Categories
Travel

Day 524 and Low Recovery

I’m on my way to Austin Texas today. Most of yesterday got eaten up by various preparations to be on the road. I’m scared for this trip as Texas hasn’t made cannabis legal so a core part of my physical stability regimen from my physician can’t be brought with me if I want to stay on the right side of the law. I’m terrified of Paxton the incredibly corrupt attorney general.

I did a bit too much yesterday in preparation for travel and unsurprisingly my Whoop and Welltory are flashing red warning signs. I struggle to sleep before travel because of the anxiety and no amount of magnesium, melatonin, quiet reading and essential oils was going to get me down. Even Ambien was like yeah girl your heart rate is crazy.

A poor set of recovery metrics from Whoop

I’m hoping the flight is easy and I get a good night sleep once I’m in Texas. I’d like to be in the green for tomorrow as I’ve got a few little things to finish in preparation. But my basics biometrics are still so bad a 45 HRV is considered good as I think I’m still in a long post viral thing from May.

The Texas heat is going to quite extreme unfortunately. I’m skeptical all go outside for any longer than it takes to get a cab. I brought a bathing suit but I am not sure frying by the pool will do me any good.

A weather forecast for Austin Texas showing a string of over 100 degree highs for a week.

I’m much more concerned about Texas’ notoriously unstable power grids. What if it goes down while I’m there? Will my Texas prepper friends take me in? Will the hotel be on a generator? Is downtown Austin likely to be restored quickly? What if it’s a cascade event and nothing can be brought up for days like their last major grid event?

I’ve done my best to set the lowest possible expectations for being able to meet up with me socially. Which is a shame as conferences are for networking. My DMs are packed with excited DAO folks trying to get my attention. Meanwhile I’m not even confident I’ll leave the hotel room for anything but my own talk and one meet up with a long time friend whom I’ve not had the chance to be with IRL.

I’d like to do more but so many factors are combining to make me extra cautious about obligations. There are too many potentials for a cascade failure and I want to give a great talk so I’ve got to save my energy for that. I’m not worried about being good for the talk.

I’ve got an incredible gift where I can muster all my focus and energy even when extremely sick. I’ll use every last drop of it to meet my obligations. No one will be able to tell I’m sick. And then it’s entirely possible I’ll crater for days. My autonomic nervous system is very sensitive. It’s a blessing and a curse.

I’d you absolutely must find a way to meet with me (and sorry pitching me IRL might not be in the cards but DM and we will chat) I may try to host some folks at my hotel suite. If you are an actual friend of mine and can respect the disability situation maybe we can make it work. But no promises. Which of course my actual friends will understand so open invitation and such.

Categories
Biohacking Medical

Day 522 and Tracker Jacker

I started an experiment with one of my tracking apps called Gyroscope at the beginning of the year. I took pictures of every single meal. For $150 they analyzed all of my meals assigned me a virtual coach to help me improve my total health scores across all categories including food, exercise, sleep and mood. A few days ago my husband physically took my phone away from me and canceled it. The experiment was a failure and it was it Gyroscope’s fault.

Personalized healthcare is a bit of a noble lie. They do give you advice that is somewhat personalized to you as long as your body is within the baseline of what we recognize as healthy. If you are within one standard deviation of the mean then it works great. These tools improve your health. Just remember most of our baseline data is from healthy, young, white, men. This isn’t a woke thing. That’s just the population with the most data.

It’s hard to give someone like me health advice. The basics are designed for otherwise healthy people that need to improve their activity, weight, sleep, and basic nutrition so they don’t become sick in the future. Maybe their biggest issue is being a bit overweight and sedentary. Most people do in fact need to move more and eat less and go to sleep on time. Chronically ill people, or those coping with an acute viral infection, still need to eat good nutrition but beyond the basics it gets more complex what we should recommend.

The coaches at any health app I’ve ever used have kept trying to give perfectly sensible guidance about activity and nutrition quality and lowering stress levels. I am sadly an extremely weird edge case so shit like walk more can actually be bad for me sometimes. Sometimes doing absolutely nothing is actually what someone with my medical history needs. And tracker apps have a tendency to go berserk when I need two or three weeks of bed rest. They go full red alert trying to make me get some exercise when my doctors are tell me any exertion is bad.

