more good news than bad.
An update after a week of bed rest.
If you remember from last week, I’m trying to keep my HR below 106 right now, in following with my ME/CFS specialist advised. The hope is that if I commit to bed rest, over the next 6-8 weeks, it will give my body the best shot of recovering from this relapse.
Was I able to keep my exercise zone minutes down this week?
Yes. I cut my zone minutes in half this week. That’s a significant drop! It’s still crazy bananas that doing the bare minimum means 39 minutes of exercise per day but that’s ok. It’s a process of learning how to work with my body.
The vast majority of my zone minutes (60%) were for personal hygiene related activities, mostly seated showers but also brushing teeth, washing my face. If you must know, also plucking my one stubborn chin hair on Tuesday.
The remaining zone minutes (40%) totaled less than 2 hours and a mix of two things: unavoidable activity and choosing to be active. Unavoidable reasons are things like heating up food, getting snacks, filling up my water, or tucking kids into bed. The activities I chose this week were visiting my sister-in-law, moving from my bed to the couch a few times, curbside food pickup, curbside COVID shot, haircut in my garage, and folding laundry while sitting.
Pause for story time: I did opt to join my sister-in-law for her birthday even though I probably should have said no. She and her wife planned a little fall cookout on their back porch, only a few miles away. The guest list was me, the kids, my former husband (her brother), and their dog, Louie. Everyone ensured I had plenty of accommodations to make it possible for me to attend including good parking, comfy seating, and being waited on and hand and foot. What I love about our unusually cooperative coparenting relationship is that this was actually a legit good time. The kids played football with their dad, we tried different beers, the kids tried new foods. Everyone laughed and we just felt lucky that we could have a last minute family gathering on a weekday like this.
At one point, I was joking with my son that it’s more fun to watch daddy watch a football than it is to watch the football game itself. He looked at me puzzled before I reminded him that I lived with his dad for many years. “Dude, I know your dad well, we were married!” It’s adorable that they forget that.
I’m advocating hard for virtual everything right now and was proud of myself for finding a curbside COVID shot and haircut person to come to me!
I cannot stress this enough, if I am laying down in my bed, my HR is fine. Here are all the things that cause me to “exercise" above my safe range:
showering
filling up water bottle
grabbing food from fridge or pantry (not cooking)
getting up to pee
get literally anything that isn’t in front of me
brushing teeth and skincare
getting mail
taking ADHD meds (HR goes up)
anything related to laundry
picking kids up from school
And that 106 level? That was from two years ago when we tested my body in real time. I’m demonstrably worse now. If I retook that test, I can only imagine how bad it would be.
Did anything weird happen this week?
I did have an incident that freaked me out the other night. I spilled coffee on my sheets so I changed the fitted sheet. Then I realized I lost something that I was sure was on the bed so I went looking for it. I spent about 3-4 minutes out of bed searching before I checked the basement. It was there. I came upstairs and peed. My HR was 145. I could feel my heart surging in my chest and my chest felt like it did when I was doing sprints in high school—not painful but pumping hard. It took 6-7 minutes for my heart rate to drop below 106 after I laid down. That was 13 minutes of exercise, friends! What the fuck?
But do I feel better?
Yes! I don’t feel like I want to collapse 24/7. Less dread about making dinner or having to go somewhere in person. This last week has been an exercise in “well I suppose I don’t have to do anything.” If I have to do less, I will. I know it in my bones that I cannot sustain the pace I was even two weeks ago. So in that sense, I feel a lot better. My body likes this better.
It’s so hard to do less than the bare minimum though—that last 5% is harder than the other 95% of doing less if that makes sense. If you are able help us with meals, you can sign up for the meal train here.
There is a lot of relief in having other people understand too. One friend who knew me “pre-sick” said, “that article you wrote is absolutely superb. I feel like i've always been sympa/empathetic, but the way that you articulated it, I think I finally "get it"!” A friend of a decade said, “Hi friend. I just wanted to say that I read the sub stack. I will admit, but I didn’t have a good understanding that I now do.”
This was more emotionally intense than coming out. When you come out, all the gay people get it. When I do this, most people try their best to understand but have minimal lived experience to draw from. It’s lonely.
Any good news to report?
Yes. When I was evaluated with POTS, the cardiologist said the test was negative. He said I had dysautonomia but not POTS. FWIW, he used the mac-daddy tilt table test with timed blood draws. I suspect I have worsening POTS symptoms and have been experimenting with very gradual position changes to see if I can tolerate more time out of bed that way. Right now, it’s a very deliberate and involved process—comically so. If I stand up in five separate distinct steps and let my HR come down each time, I can *slowly* walk around and stay within my max HR. But I have to do everything in slow motion and I don’t have very long before I get tired. I made some banging shrimp tacos late Sunday night this way, perched on a stool in the kitchen.
I made an appointment for a cardiology followup with the PA to discuss what more I can do to manage the POTS. I’m hoping they will have some insight. I’m coordinating with my primary care doctor, my specialist, and my therapist to make sure we aren’t missing anything either.
I also had a lot of help this week with things around the house, freezer meals, friend check ins, and (very crucially) costume help! Thanks for everyone’s support.