“Mama!”
I heard Hannah call out this fearful exclamation as I slipped down the last four stairs in our house, emotionally crusted over from I can’t even begin to tell you how many sleep deprived middle of the night escapades with Tony. My physical reflexes were often slightly impaired and set to spastic that early because I hadn’t reached caffeine yet and it’s pretty difficult to function on so little sleep and look normal without that.
I was clutching one of our air purifiers. I usually took one of them upstairs to run in our bedroom at night to help reduce my nasal allergy symptoms. Andy hadn’t been enthusiastic about spending the money on them last spring, but I felt like it would be beneficial in my efforts to do everything I could to preserve as much of Tony’s therapy programs as possible during the pandemic. And on the morning I fell, we had only owned them for a few short months. So, in a moment of concern over his reaction should one become broken, I made the poor choice to wrap myself around the purifier instead of letting it go and positioning myself for a safer landing.
I hit my head hard enough to cause dizziness and ringing in the ears, and I landed on my back across three of the stairs, injuring my lower back and causing two stair imprint lines of bruises to run across the upper portion of my back. I also mildly sprained my left foot (minimal swelling, barely any bruising), which only a few months later would be reaping the interest of that initial injury. Hannah very sternly told me I was in no shape to be taking Tony on a walk for at least a day, and the memory of her love and concern shined a healing light on my emotional state if nothing else.
I did restorative yoga, stretching, and gentle body weight strength training exercises to rehab my back. I was just getting to the point where my back was healed enough to start working back into strength training when I sprained my left foot in January, this time with bruising and swelling so nasty I wasn’t entirely sure if conservative treatment alone was going to be enough to heal it, though I felt that was where I would prefer to start just in case luck had favored me (and it apparently has there at least). And then came anaphylxis, a root canal, POTS, thrush while I was on prednisone…
Whew. Sometimes it feels like once I get on the injury and illness merry go round, the velocity presses into my sides, fuses me to the center, and keeps me on that ride far longer than I want to be. As a child, I always liked merry go rounds. I wanted to love them, but I was more in love with the idea of them because I would see my classmates squealing with laughter on them. I, unfortunately, suffered from motion sickness to the point where my parents were sometimes having to pull the car off to the side of the road so that I could get out and vomit.
So if I got on a merry go round, I was happy just for a short period of time, which was why I could only like them. Sometimes the spinning would go on for far too long and I would close my eyes and work at communicating internally downward a need to be calm to my stomach. As I got older, most of my motion sickness muted enough to become another relic of my past, and I haven’t needed medication for it since my childhood. Sometimes these days if I am swinging with Hannah at a park, I can only tolerate about 10-15 minutes, but car rides and amusement parks with short burst of rides are no big deal for me right now.
May 5 
May 6 
May 7
When I purchased the book I recommended last week, it had just been released and I had just been told that the difference between my laying down to standing up heart rates qualified me for a diagnosis of POTS. I had no idea how long this particular condition was going to leave me on the rehabing it merry go round, and I was thinking it might help me feel less alone in the world to read the words of another person with experience living in the chronic illness playground. I knew that much of my strategy for moving forward would be in carefully managing my own mental health, and I knew that limitations to my physical activity combined with some of the changes that could be required to accommodate my new allergies would be adjustments that would come with grieving and moments where I felt downright unenthusiastic and even bummed out about all of it. Part of managing that for me is listening to the words of others who are on a journey that can possibly teach me something about how to be more graceful in the navigation of my own individual challenges.
Right now I feel a bit as if I’m feeling my way forward through the dark with some of this. My former cardiologist’s staff didn’t feel comfortable seeing me for further testing to rule out any other heart conditions because of Andy’s job. He is sometimes what we would call frontline in this country. My husband will not refuse to treat COVID patients and I am proud of him for that, he has my support and we follow all of the recommended safety guidelines for healthcare workers. I live in a large enough metro area that I feel like I can acknowledge that this is one the things I am struggling with as I try to get off of this merry go round without automatically making it obvious who I was seeing. For me, it is still very uncomfortable transferring to a different doctor because that person will almost certainly know my former cardiologist so I am waiting to see how much resolution I can get on my own, and initially I had been thinking, well, this isn’t too big of a deal for me because I’ll drop into Ornish’s diet. Unlike conventional western treatment for heart disease, Ornish’s program can actually lead to reversal.
The last set of testing has shown that this may not be doable for me with my newest food allergies. I tried lentils at home (since they weren’t on the test), and broke out into hives even on an antihistamine. I will be going through all of the bean types, but unless you can avoid meat and heavily limit your dairy, Ornish’s diet isn’t an option. That realization was definitely a harder thing for me, where I looked at this merry go round ride and felt that it had certainly failed to produce merriment, plus I wasn’t sure I could find it likeable even. I loved being a vegetarian, and I have had to work hard on my emotional self-care these past few weeks.
I still don’t entirely know what I want to do about all of this. My standing heart rate is slowly going back to being closer to normal for me (my current standing heart rate is also now within normal for medical standards in the US), but there are some caveats. I’ve weaned myself off of the compression tights, but I’m still adding way more salt to my diet than before and needing to avoid caffeine. My heart rate is also noticeably lower after eating fibrous vegetables.
My heart rate still goes higher than it should or than it used to for some activities, but the chest tightness and shortness of breath are improving, but sometimes they are still present. Doing short sets with 25 pounds is currently sending my heart rate above 130. Climbing to the second floor of our house via the stairs three times back to back still puts my heart rate above 130. But for the first time last week I was able to start using the arm peddles on my exercise bike again and have my heart rate stay stable in a desirable range (though still higher for me than it used to be, it is a respectable rate for a woman of my age). I can do a slow jog for 150 steps before my heart rate goes above 120, though it goes up way fast and way too high if I pick up more speed. Those last two items though are big improvements in my autonomic nervous system’s ability to regulate my heart rate with activity.
I have no idea what the rest of this POTS ride is going to look like for me or if I’ll be able to get off of it entirely. Some people can. The allergies have been a lifelong ride, though the challenges change with that from time to time. But I have recovered enough functionality to feel like I can find peace with my activity level. The food is still going to take some time to get there, especially since I can’t rehab my way off of that particular merry go round.
