Travel | Chicago + NYC

I promised authenticity always. Are you ready?

Sean had work in Chicago this week, so we planned for me to tag along and stay the rest of the week in NYC with Tanya, Sean’s sister, before heading home. We have been looking forward to May all of April because we have so many fun things planned, and we couldn't wait to catch up with Tanya and for me to finally meet Lars, her boyfriend.

I was positive that this trip would demonstrate just how much I’ve improved. Partly it has, and partly it’s demonstrated that no matter how much you improve, no matter how well you’ve learned to manage it, no matter how much time (years) you’ve invested in toning your blood vessels, Dysautonomia life will never be easy, simple, or the ultimate luxury- without strategy. Can Dysautonomia life be good? Yes. Easy? No.

Due to my unrealistic expectations, I was shocked on Friday to realize there was no way I'd be leaving the apartment that day. I happened to have an arthritis flare in my spine and ankles, so the added inflammation and pain exacerbated the expected fatigue I was already experiencing from traveling. I awoke to more disappointment on Saturday when I could still barely stand from weakness. I had been hoping to recover in time to see Lars perform (New York City Ballet- an experience on my life bucket list).

Your autonomic nervous system literally processes stress. We tend to assign “stress” both a negative and psychological connotation, when in fact, stress is simply a medical term to describe all stimuli, physiological and psychological, that is processed physically by the autonomic nervous system.

There are two types of stress: distress and eustress. Negative stressors are designated as “distress” and positive stressors as “eustress.”

Healthy people possess the luxury of not knowing the difference, since in a healthy autonomic nervous system, it typically requires heavy doses of distress (pain, overworking, family/financial problems) for people to recognize the physical symptoms resulting from it. When they do, they notice that heart rate is elevated; maybe they sweat or experience migraines as blood vessels constrict. Those physical symptoms are a result of the sympathetic nervous system, the fight or flight system, activating in overdrive.

Unfortunately, Dysautonomia bodies experience that intense sympathetic response for every stressor, eustress and distress, regardless of how much we may be enjoying the moment mentally and emotionally.

It seems everyone understands and values the concept of limiting distress, but eustress is a foreign concept for the average person (including the medical community), as it would take a complete overload for their bodies to process eustress in the exaggerated manner a Dysautonomia body does.

I've noticed healthy people often confuse eustress with rest. Partaking of an activity they enjoy, like a walk in the park or coffee with friends, is considered “restful.” Enjoyable, yes. Restful, no. It's a wonderful luxury to not understand the difference, but rest and eustress are in fact separate entities and processed by the body uniquely. Healthy people would do well to comprehend the delineation and use it to their advantage during times of distress. If necessary or unavoidable distress exists in your life, you should eliminate unnecessary eustress and replace time previously allocated to that with rest. It's simple health science and logic that is often ignored or worse, devalued.

Contrary to cultural stigma, rest requires discipline because the average person prefers the mental stimulation of eustress, myself included.

I am blessed with the most compassionate friends and family who would literally sit all day on the couch with me when their schedules allow.

However, once I feel a crash coming on or if I've already crashed, such kind and selfless offers are not practical. My body has zero energy left to process eustress even in the form of hanging out with a best friend on the couch. I mean I can do it, but it's just going to delay my “recovery.”

I preach no shame in chronic invisible illness, and 99% of the time I live by it. Occasionally, when I am out of my element, or growing aware of an impending crash, I am embarrassed.

Everyone is understanding. Everyone is kind. Yet, the fact that being around other people, even in its most enjoyable moments, is eustress that my autonomic nervous system is overly sensitive to, is highly embarrassing to me no matter how much science validates that this is not psychosomatic.

I'm not embarrassed by the symptoms; I'm embarrassed by how I must recover from or avoid a crash. Realistically, at a certain point of stress on my body, ideally before symptoms get severe, I know I need to be isolated from any stimulation, positive or negative. There are instances when this is so severe that I cannot even watch tv or read to entertain myself. The only method to effectively rest my autonomic nervous system is to stare at a blank wall, empty my mind of both types of stress (meditation), breathe, get as horizontal as possible, and hydrate.

So when I crashed on Friday, I knew immediately how severe it was, and I also knew I needed to either get home where I could hole up for a few days or check into a hotel where I could do the same thing. My mom saved the day and booked us a room with her hotel points.

I have the most understanding and gracious sister in the world who had already given us her room and bed, who doesn't expect me to explain. Yet, who wouldn't worry that the need to be completely isolated from people and stimulation is off-putting?

You're essentially telling people that they are stressful… except that's the negative misconception I fear rather than reality. That possible misconception is my most significant fear in all of my relationships.

To me, social interaction is enjoyable and pleasant eustress, but my body processes it in sympathetic overdrive. I would do anything to change this, but it is the reality of my malfunctioning body, and the source of my greatest insecurity.

So here's where strategy comes into play. Since my quality of life has improved so much, without recognizing it, I believed that I would no longer be sensitive to eustress while traveling.

I know now, when traveling, I need an option for complete isolation which hopefully, just like at home, I can practice in small doses to avoid the kind of crash that happened on this trip.

Sean and I both tricked ourselves into believing I could handle the eustress of being a houseguest.

Sometimes, when you want something, you ignore the facts.

We both want to travel more, and being a houseguest financially makes frequent travel feasible. It was a lovely little dream.

Reality: I added the stress of travel while simultaneously eliminating my primary management system- an isolated home base. And I expected this to be the best trip of my life. I'm genuinely laughing reading this- that is the most unrealistic, illogical fantasy.

This travel thing is going to be great, and it's going to be a major facet of our lives. We are not giving up the dream. We’re regrouping, and like everything else we’ve handled as a team, Sean and I will improve our strategy for the next trip.

Moral of the story for my Dysautonomia friends: 

Don't neglect your desire to travel or do anything else that seems impractical given your circumstance. Go for it! But don't pretend for one second that you can leave strategy at home.

There's vacation from home; there's no vacation from Dysautonomia. Don't trick yourself into believing that your body will play by different rules once you're on vacation. The more we can practice full acceptance of our reality, the more we can realistically strategize to enjoy many of the experiences this beautiful life has to offer.