The straw that broke the camels back on the $150 a month experiment was getting influenza in May. It completely imploded all of my metrics. As a serious viral infection tends to do. I couldn’t get in any steps as I was basically bedridden. My food intake got weird as I was in Montana with friends and house hunting when I got sick. I had one perfect week of high protein and vegetables and then as I got sicker and sicker it was anything I could be coaxed into eating. There were two meals of milkshakes from Five Guys and that was considered a lucky break. Coughing and exhaustion sometimes means sipping a high calorie frozen dairy product through a straw is as good as it’s going to get.

As my metrics got worse from the flu and tracking food become a pointless exercise, I gave up on even trying to walk my very nice coach through it. There was nothing to be done on assigning me any health activities for weeks. I couldn’t exercise. Meditation did nothing to improve core metrics because I was fighting a massive infection. My sleep was shit because again fighting an infection. My nutrition was hit or miss as my throat hurt and my stomach struggled with new medications.

The renewal snuck up on me. I had wanted to say good bye to the coach. To let her know she tried. To reassure the Gyroscope teammates that my failures didn’t say much about them and how they coached people into healthier behaviors.

I’m a woman with overlapping chronic conditions that got an acute infection and there was no real way to come back from it in a short period of time. But I was still so exhausted and couldn’t bring asking Gyroscope for a pause (a sick break for fitness apps would be a killer functionality though). But my husband remembered the auto-renew date. So he just canceled the entire thing. Boom gone. Fuck off.

I opened the app for the first time in weeks today to at least turn back on the basic tracking so I didn’t lose any data history.

I like how the app does data visualization. I have no clue if I can track nutrition on the base level of product on Gyroscope. Whoever does their pricing tiers has changed it so much I’ve lost track. In the past I found it impossible to input nutrition into their tracker. It was amazing to have the app do it automatically. I relied on their team doing the macros not because I can’t do it myself but because I couldn’t figure out how to physically input it into the app. So I’m a little sad about that. But not sad enough to pay $150.

Categories
Chronic Disease

Day 517 and All At Once

I had insomnia last night. Earlier in the day I’d done a treatment for my spine and I felt terrific afterwards. I let the feeling of being without pain amp me up and then couldn’t come back down from it in time for bed.

I should have taken an Ambien and quietly read a book but, because I’m always worried about over using any type of pharmaceutical, I decided to wait and see if I could fall asleep on my own. Not that I helped myself in the matter. I kept my phone open and scrolled through such worthy topics as “what is Cat Marnel up to” and a meme account called tee-shirts that go hard.

I often find myself struggling with the decisions of “past me” when it comes to sleeping. I was in so much pain today I found myself unable to concentrate. The correlation between a bad night of sleep and a flare in symptoms is pretty clear. Living in a linear manner is one of the downsides of the human condition.

Around 4pm or so I had to tap out of the day. Forgoing the Ambien last night in a fit of false virtue meant I needed to a far worse drug today. I wanted to fight it but I just couldn’t. I slapped on a THC patch and put on Everything Everywhere All At Once. As I let the chemicals sort themselves out, I was reminded that time isn’t real as Michelle Yeoh made her way across the multiverses. The pain passed. Time did what it does in my human perception. And I’d survived it.

Categories
Emotional Work

Day 512 and Not So Glamorous

Remember that respite I had yesterday from the flu? Yeah me neither! I barely crawled out of bed this morning after some pretty gnarly dreams. My subconscious was going through it.

I had a three hour session of biofeedback yesterday working through some of my self limiting beliefs. It’s truly wild how you will just perpetrate the worst emotional violence on the people we love the most. Alex and I in particular love acting out various O’Henry stories in our marriage. Gift of the Magi is a particularly favorite where we will actively sacrifice something we love for the other only to discover we’ve destroyed the very thing that our partner loved. It’s a super fun cycle and every time I think we’ve found a way out of the cycle we manage to do it all over again. The problem is the glue.

