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Why I Need to Practice 'Pacing' As a Parent With Dysautonomia

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For some time now, I have had significant challenges managing my “loss of consciousness” episodes. I have known, as any parent does, that these episodes do affect my children and husband. I did not, until recently, realize to what extent.

Before I tell you about this latest discovery, let me first explain the contributing medical disorders that impact my body. As with many of our readers, I have a complicated medical history. It’s complicated as my Ehlers-Danlos syndrome (EDS), joint subluxations/dislocations/instability has progressed significantly, and is compiled with many of the secondary disorders related to EDS. In addition, I have myasthenia gravis, dysautonomia and POTS. The balance of medication, symptoms and activities can be extremely challenging. Especially since I am a natural over-achiever who desires to do so much more than her body allows. I frequently tell people my body and brain are in a constant battle; more times than not, the body wins.

Recently, as I sat with my children in their doctor’s office discussing what impact my disorders have on them, I learned something. I learned that my children are sincerely concerned about me dying. The impact of episodes of passing out, frequent hospital visits, surgeries and physical deterioration have all taken a toll on my children and husband. As I sat there listening to my son, I could feel my heart break for all the pain he is enduring watching me in pain and battling the symptoms of my disorders.

I made a resolution to him to work towards pacing myself. With all my conditions, the concept of “pacing” is extremely important. That being said, I have always associated pacing as an “evil” word– even my enemy—since to me, it means giving in to my body and giving in to my disorders. For decades, I believed in pushing my body and self to do all I could, both physically and mentally. At times, to the detriment of my body. I still believe in pushing myself to do what I can today, as I do not know what limitations lie in my future.

Sitting there with my sweet boys, I had to pause and re-think the impact this methodology has on my children. As my children expressed, they have been traumatized by all they have seen me go through. For so long, I pushed myself to enjoy something while I could. Now, however, I need to make sure what I do is within the parameters of my abilities. As a parent who is significantly impacted by multiple disabilities, I now need to think of my family too. I need to choose activities wisely and do all I can to prevent POTS episodes.

This is easier said than done, as I have lived by this methodology for decades. It allowed me to pursue experiences I am unable to do today or likely ever again. I’m here to remind all those with disorders related to dysautonomia or other chronic illnesses that we do need to pace ourselves. If not for our own body, for our loved ones who must watch from the sidelines while we deteriorate before their eyes.

I tell you this as a person who has never wished to pace herself. Sometimes we need to take a step back and look at ourselves from the eyes of our loved ones. They may see things differently. They are the ones to find us unconscious, worry we may be unconscious in the back of a Lyft or Uber, or receive the call saying, “she is unconscious again.”

This month, I made a promise to my sons and husband that I will not pull “all-nighters” in preparation for activities, and I will try and pace myself more. I will partner with others in activities I lead. I also promised to be more vocal about my needs, something I did not do a few weeks back that played a role in a recent episode resulting in a visit from paramedics. I am promising to pace myself, take better care of myself, listen to my service dogs’ warnings early on and drink more. All of these things can help with managing life with dysautonomia and rare, chronic conditions.

What are you going to promise to yourself or your loved ones for Dysautonomia Awareness Month?

Originally published: January 22, 2019
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