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 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

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 Startups

Day 505 and Deadlines

I’m trying to stave off a cortisol spike that my body simply does not need. I’ve got a talk coming up for Consensus in June and I owe an editorial with my main thesis along with any visuals I may need for the talk due next week.

I know the area I plan to speak about quite well. It is titled the InDAOstrial Revolution and I plan to cover some far future possibilities for what the new organizational structure can bring. And I do mean far as I’ll talk about some radical ideas like data collectives for rare diseases and networked nation states. I’m really excited as I think decentralized autonomous organizations offer us a new path for how we can pool different kinds of resources. I think DAOs give humans a chance to build better bigger weirder things on totally radical timelines just like the advent of the corporation did before in the industrial revolution.

I’ve been watching Gilded Age as I’m a sucker for set pieces but also because I love stories of wealth and power and cultural mores being pushed. I think DAOs have the chance to do that for society and the family in a way that is just as unsettling and ultimately wealth creating as anything we saw in the Gilded Age. And the changes we see to cultural norms will be every bit as revolutionary as the ones we see with inventions or investments. When times change, we push all of the ideas we have about how to properly organize individuals and citizens with it.

What I’m saying is I’m obviously passionate about the topic and even when I’m home with the flu I’m thinking about ways to knit together different worlds and metaphors. I might not be the best expert on DAOs nor am I remotely close to being one of the earlier people to get into them, but I’m absolutely an informed and enthusiastic professional with the training to think about this holistically. So I’d listen to me if I had the chance.

Nevertheless I’m worried I’ll botch the talk. My mind wants to worry I’ve run out of time to do a good job (I obviously haven’t) and that even if I put in a lot of hours it could have been more. I could have started sooner.

But honestly I’ve got to let that self defeating talk go. What I bring will be enough. And a deadline looming even with a sickness is no reason to worry when you know and love a topic well. So I’ll trust myself to bring you something good.

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.

Categories
Emotional Work Medical

Day 496 and Pardon the Interruption

I’ve been on quite a streak of processing as I’ve written through the emotional rollercoaster of a potential move to Montana. We found a house that seemed absolutely perfect but had to work through our feelings on the matter. We put an offer on the house and as of tonight we are the leading offer and negotiating the legal deal points.

I am however really sick. Alex tested positive for Influenza A last week and while I briefly felt under the weather, I thought my hyperactive immune system had beaten it. Alas the data suggests I very much have the flu and I’ve done my famous “double dip.” This happens to me fairly regularly where it looks like I’ve beaten something abnormally quickly but if I am stressed or not well rested the latent infection doesn’t quite clear and a week later it roars back full force.

Welltory reading showing high stress, los energy and my health at risk
Whoop reading showing a dangerously low blood oxygen count and an elevated respiratory rate this morning

Given my current status I am going to take a bunch of NyQuil and stay in bed and send my apologies to anyone who might need me tonight as I’m clearly a bit addled in the head.

Categories
Chronic Disease Startups

476 and Temptation

When I am feeling healthy I love to over do it. Most days I feel basically fine. Which is a significant improvement over even two years ago. I was living a little low. But maybe once or twice a week now I will just feel terrific.

Today is one of those days. I woke up early after a restorative night of sleep. I didn’t miss anything on my extensive wellness regimen. I was just nailing the day.

The sad part about doing wellness because you have to for a chronic disease is that you aren’t even ever hotter for it. Healthy women be doing yoga & taking supplements and practicing wellness and it’s a fucking Instagram campaign. I do all that shit and at the end I’m “ok.” It’s actually pretty demoralizing. I engage in flawless yuppie next generation wellness because it’s actually keeping me alive.

With this context it’s clear that I resent having to take good care of myself. It feels like a burden. So when I have a really good day. When I’m just energetic and focused and, yes moisturized and thriving, I’m also plotting how to undermine myself.

Because I felt terrific I just hand to indulge in it I took a bunch of calls and did a bunch of portfolio work. I went for an hour long creekside walk to discuss some communication strategy with Alex. I was vibing. Until I wasn’t. I crossed some little threshold and realized I needed to pull back the energy expenditure. I recognized I have given into temptation this time.

Categories
Chronic Disease

Day 472 and Missing Out

I never had headaches in my twenties. Migraines were a cultural phenomenon I was aware of it never experienced. After I did fertility treatments about four years ago my body went though a number of changes for the worse. I developed an inflammatory condition. And I became acquainted with migraines.

My migraines are the light and sound sensitive type. They leave me nauseous enough I have a prescription just for that. I’ve tried a number of treatments for the migraines prophylactically, but only Imitrax really helps once it starts. If I’m lucky I can turn one around in 3-4 hours with medication and a cold dark room.

Today wasn’t a day where I could turn it around fast enough. And I feel sad and alone and depressed about it. I was supposed to meet friends for a nice meal to celebrate with them and I’m missing it because I couldn’t control the migraine fast enough. Alex my husband made it to dinner with our friends but but alas at home in a dark room waiting for my Imitrax to kick in.

I debated if I could force myself into showing up but it was decided the amount of pharmaceuticals required wasn’t passing a cost benefit analysis. I tried to make a case for it saying if I just tossed enough pain medicine at the migraine maybe I could do it. But the rational vote from Alex was a veto. And he’s right if it takes an opioid to get me out the door that’s not something I can justify for a social event.

The irony is I actually dislike fancy dinners out. I find them to be exhausting. Having to sit on uncomfortable chairs and socialize for two hours is very expensive energetically for me. It probably takes a day to recover from the energy expenditure and I often have to up the doses of my stabilizing medications. I tend not to say yes to them as it’s expensive for me and I don’t enjoy them.

So I don’t know why I’m so upset that I’m missing this dinner. But I am so upset. Maybe it’s because I’ve had months of stability without any issue. When I said yes let’s go I expected to be fine. The last time I recall having a major crash was in early February. Since then I’ve flown internationally, lived on my own, and made it to a crypto conference in Miami with little incident. So maybe I was due for a bit of a crash. Maybe it’s just inevitable that if you push you need to rest.

But I feel miserable, inadequate and guilty about it. Like I should have tried harder. Should have taken more drugs. Or at very least been more upfront that sometimes my body is unpredictable and I find it challenging to have be “on” and in public for social things that aren’t strictly speaking crucial. But now do you tell beloved friends that they aren’t crucial? You can’t really. I just have to hope I can do it. And mostly I can. But not today. Today I couldn’t.

I feel like maybe I owed my friends a performance. I can perform in even dire circumstances. I never miss a dinner or event or appearance at which I’m required professionally. But I don’t hold myself to that stand personally. Sometimes things happen and I just can’t do it and I have to let my body dictate my schedule.

That reality makes me feel isolated and alone. Because I can’t make the same commitments as regular people to socialize and enjoy normal things. There is always the risk that I’ll have a bad day. And I save my energy for work because I have to. So that means I don’t get to have a normal social life like other people. I don’t usually mind but today I do. Today I’m missing out.