer.  As a nurse who works in cardiology, it was extremely frustrating knowing that something was wrong yet all my diagnostic tests would return negative results.  Only in the medical field are negative results usually a positive thing; but in the case of dysautonomia patients, these results usually push off proper diagnosis for years.  I am fortunate to have a physician who understands the disorder and a strong support system, but many patients are not.  My aim here is to help bring awareness to dysautonomia in the hope that others don’t need to experience what I’ve gone through.



Energy crisis

I’m having a brown out today, so to speak.  I was unable to attend work today due to my racing heart and dizziness.  See, when you are chronically ill you must rethink even the simplest of activities, like driving to work or the ability to walk to your desk.  Assuming that a person was once able to perform tasks at will, it is a fair expectation that they will need to adapt in order to adjust to their new “sick” life.  Prior to becoming ill, I worked a 40 hour a week job (on my feet), exercised at the gym following my shifts, saw friends, and loved to travel in my spare time.  Once I became ill my world became gradually smaller and more isolated, it continues to decrease its size today.

Several weeks ago, a coworker looked me in the eye and stated, “it must be nice to come in whenever you want.”  Those words cut me deep because the time I want to come in for work is 20 minutes prior to my shift start time; but some days arriving late is the time that I need to show up.  I am fortunate to have an employer that is working with me through this time in my life and allows me to “come in whenever I want” when needed.  What people do not see is a sustained heart rate between 120-180 beats per minute for most of the day; in essence, every activity became cardiovascular exercise once I became ill.  They are unaware of the temporary blindness I have when I stand, the shortness of breath, the “brainfog,” the migraines, the joint pain and the chest pain that stand in the way of my goals and relationships.  In a way, I am glad people are surprised once they find out I’m ill, or the severity of dysautonomia’s impact on my life.  It means people think I am capable and I know that is not a judgment that many disabled individuals are on the receiving end of.  We truly do not know what another person must endure, even if we are friends or lovers with them as we can never be inside of another person’s mind.

But, I cannot fool myself.  In a time where energy has become a luxury to me and I spend most of my free time alone I can’t help but long for my old life.  I wonder how my illness might hurt those around me who may think I no longer care for them, and that is why I must decline invitations for company.  Those assumptions could not be further from the truth.  I am angry with my body for malfunctioning and I wish for a stronger mindset to deal with new challenges that arise daily.  Those of us with a chronic illness understand that our energy is basically stored in a bank, and once we use our funds we need to rest.  We spend our energy wisely in order to accomplish the tasks that need to be completed, often sacrificing our wants in order to do so.  I typically reserve my wants energy for time with my husband, so that we can go places he would like to go to- even if it’s just out to eat.

Learning to live with Dysautonomia is not just an adjustment to increased fluids, sodium, and medication.  It is a whole life upheaval.  Relationships are strained, self-worth is threatened, and mental illness comorbidity risk increases.  The paradigm of treatment needs to shift to a more holistic approach that empowers every patient with tools needed to succeed within their new “normal” so that patients do not feel the need to hide their disorder but rather flourish with capability.  The medical field needs to do a better job of helping patients thrive so that they do not decompensate both mentally and physically.  There really is no better or more needed time than now.