Category: Chronic Disease

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Chronic Disease

Day 156 and Social Accommodations

One-on-one synchronous communication requires energy and commitment. If you have plenty of energy and few health problems maybe this isn’t intuitively obvious to you why it’s tiring for me. To understand I highly recommend the Spoonie theory of living with chronic disease. A Lupus patient Christine Miserando explains to a friend using “spoons” as a prop/metaphor.

So, she laid out a handful of spoons on the table and explained that the spoons symbolize all of a patient’s daily energy reserves. Every activity, no matter how thoughtless and automatic, depletes from the energy supply. Getting out of bed, showering, getting dressed, eating, and any number of mundane tasks threaten to deplete energy at any given time. When you run out of spoons, you can choose to borrow against the spoons of a future date, but there are consequences. When you deplete your spoons, you are bedridden. Unable to manage the simple activities of life.

I work with a limited set of “spoons” each day. If I manage my energy budget well you would never guess I’m any different than you. But I optimize my day around accommodating my firm energy budget realities. I think of it as a wheelchair or a crutch. It’s a tool that helps me extend my capacity. I can do more with less energy and thus I need fewer spoons.

One area that makes a huge difference is digital asynchronous communication. Written documents or presentations, text messages, email, Slacks, heck even voice memos are all great ways to reach me as long as you don’t expect an immediate response. Asynchronous communication means respond when I have the energy. I rarely feel overwhelmed by those as there isn’t a need to respond right that moment. I don’t have to use a spoon to get you a response. If you need FaceTime or a phone conversation then I have to work around your preferences (which might not be strictly necessary for the information it’s just what you happen to link) and then you are also asking me to prioritize your preferences over my limited energy banks. Which can feel disrespectful if you don’t suffer from strict energy budgets. You are asking me to take a double hit. Accommodating me makes me more likely to budget more energy and time on you in the future if you respect my energy now.

This means you may need to reach out more. If you expect a synchronous back and forth you may end up waiting on me. Please don’t wait on me to reach out and have energy & free time at the same time as you. You will wait a long time! Reach out and we will work it out asynchronous style.

This is why I love social media. It is easy way to connect people to what I am doing on my own tike frame I have extremely limited energy and capacity to express that one on one. If I had to I’d end up limiting my entire world to like 3 people. My energy for one to one communication is limited. As someone who is disabled and chronically ill, I feel lucky that I have access to technology that allows me to expand my capacity to connect and communicate. If I didn’t have these tools my world would be severely limited as each conversation and interaction I have takes significant resources.


Like a myriad of writers who have been sick before me (Walker Percy, Virginia Wolf to name a few) I use this tool to extend my life and influence beyond the bed in which I spend 12 hours a day. So please understand I cannot always communicate in real time or in person for everyone. It’s the highest energy usage thing I do. Let me use technology to expand my world beyond my bed. We will both get a lot more out of it and you will find that thanks to technology I can can as much done as you.

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Chronic Disease Emotional Work

Day 147 and Over My Skis

For a Colorado native (let’s ignore that I was born in Silicon Valley) a number of our most cherished pastimes are kinda “meh” for me. Skiing is a sport that I can take or leave. That apres ski life is much more appealing than cutting it up on the slopes. But one key metaphor from ski culture gets used lot. “I’m over my skis.”

To be over one’s skis is to risk crashing. Being over ones skis happens out of enthusiasm. An inexperienced or unfocused skier lets their center of gravity tilt forward over their knees. Best case scenario, you are simply going too fast and you better “pizza” your skis to slow down. It’s a endearing but slightly awkward experience which is what makes the metaphor so appealing. It’s never a bad faith metaphor merely a goofy oops.

I got over my skis this week. I’ve been so excited for my workload (new investments, new startups to advise) and some new structures forming in my life (chaotic.capital is coming into focus) that I’m leaning in and finding myself going too fast. A friend of mine, who is my favorite person to “over do it” with, was on the phone with me a lot. I was excited to talk to her. But all this added up.

I realized oh shit I need to slow down. I haven’t crashed yet but I’m french frying. There is still time for me to “pizza” or in the immortal words of South Park’s ski instructor Thumper

If you french fry when you should pizza, you’re gonna have a bad time

I love french frying, the food, the ski position and the metaphor for speed. I want get over my skis. But if I don’t pizza “I’m going to have a bad time.” So with true Colorado wisdom it is time to kick back, get some THC and pizza. May this edition of Rocky Mountain wisdom aid you in finding balance on the slopes and off.

