Resting to manage my illness has been a hard practice to maintain since becoming a mother. But it has also been an incredible gift.
This article was originally featured in the online magazine Woman Born on May 7, 2019.
As a mother, I sometimes don’t have as much patience as I’d like.
The other night when I was making dinner I could feel my blood pressure start to drop and I was getting a headache, which makes me irritable and spacey. I was racing to get dinner done so I could sit down and relieve the blood pooling in my legs. Reese, my five-year-old son, really wanted to help grate the parmesan on the box grater for the risotto. But instead of being patient and showing him how he could safely help out, I told him that I needed to do it this time. I’m not feeling well, buddy. I just need to get it done this time. You can help another time, I told him.
Unfortunately, incidents like this happen more than I’d like to admit.
It’s because I live with a chronic illness—an autonomic nervous system disorder called dysautonomia. This is a broad term that describes a malfunction in the autonomic nervous system, which regulates various involuntary body functions including breathing, heart beat, digestion, and blood pressure (among other things).
In my case, dysautonomia has severely affected my body’s ability to raise and regulate my blood pressure, which means that I am at a near constant risk of fainting or severe illness (think headaches, dizziness, disorientation, trouble speaking, blurred vision, irritable bowels) when there’s a lack of oxygen in my brain. Dysautonomia affects my life the most by making it very difficult to stand for more than ten minutes at a time (on a good day), as my blood pools easily in my legs and my autonomic nervous system is unable to communicate with my cardiovascular system to increase my blood pressure and get adequate blood flow to my brain.
My body produces high levels of cortisol and norepinephrine to keep my body upright when my blood pressure levels begin to dip suddenly or decrease throughout the day. This results in extreme exhaustion and what some may call “adrenal fatigue.”
Since being diagnosed at age 18, I’ve tried a wide variety of methods and medications to manage and control this illness. I’ve been on beta blockers, steroids, and vaso-pressors, but ultimately the best methods I’ve found to help me function include taking doses of salt tablets every hour and rest. The salt works to temporarily raise my blood pressure, while rest means staying off of my feet and taking naps. Focusing on nutrition, fitness and self-care was always a non-negotiable daily priority. Then I became a mother.
Making accommodations for my illness doesn’t jive with the unpredictable nature of motherhood.
When you have a kid, most things tend to revolve around what they need. Parents often fit taking time for themselves and for one other in between or after their kid is taken care of. Feedings, nap times, doctors appointments, meal prep, preschool, laundry, and playtime all leave little time for self care. So happens when a my own medical needs must also be prioritized with equal weight?
It was easier to manage when Reese was a baby. I was able to stay at home with him until he was about 18 months-old. And while I was exhausted, constantly hungry and distracted from breastfeeding and caring for an infant, the upside was that he had a regular nap schedule that I could count on to get some rest for myself.
I was definitely not one of those moms who cleaned the whole house or ran business meetings while the baby napped. Come hell or high water, if Reese was down for his nap, so was I. I knew that if I didn’t take the opportunity to put my feet up and rest, then come the“witching hour” I would be feeling very sick and could possibly faint.
“I was definitely not one of those moms who cleaned the whole house or ran business meetings while the baby napped.”Like most moms of young children, my daily routine revolved around Reese’s nap schedule, but I approached this rule with dedicated fervor. If Reese missed a nap, I too would have missed my opportunity for the day to rest, recharge, allow my blood to evenly distribute throughout my body once more, and to feel well again.
I made sure to schedule all playdates, outings, or gym workouts in the mornings when I felt the healthiest. But when other parents might’ve extended their day out with their kids to get some errands done or have more fun, I had to put my foot down and make sure we got home on time.
While hard to be different, I realized there was an upside to all this.
Becoming a mother taught me a valuable lesson in learning to advocate for myself and to myself. I stopped apologizing or feel guilty for prioritizing my own self care.
I soon realized that if I was feeling happy and healthy, that meant that I was able to be more attentive and responsive to Reese, as well as a better partner to my husband, Frank.
This comfortable routine of self care I had established, however, was completely upturned when I went back to work. In the past, I was not very good about communicating with my employers about my medical limitations since I was scared that it made look weak, unreliable, or worse, unemployable.
With the frequent travel and long days that come with my work in business development, I would often push myself way past the point of breaking, which caused me to go straight to bed when I would get home from work or spend most of the weekend recuperating. Clearly, I was going to have to rethink my approach to work now that I had this new-found respect for myself and a family to take care of.
While in the end I still had a significant amount of days when I’ve felt very sick, I was able to create a work schedule and work-life balance that helped me be better at both. Some days were great and some days were horrible, but by experiencing enough bad days, I eventually learned to give myself a break and do things like order take-out for dinner or put a movie on for my son while I crashed on the couch.
Still, some things I’ve had to give up altogether.
Anyone with a chronic illness will know this all too well—it’s mostly manageable with a daily routine and a predictable schedule. It’s the days when your routine is disrupted and your plans are tossed to the wind that are the most challenging. For example, something as joyful and exciting as going to Disney World as a family is something that I immediately begin to dread the thought of.
We took Reese for the first time when he was three years old, and within the first hour I was very sick. I had to seek out an empty bench to lay down on. I suffered through the rest of the day, but I so badly wanted to just have fun and enjoy the experience. Instead, I was anxious about standing in long lines and what it would do to my blood pressure. By the time we left, I felt more sick than I think I ever have, and for the next few days I was so exhausted that I had difficulty completing simple tasks.
I have to face the reality that in the future I’m might not to be able to join my family for all-day experiences like Disney. This reality bums me out. I love museums, aquariums, and theme parks, and I want so badly to share these things with my son and husband. After our Disney experience, my husband suggested that next time I should rent one of those motorized scooters to get around. I’m not quite sure what to think of that.
As a mother with a chronic illness, I’ve learned that I have to let go of the many ideas I had about what a “good mom” should be.
My energy and wellbeing is a precious commodity, and I’ve had to learn to accept my limitations. I won’t always be game for a big craft project or an all-day outing that requires me to be on my feet for hours at a time. I have to learn to be okay with that.
I’ve learned to let the television be an ally when I need it to be, and to let go of the guilt for letting Reese have more TV time than he probably should when I need to rest. I’ve had to become comfortable with asking for help when I need it, and to not be afraid that it makes me seem incapable or weak. But rather, there is strength in that vulnerability. I’ve learned how to cherish taking time for rest.
I’ve had to learn to trust that the love and attention that I am able to give my family is enough, that quality is truly better than quantity. ”All these things have given me a whole new outlook on life. It is truly sweeter when we can slow down, learn to be comfortable in the pause, and rejoin the flow when our bodies and minds are ready.
In a way, my dysautonoia has become my own unique gift to my family, with my body as our constant reminder that life is not all about being busy and productive. Family afternoon naps on the weekends have become one of our favorite little traditions. I’ve had to learn to trust that the love and attention that I am able to give my family is enough, that quality is truly better than quantity.
And one day, I will teach Reese how to grate parmesan on a box grater. It will be at a time when I am well enough to teach him.