So I was a bit frazzled today from working through all the emotional stuff. I need to stop giving Alex power by letting him take care of me. He needs to drop care taking me. You know standard marriage stuff. I can write whole love letters about it. Anyway I digress.

I was a bit fried today as I was recovering from pushing yesterday. I happened to have a friend that wanted to talk about how I was doing. I think he was expecting a more glamorous even sexy answer. People often think I’ve got a more interesting life than I do. Which is funny as I feel like I write about the mundane details of chronic disease with some frequency. But today I was not swanning about in Europe or writing love letters. I was in a dark cold room fighting off a migraine and some spinal pain. Because sometimes life just isn’t all that glamorous. And honestly that’s ok.

Categories
Chronic Disease

Day 511 and Respite

I didn’t feel like shit today. One of my doctors made a suggestion for how to spend up the post-viral malaise of this flu. I woke up feeling at least a little bit more human this morning.

I knocked out the first draft of my talk for Consensus. A task that has felt so overwhelming I’ve now blogged about it three times in one week. I am never prone to procrastination when it comes to writing so I know I must have been super sick if I felt I couldn’t write. That’s literally the one activity I’ve completely taken the fear out of through daily repetition.

I was able to do all the various “living” activities today too. Basic tasks like showering weren’t overwhelming. I was able to make progress on odds and ends for moving life forward. Making decisions about stuff like what to eat wasn’t hard. Basically I felt normal.

I am not sure if this is a respite from the flu and it’s aftermath or if it has fully broken. But I’m going to enjoy it with an early evening watching television and fucking off. All my downtime doesn’t have to be sick leave.

Categories
Chronic Disease Startups

Day 508 and Deficit

I woke up feeling reasonably ok today. I slept well but checking my trackers I learned my recovery scores were pretty low. My HRV was dipping into 30% recovery territory and I had a low blood oxygen count. I’ve been recovering from Influenza A so it’s not a surprise my lungs are struggling. But I tried not to let some bad data psyche me out. Maybe I was ok. I told myself I just needed to stick to my routine as I can’t let myself get into a physical deficit.

So I went about my morning routine with some optimism. I got some coffee and made breakfast. I took several rounds of supplements. I did some basic grooming. I felt basically human. I was all excited to dive into work from the second I woke up. I was so excited I’ve been dreaming about the presentation I’m giving at Consensus. I literally woke up with talking points.

And then at around 10am I realized I’d used up all my functional hours taking care of myself. Fucking figures. I am already in a physical deficit from this flu. It’s scary for me to be in a deficit as my favorite coping mechanism is to engage in workaholism. I over prepare and over work and I make demands of myself that only sabotage the end result. It’s entirely counter productive. It just looks socially acceptable because of the Protestant Work ethic.

So I need to calm the fuck down and accept where I am and that it will still be good enough. I know my shit. It’s worth it. And I’ll deliver on better than the average midwit. Honestly even acting like this is kind of midwit. The real galaxy brains would just be vibing it anyway. But it really is amazing how easy it is to fall into midwit fear based patterns. Believing in the bigger broader math of your own life is really hard because so much of our own ego is rooting for us to indulge in our worst impulses. So I’m going to calm down, not worry about my energy deficit and continue to do the work. It’s not glamorous work. It’s mostly making good decisions day in and day out. But then compounding kicks in.

Categories
Chronic Disease

Day 507 and Better is Not Binary

A close friend of my husband and I sent me a sweet check in text message today saying he hoped I was feeling better. Our friend is a sincere and empathetic person. Because I know know he does care for me sincerely I said how I was actually feeling to him. I was feeling confused.

lol I never know how to respond to this sort of thing as occasionally I get regular person sick but I’ll never not be disabled 😂😭

“Better” is a bit of a loaded term for me. It suggests so much. Absolute improvement like my flu is over suggests better. Or perhaps improvement that will stay put forever is better. Or maybe it’s a good day in a string of bad ones and that’s better. Better can be though of in both binary and scale terms.

Default healthy people think of better as binary because once they’re good enough they are “better”. The flu passes. They get back to normal. But if you’re chronically ill or disabled then better is on a scale and you never get fully “better” but rather ebbs and flows. I don’t always know how to articulate this to abled well people.