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Chronic Disease Politics

Day 142 and Optimism

The pandemic has done more to improve my life than to it has hurt it. I have a little survivors guilt as I am not far from family and friends that have suffered but I was lucky. Part of my luck has been tied to my privileged place in society. I was able to enjoy housing flexibility and leave behind an expensive city apartment for a townhouse in my hometown. I was always able to work from home with little fear my income would be impacted by disease or even negative secondary effects. Nevertheless I haven’t felt much optimism until recently.

Part of my lack of optimism has been tied to my health challenges. It’s been two years of working to get a diagnosis, stabilize my spine, and get the secondary symptoms controlled. There were low points when drug regimens didn’t work. Or when it seemed like the fatigue or pain would keep my life away even when primary concerns were improving. I was genuinely terrified going into the pandemic as it did cut off my access to typical doctors visits and more hospital setting delivered care.

But I’ve found significant improvement over the past six months thanks to excellent remote care I was able to receive from functional medicine doctors. It’s almost as if with the operational and physical logistics of care removed the actual outcome of my care improved. I was able to get to the heart of a diagnosis and hone in on effective treatment protocols more quickly. Thanks to this improvement I’ve come to find my optimism again.

Not that I think the world is getting better. If anything I’m far more worried about the many axis of American failure. Our politics has become authoritarian. Our economy increasingly serves only the entrenched and already wealthy. Our interest in mitigating climate change remains low. It’s so bad the best we can do is chuckle at why millennials don’t have kids. It’s because they are selfish right? Nothing to do with how hard it is to trust that the system will ever work for you so why bother investing in the future?

But I am intrigued by the opportunities afforded by the chaos. There is money to be made adjusting us to new realities. Maybe by dint of accidental or unexpected changes we find innovations that change our world. Maybe those will be for the better. And maybe I can help nudge along the better outcomes. And for the first time in a while o believe my body will be up for the challenge. It’s nice to be optimistic.

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Biohacking Chronic Disease

Day 138 and Positive Reinforcement

All my health apps think I’m dying. Which like no duh guys I’m an avid biohacker because I’ve got some health challenges. This is a persistent issue across most tracker apps but a compelling example is the Gyroscope app which relies on a health score system. Because I have a high resting heart rate due to chronic pain from ankylosing spondylitis I get served persistent alerts like the one below. “Warning you are more likely to get sick right now”

Of course, the issue is if you are always getting flashing red lights your inclination to do anything goes down. It’s the “boy who cried Wolf” problem. If I’m always being told I’m more likely to be sick now why would I ever modify my behavior to try and improve things? It’s always “now” so there is no point in doing anything to make a better future.

We see this problem across so many areas where our future selves would benefit from our present selves being more responsible, from personal finance to weight loss. If everything sucks now and nothing we do seems like it will improve the situation by a meaningful margin why bother?

App designers need to take note of this tendency of despair based on the gap between short behavior loops and long term goals. Nudging us towards improvements required positive reinforcement that rewards us for who we are now even as it seeks to compound the positive effects for significant change over time for a future outcome. If you’ve got 50lbs to lose you need to be rewarded for each small decision that helps you lose your unwanted weight, not be told everyday by an app that you are at risk of disease.

Overwhelming human minds with the enormity of a goal or a gap between our current stare and our long term goals doesn’t lead to positive short term behavior. If it did we would have solved climate change and racism by now. If we think a problem is within our power to solve we will try but fuck it why bother if it’s a parade of impossible scenarios.

If you are designing systems for people that need to make changes keep in mind this gap. You will see better results and happier humans if you lay off the doom and gloom. Positive reinforcement works.

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Chronic Disease Chronicle

Day 129 and Worried About Wellness

Last week I felt like I was struggling to hold together level emotions and coherent thought. I had a lot of “feels” posts where I spent more time inspecting my interior world than I did analyzing exterior events.

When I feel energetic I can take in more information and engage in synthesis but when I’m feeling tired or otherwise am flaring from autoimmune condition I requires more mindfulness. This mindfulness lends itself to more of an inner focus. Often this brings me a sense of peace and emotional well being. Lately my case has been well controlled to the point of recovery, yet I haven’t felt as emotionally joyful about the development as I thought I would.

Then around Thursday or Friday of this week I found myself turning a bend. I was excited to think about very abstract ideas like the aesthetics of finance and how critical theory and how great works culture is colliding with Gen Z vibes.

I struggle with wanting to lean into enthusiasm though. Too many days in a row of exertion or excitement and I fear I’ll set myself back. That’s a kind of self limiting behavior that I hope I can let go. I want to feel confident in my energy but I do not want to turn myself back into workaholic habits either. This is a fear so persistent I’ve tagged eight posts in the last five months with the topic. So great is the fear that I felt some relief that I felt physically unwell today as I could blame my body instead of making the choice for myself if I wanted to be driven by energy and not recovery.

