Published: 13/10/2018

Pacing myself with POTS and hEDS

by Deborah V.

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 what contributing medical disorders impact my body. As with many of our readers, I have a complicated medical history. It’s complicated as my hypermobile Ehlers Danlos syndrome (hEDS), with joint subluxations, dislocations, and instability is extremely progressed compiled with many of the secondary disorders related to EDS. In addition, I have Myasthenia Gravis and dysautonomia (POTS). The balance of medication, symptoms, and activities can be extremely challenging. Especially as I am a natural “overachiever” who desires to do so much more than this 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 my children, I learned something. I learned that my children are sincerely concerned about me dying. The impact of passing out episodes, frequent hospital visits, surgeries, and physical deterioration has taken its toll on my children and my 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 toward “pacing myself”. With all my conditions, “pacing oneself” is extremely important. That being said, I have always associated “pacing” as an evil word, even my enemy as it, to me, used to mean giving in to my body and giving in to my disorders. For decades, I believed in pushing my body and self to do all physically and mentally possible–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 rethink the impact this methodology has on my children. As in the words of one of my children, 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 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 write to remind all those with dysautonomia related disorders 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 that we sometimes need to take a step back and look at ourselves from the eyes of our loved ones.

For they may see things differently. They are the ones to find us unconscious, worry we may be unconscious in the back of a Lyft/Uber car, 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 that 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 fluids. What are you going to promise to yourself or your loved ones for Dysautonomia Awareness Month?



Virtual Support Groups

Let’s Chat

Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

Related Stories

View all Stories

Sign up to The Ehlers-Danlos Society mailing list