If you have someone in your life who you think of as not being very social, I’d like to ask you to discover if it is because of a physical disability or ongoing chronic disease. Maybe they aren’t social as they can’t accommodate your pace but they would love to spend time together with you if you accommodated their pace. A lot of folks are chronically ill. And we like to be friends with you. We just need you to recognize we require some accommodations from you.

Categories
Emotional Work

Day 504 and Write Down

I woke up coughing so hard I couldn’t catch a breath. I’ve forgotten how exhausting being sick feels. I legitimately completely forgot how it felt to be tired and in pain. And what a fucking luxury that is to realize.

I was in a miserable mood this morning. Why was I losing an entire week when I’ve been functional and dare I say normal since the new year? I haven’t had any issues since I got Covid over Christmas break with the exception of a couple nasty migraines and a few modestly shitty days. But today was Thursday and I haven’t felt even modestly human since Monday. It looks like I just have to accept in having a bad streak.

My husband very sensibly pointed out that I didn’t need to act like this was a catastrophe. I’m always looking over my shoulder in fear that I’ll have a relapse and be reminded of he limits of chronic disease. And truth be told I will have them. But I’ve been making the choices that shorten those bad days. I’ll be living a life in the country in support of keeping a strong body. It’s almost comical to type that as it feels a bit like tuberculosis and moving to the west. But then again I’ve always been a mountain woman at heart. It was only a matter of time till I returned to the terrain of my family. Maybe I’m a bit of a traditionalist after all.

Nevertheless this week is a write down. It won’t matter in the grand scheme of things. I’ve made the good long term choices. I’ve accepted that the fight is long and the odds aren’t great but this is America so you’ve got to fight like you might be one of the lucky few that win. I can only hope I am treading a path that gives me the chance to make a better life. And that I’m being reasonable clever and reasonably hard working and that’s often enough.

It’s actually quite hard to trust the math. You want to give in to all sorts of silly biases. Like that every second counts. When no it’s mostly just how your habits add up over time. The mind really strains against basic math like compounding. But I’ll try not to get my fear get in the way and trust that the figures probably add up and I’ve generally done the homework to trust my inputs.

Categories
Medical

Day 503 and Halftime

I really thought I’d kicked the flu this Monday. I drove back from Montana and I was feeling amazing about my life and my decisions. And then yesterday I just straight up crashed back into symptoms again.

I managed to both write and correctly tag and post while I was riding a modest fever high. Which is pretty fantastic. That’s how you know your habits are good. I was able to maintain my writing schedule on the strength of the rhythm alone. My husband who got tagged in yesterday’s post on Twitter was impressed that I was actually coherent. Practice really does make perfect.

I’m a bit annoyed that the flu had a halftime show. Now I’m fighting out the second half of the game and I probably didn’t take advantage of the respite of having a decent day or two. Now I’m back in the storm, to use an entirely different metaphor, and I’m upset the eye has passed.

Categories
Medical

Day 502 and Fever

I had a late lunch today. Maybe at 3pm or so. I took cough syrup with it. It’s now 7:13 and I’ve been asleep with a fever tossing and turning the entire time. I vaguely recall my husband coming into the bedroom to tell me he was going to tennis. I couldn’t wake up enough to tell him I was sick and needed help getting situated for the evening.

My best case scenario is I’ll crawl out of bed to the bathroom drug cabinet for NyQuil. I don’t think I can make it downstairs for more water though. I’ll have to drink from the tap. I’m finding myself wondering how much longer Alex will be out. One hour? Two hours? How long is tennis? The shades calendar isn’t on my phone. I’d need my laptop to check and I have no idea where it is as I’ve not unpacked from Montana. My Whoop needs a charge. That’s at the edge of my fever brain. Maybe I can wait till he’s home to address that as well. What’s one night without data right?

I keep trying to access parts of my mind about what I need for a stable night I can sleep through. Do I have it? Can I wait? Will I be able to wake up enough when Alex is home to get the help I need? Can I push through with what I have now. I actually had no idea I could still spike a fever this far into the infection. And I bet when I read this post without the fever high it will make even less sense than it does now.