A few weeks ago, I resumed active participation once a day in community safety walks for Tony with both Casandra and Emily. We had told Tony that I couldn’t run yet, and he was trying his absolute best to control his urges to sprint ahead. During our first walk back with Emily, she asked me a question while Tony was taking a few moments rest, seated with his legs crossed on the sidewalk.
“How much do you think you give to your family?”
I thought about it, and said somewhere around 85-90%. She countered me, saying that as she saw it, I give 100% to those I love. I told her that I saw moments that I pickpocketed out of my daily responsibilities to play music, do my makeup, work out, watch a quick video while doing dishes, which is why I didn’t really see it as 100%. And for all of that, I felt like my family needs more than I am capable of giving. As I see it, there isn’t any way I can really fill every unmet need for this family.
We talked about how she felt like I needed to take more time for myself, and I told her I don’t disagree with that in principal, we just don’t have the resources to make that possible. For years, I have burned every end of my candle I could fit a wick in and still watched it not be enough to give everyone I love the things that they need. I watch myself fail in some way every day, and I have learned to not flinch at my mistakes and shortcomings because they surround me with a greater familiarity lately than most of the people in my world.
Emily has worked more closely with me and spent more hours with our family than any other therapist. She sees and has seen things other people don’t see, and while I think sometimes she is generous in how she sees my failings in particular, I feel like her vision of me is one of the greatest gifts I have ever been given.
I have had no choice but to slow myself down for the time being. The week I noticed my standing heart rate had risen was a very difficult week for our family. All of Tony’s therapy was canceled and put on hold. I began doing what I could to slowly increase the time I was able to sit each of those first few days, when even sitting was raising my heart rate into the 120’s. Then I pushed to be standing and walking as much as I could before my heart rate went above 130, and it didn’t take much of that at first.
Once we switched out one of the antihistamines, things got a bit better, but it was still a delicate process of folding a few pieces of laundry and then laying down. Washing a few dishes and then laying down. Andy picked up community safety walks with Casandra and Emily, but his fear and worry for the future was a constant impetus on me to do more than pray fervently for improvements.
After the first cardiologist I saw indicated that my laying down to standing test indicated POTS, I did some reading and decided that very day I was going to be as proactive as I could about the cardio reconditioning and every other lifestyle change indicated as possibly being useful. I bought compression tights, and we raised the head of our bed 4.5 inches. I increased my salt intake. I planned my cardio progressions. I always prefer to start off with lifestyle changes, but in this case I had extra incentive because the medication he mentioned as being my only option since I now have a history of angioedema is nearly $600 a month with GoodRx, and it isn’t covered by our insurance.
We can’t afford that, so I was planning on having a discussion where I could hopefully make a strong enough case based on halter monitor data and my own tracking for why I felt like we could successfully start out with lifestyle changes based on where I was with my heart rate, which while still abnormal for me, fell short of going dangerously high for milder activities at that point. I can’t even tell you how thrilled I was to hear the cardiologist I saw last week tell me that my heart rate while laying down for the testing they did to examine my electrical signals was too low to allow me to be a good candidate for that particular medication.
I just looked at him and said, “Good, because I don’t want to be on it anyways.” And I don’t. But, what I have been doing takes time, and that time has to come at the expense of something, or in this case, someone. I have been leaving most of Tony’s hab hours I am responsible for unmet so that I could prioritize improving my current health condition, because I recognize that failing to address what is going on right now adequately would damage my ability to provide long term support to him and our family as a whole.
I have been varying the types of physical activity I do, carefully watching my heart rate and sprinkling in rests or increasing intensity as need be. I am taking two rest days a week. I put in a mix of activities that balance out floor based exercises with low intensity cardio. Yoga, Pilates, and Tai Chi. Interval training with my rower. My exercise bike. I track what my heart rate is doing, and as I have been noticing reductions in my standing heart rate or increased time before it spikes up during exercise, I have been methodically cranking up my intensity. I am doing everything I can to get more than six hours of sleep a night, but that is never guaranteed to me as our little man is still frequently awake in the night.
I have been taking more time to rest while reading or watching Netflix (currently working on “Madre solo hay dos”) or YouTube because I emotionally need a respite from the burn out pace of the crisis parade at this point. I even purchased an e-book that I started from Amazon, otherwise known as “the website that shall not be named” for the purposes of this blog, because I wanted to check out the entire book by this author and that is the only place it’s being sold. My issues are with the company’s polices and not the author, and when that is the case I am happy to increase my library accordingly.
I try to saturate every moment I can by listening to ASMR, positive affirmations, or something uplifting like Tercer Cielo while I’m doing my makeup. Luis Fonsi while doing laundry. Brene Brown’s podcast while tidying up or washing dishes. Shakira for reintroducing very light hand weights. Def Leppard while trying to increase my tolerance for climbing our stairs. My Andreas Vollenweider Pandora channel while rowing. Loreena McKennitt while I’m washing off my makeup and brushing my teeth. Secret Garden while trying to relax my mind before bed. Deuter to mediate. Whitesnake while I’m writing this post. The Weekend while I’m editing. If you’re expecting that list to make sense categorically, I recommend you refrain from trying. I like what I like, and that crosses a whole bunch of genres. But I do deeply feel the emotions of music, so right now I’m avoiding anything I like that has darker undertones.
And this past week, I resumed community safety twice a week four days out of the week. And we once again were able to return to public therapy this past Saturday with Tony. I have slowly begun to work in more of Tony’s hab hours that I cover into that schedule. Some rest activities will have to be reduced to support that, because I really don’t have a way to be personally balanced in the manner some people see it without reducing our son’s opportunities for growth. And in his growth I see the only path to my personal freedom to anything that looks like regular rest in the future. So each day I turn to pick up any wick I can handle and set a match to it, knowing it still won’t be enough yet to fill my unmet needs, or his, or anybody’s. But maybe someday. Maybe.