I can’t put off the mixed emotions on wellness and how I feel about working in the world. My capacity is nearly there. I’m taking on more and more. I have even plotted some of my next moves. But I’m feeling Augustine about the whole affair. Oh make well God but not quite yet!

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Aesthetics Chronic Disease Chronicle

Day 122 and Soul Delay

There is a line in William Gibson’s Pattern Recognition that has stuck with me for years. The context isn’t all that crucial except to know the hero has just taken a long flight.

She knows, now, absolutely, hearing the white noise that is London, that Damien’s theory of jet lag is correct: that her mortal soul is leagues behind her, being reeled in on some ghostly umbilical down the vanished wake of the plane that brought her here, hundreds of thousands of feet above the Atlantic. Souls can’t move that quickly, and are left behind, and must be awaited, upon arrival, like lost luggage.

Sadly I am not jet lagged, as that would imply international travel which is a context I doubt I’ll have for at least a few more months. But I’m finding soul delay can happen even without jet lag. The separation between one’s body and one’s soul is a rich emotional issue. For the past week or two I feel like I’ve been reeling from a gap between my soul and my body. It came on suddenly, despite all the disparate causes been easy to see coming and not remotely surprising.

The dawning realization that I may not be stuck forever with a chronic illness hasn’t been the unmitigated joy I anticipated. In fact, it’s been fairly miserable realizing that the convenient excuse to keep me from workaholism won’t be an available crutch forever. I’m assessing all the things I take for granted in my life and their myriad benefits and it’s not pretty. It turns out even the most joyful possible goal attainments come with a host of introspection.

And that generally means you can’t lie to yourself. It actually feels a little bit like attaining wealth overnight. All those excuses you used to have about how you’d just pursue the life of your dreams if not for financial limitations? Some of them turn out to be lies you’ve been telling yourself for years. And then how do you feel? It turns out much of your circumstances were self imposed.

Which isn’t to say that I’m finding out I need to make drastic life changes and that I’ve been living a lie. That would actually be easy! It’s more that the sum of dozens of self limiting beliefs need to be assessed, turned over for utility, and discarded or repurposed. Why was I a founder? Why am I married? Why do I pursue attention? All of these are little bits of honesty that are giving me soul delay. Because finding out what I actually want, without the benefit of a circumstance preventing me from achieving my desires, is going to require reconciliation between my soul and my reality.

So right now I feel a kind of emotional jet lag. After intensive work and a significant amount of willpower I am getting what I wanted. I’m getting my health back. But I’m still reeling in my soul from the journey. The cortisol spiked adrenaline of the effort is wearing off. I need to recover from my recovery. My soul needs to reel itself in. But I don’t know when it’s arriving at baggage claim. And I’m so very tired from the effort. So even if I have arrived it doesn’t feel like I thought it would. I hope I can be patient with myself while I wait. It’s been two years so I figure what is another few months?

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Chronic Disease Internet Culture

Day 121 and Health Data

One of the biggest blockers to taking up a more quantified approach to personal health is your ability to get good data. Why? It’s not because it’s hard to capture or track key metrics. Nope, one of the biggest blockers is the consistent portability of your personal health data. This frustrates me as biohacking has been key to regaining my health but it’s a challenge to keep my data sets in order.

No one uses one piece of hardware or software forever. Preferences evolve. Doctors want new metrics. A new device comes on the market. You decide one metric isn’t worth tracking anyone. Or maybe your Fitbit just shits the bed and you decide to buy a new type of step tracker. Whatever the reason our stack changes over time. And yet data interoperability seems like a pipe dream. Devices and applications act is if you will be with them forever. Your data gets parsed in their specific presentations with little indication that it can be exported for later use in another table or application.

If you are considering doing work in health data please take into consideration that even if you build the next billion dollars company with a decade of your leadership, it’s possible your customers will won’t make it for the whole ride. Please don’t tie them into your best case scenario. There are real people on the other end of your metrics and they are making important real world decisions with the health data that is making you money. Respect that we want you to make money for providing us with value but there may be a legitimate reason we need to make a change. We should have the ability to take our data and have it be usable somewhere else. So please don’t optimize for “sticky” user behavior that keeps us coming back. Give us value without having to sacrifice our freedom. If you can’t do that then maybe you shouldn’t be in the health business.

