The October Slide

There it is, that all too familiar sound once again. With the knowledge that there is little I can do but hold her hair out of the way and gently rub her back, I jump to my feet. I am at a loss to help her, but at least I feel like I am doing something. I wait for her to finish so I can empty her metal trash can and disinfect it. I have lost count of how many times I have done this in the past few hours. She looks up at me from the floor with her dull, darkened eyes as her lifeless voice mutters, "I feel like I am dying." Hearing those words prompts my heart to sink a little further. I personally know her pain, but I am helpless to remedy her suffering. Somberly, I reply, "I know, Sweetie."

These episodes always seem to begin late in the evening. Jakers and Georgie, two of our furbabies, hear the unnatural noises coming from Jayde's bedroom at 2 A.M., and they come to investigate. It is like a distress signal. They are there to comfort her, remaining by her side as she alternates between her bedroom and the bathroom floor. I follow back and forth, cleaning up after her and preparing for the next round.  As she looks down at her wrist, I ask what her heart rate is. "I don't know, it won't register." This means that her heart rate is high, and her Fitbit is trying to recalibrate, thinking her current heart rate is an error. This is not an uncommon occurrence. When it finally registers, her heart rate hovers in the 170 to 180 range. 

Suddenly, the realization of what is happening sinks in. This year, "it" came early. Typically, "it" happens between her birthday, October 23, and Halloween. Last year, it started two weeks before her birthday, peaking the day of her birthday and leaving her bedridden for two weeks. The "it" I am referring to is what I named the Fall Flair. It sounds like it should be a formal party or something spectacular, yet it is the furthest thing from a party, and each year, it seems to get worse. The medical community has termed it the October Slide. With POTS, there is always a waxing and waning of symptoms. During the fall, it seems these symptoms take a turn for the worse and are more present than usual. Hence the name October Slide.

I should have realized her flair made an early arrival after she fainted a few days ago. Fainting is a telltale sign her POTS is not under control. However, I was optimistic Monday morning when she felt well and noticed her coloring was near perfect. In the afternoon, Jayde arrived home from school in a great mood, telling me about her day. She was her happy self, and her cheeks had a natural peachy hue. Three hours later, around 6 P.M., she went back to her room and collapsed with a severe migraine. Now, in the darkness of the early morning, her face is a ghostly shade of white, and her body is listless. What a difference a few hours can make.

It is a few minutes shy of 4 A.M., and there is a brief lull in Jayde’s sickness. I sit in my bed listening, fighting the heaviness of my eyes, resisting the urge to fall asleep, pondering the last sixteen years. I begin remembering other incidents, posts I made on Facebook eight years ago, six years ago, etc. Separately, all these pieces equate to a little girl who has been sick an awful lot. More than I even realized. However, when lined up side by side, you see the handiwork of her illness, realizing POTS has been with us almost as long as she has. I remember the week leading up to her first birthday, wondering if we would have to cancel her party because she was sick. I remember postponing or canceling a few birthday parties and missing several holidays, special events, and trick-or-treat nights over the years. Although, after a while, all those events seem to run together. 

It is quiet. Thankfully, Chris and Brady have managed to sleep through the entire night. I must have dozed off for a few minutes because when I last checked the clock, it was 4:42. Now Chris is up and taking a turn rinsing the trash can and taking care of our Baby Girl before he heads off to work. I lay in bed somewhere between asleep and awake, able to hear them but not able to move, thankful for the brief help.

It is now a few minutes after six, and Jayde places her trash can on Chris’s nightstand and crawls in bed with me. While the past seven hours have felt like an eternity, I breathe a sigh of relief, knowing the end is potentially near. Like so many times before, she magically and peacefully falls asleep once she is in our bed. I recheck her heart rate, it is now 127 bpm. While it is better than before, it is still too high. Especially given she is sleeping. I dare not move or get out of bed. I eventually doze off, secure in the fact that, for today, the worst is behind us. I hope.

According to the Dysautonomia International website, “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.” 

It is plain to see, when reading the proper definition, why POTS and Dysautonomia are termed invisible illnesses. From this mother’s bloodshot, sleep-deprived eyes, my daughter and her disease are anything but invisible. I marvel daily at my precious daughter’s strength. Jayde was a fighter before she took her first breaths, and she continues to be a fighter. October 1st will usher in Dysautonomia Awareness Month. Most individuals cannot correctly pronounce the word, let alone know of its existence, but I can attest it is as real as you and me.