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Biohacking Chronic Disease Chronicle

Day 120 and Naps

I’ve always been prone to energy dips in the afternoon. I wake up immediately ready for the day but after lunch and another of work or activity and I’m heading off an energy cliff. If I allow myself a burst of sleep I’ll be back and feeling as energetic as I was in the morning right as my body insists on an energy dip as it is dinner time. Two hours later and it’s basically bedtime just as my second energy burst is coming on. Not great timing if I’m honest.

I used to force myself through afternoon lulls with caffeine or attempting to slot in a workout to push for energy. Neither really worked well for my rhythm or energy. Once I went on medical sabbatical I was able to test out the afternoon nap. The Mayo Clinic agrees it has proven benefits for cortisol levels and stress. WebMD has a long roundup of benefits like lowered blood pressure. The only thing you have to look out for is if you are an insomniac then late afternoon naps might push your bedtime back.

This is a concern for me as I regularly get too worked up to fall asleep easily. I practice all the sleep hygiene best-of hits like blue light blocking, dark cool rooms aand magnesium and still I find myself longing to find my phone and doomscroll Twitter. My biohacking efforts on the most restful night of sleep are easily derailed by the need to dunk tweet or reply guy.

I long to find the ideal balance of nighttime rest and day time napping to make my ideal circadian rhythm shine. I wonder if I should be one of those types that breaks their sleep pattern into two blocks. Biophasic or segmented sleep always seemed like a cool hack for maximizing energy. I just don’t know if it would accidentally break me.

As much as I want to go on some sort of sleep optimizing spree my gut tells me I just need the sleep that I need. I probably need the eight hours at night along with an hour during the day. It’s just fine that I sleep more. It’s literally the best thing anyone can do for their health.

The tricky workaholic part of my brain fantasizes about having an even block of productive work that shifts my bedtime so I have a six hour evening block to match my six hour morning block. I get indignant that after my nap in the afternoon instead of rising into a second workday my energy is consumed with practicality like dinner and sleep hygiene routines. I should not push my body for my workaholic fantasies but the bio hacker in me really wants to try.

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Chronic Disease Chronicle Internet Culture

Day 118 and Games

I wasn’t a gamer as a kid but as an adult I’ve come to love gaming. The joy of accomplishments, the camaraderie of guild members, and the fantasy of the worlds are powerful magic. I’ve met dear friends that I love every much as anyone IRL.

Gaming has significant social benefits apparently. Which anyone who spends a lot of time in Discords and guild chats can vouch for. My gaming friends are some of my closest friends. I know more about their lives than I sometimes do about coworkers or casual acquaintances.

In findings published in 2017, the team found that MMO engagement correlated to a stronger sense of social identity, or how people self-identify based on their affiliation to groups. That social identity then corresponded with higher self-esteem and more social competence and lower levels of loneliness, the researchers found.

But it doesn’t have to be immersive or social to be worth my time. I like ditzy mobile games too. Silly games that don’t take up too much cognitive overhead can be the most relaxing. It’s fun to move around cartoon bubbles or dress up a Kardashian. And sure enough that has benefits too. Improved problem solving skills, improved cognition and and eases pain. Guess that might be why I like it.

“It’s common to try to distract ourselves from pain by paying attention to something else or focusing on other body mechanisms, but that’s not the only reason why games are a good post-injury prescription. Playing can actually produce an analgesic (pain-killing) response in our higher cortical systems. The more immersive, the better—which is why pending virtual reality systems may one day be as prevalent in hospitals as hand sanitizer.” Mental Floss

The truth is even with all the benefits I think play is important. Time to do nothing but engage in childlike enjoyment makes life better. I just want to do something fun and relaxing and and not worry about anything while I do it.

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Chronic Disease Chronicle

Day 117 and Drained

I feel like my mind hasn’t caught up to my body this week. Usually it’s my body that isn’t caught up to my mind. But I’ve been fighting so hard to get physically healthy that I don’t think I fully considered what it would mean to achieve it.

I’m exhausted as the reality of a change is hitting me all at once. I’ve been having a roller coaster of emotions trying to figure out how I feel. Some of it is a resistance to change. But I think some of it is simply that even positive changes require emotional adjustments. Adjusting to a new self requires a lot of energy.

A part of me feels like I’m fighting some boss that if I can just defeat will let me get to the next level in the game of my life. And I’ve used up all lives trying to get through it. I’m pretty sure I’ve figured out how to make it happen but I’ve been at it for so long I can barely see straight. But who wants to take a break when you are so close to leveling up?

I really don’t have it in me to say much more today. But I’m pretty sure I’ll have more once I can just get through it.