When you live with a chronic illness a certain element of unpredictability is always there. As I’m settle into having a case that is under control (what I wouldn’t give for a term like remission but autoimmune doesn’t get terms like that) I find my body is more reliable. More days are good days and bad days can be papered over with drugs. And as an autoimmune case stabilizes you can take more risks to push through bad days without promoting a systems cascade. That means you can take more risks on a good day and have a positive outcome.
Today was a good day. It might sound strange but this was the first noticeable day where I worked a straight workday in over 18 months. I started off before 9am and didn’t wrap until 5:30. I barely broke for lunch. It’s not that I haven’t worked during my sabbatical and recovery months, but typically I try to keep a pattern of rest between work blocks. I doubt anyone feels great at 4pm but in particular I notice all my symptoms are at their worst in the later afternoon. Frankly people are onto something with siestas.
I’m honestly thrilled to have had an extended good day. I didn’t notice any major pain spikes at any point in the day. I can usually tell if I overdo it and need to rest. Sometimes it’s just a pain spike that forces me to lay down. That wasn’t the case today and even more excitingly I don’t think I dipped into any reserves to have a full day. I suspect I’ll feel fine tomorrow.
It’s honestly not that different from using up too much HP or lives in a video game. Sometimes you gotta do it but it’s expensive. And sometimes you go up against a boss and are like oh “huh” guess I’m stronger than I thought. Today I discovered I’ve actually built back up my HP. And I’ve still got all that old XP from years of grinding. It felt like I had misjudged the difficulty of a level I hadn’t played in ages. I was so sure I was going to get beat. But I sailed right though. And I’ve still got plenty of lives for whatever level I’m playing through tomorrow.
When I first set out to write everyday I didn’t set a goal. I think in my mind I meant it as a month long exercise to create more. Now I’ve got no idea what will eventually break the streak. I’m sure when it happens (something is bound to occur) I’ll be frustrated and I will just keep going the next day I hope. I’m trying to remember that Banksy “when you get tired, learn to rest, not quit” graffiti with the little girl sitting staring at a bluebird. I know it’s the stuff of inspiration Instaporn but whatever works right?
I’ve managed to write through a fair amount of awful shit in the last hundred days so it’s not that I’m afraid I’ll quit. I’ve become accustomed to simply opening up the draft space and writing. I just start some days with no particular topic in mind. Its more the knowledge that I am going to need to take breaks. Maybe not from writing but from life.
Today is one of those break days. I can barely tell you what happened today. I’ve got a project with a deadline but as I pushed myself physically yesterday I found that I needed today off. Resting today gives me tomorrow. I know this sounds basic but as a workaholic I’ve not traditionally been good at resting when it’s not been forced on me.
Usually on rest days I’m prone in bed as I’m in too much pain and too exhausted to do anything else. I hid this for so much of my illness and now I’m almost comically transparent about it. You’d think I’d be considered a liability and no one would ever want to work with me (or be friends with me) and yet I’ve found that not to be the case.
The empathy I’ve found in almost everyone makes me wonder if we’ve got our reputation building advice all wrong. I was under the impression I needed to hide my illness and always excuse strength. But the more honest I am about my capacity and my limits the better my work and relationships get. I’m slowly leaving behind the persona of “always on” hustle “I’ll sleep when I’m dead” bullshit of my younger years.
I still have a lot of fear about being perceived as unreliable. There’s not much logic to it. I always meet my commitments head on and when I physically can’t people understand. I work with backups plans and teams so that its never a crisis if I simply need to rest. The work gets done with or without me because my reliability is a function of preparedness and collaboration now instead of will force and midnight marches. If anything I think this makes me a better partner to work with ss instead of relying on my “at any cost” personality you can rely on me simply slowly and with planning getting your further than we could have gone alone.
If you know me well then you know I’m not a natural people person. Despite being both an optimist about the human potential for progress and generally being a happy person, I think a lot of people suck. I know it’s a shitty outlook.
Maybe it’s because I just don’t have the energy for socializing. Big gatherings are not my thing, even though if you met me casually at a party you’d probably think I was an extrovert. If I’m putting my time aside for you it’s because I really enjoy it. The people I spend time with have to be great. They teach me something or have a unique point of view or have great emotional capacity. Most folks just don’t seem to enjoy putting themselves out there. Or maybe it’s that they simply don’t want to offend you so never really say anything of interest. I just don’t care what shit you bought or what your constantly over scheduled activities happen to be (though this has become less true in the pandemic).
I really don’t want to go back to socializing as a professional prerequisite. I hate having to tell people how I am. No one actually wants to know. I don’t really enjoy holding my tongue. Professional events generally require you to keep quiet about how much you think someone is bullshitting.
I’m often a huge hit on panels at conferences because I don’t give canned responses but wow does that make more polished people squirm. I once made the mistake of telling the truth at a Goldman Sachs retail conference. The analysts went wild. The poor CEO next to me looked like she wanted to die. It’s easy to tell when someone is using a script and talking points when the person next to them is just talking without a filter. Humans like truth and honesty it turns out.
I really hope we don’t go back to constant networking and prioritizing people who are naturally socializers. I hope the pandemic broke some of that tendency towards rewarding the constant parade of events, cocktails and ever more exclusive gatherings. But I’m sure there will be a massive correction where everyone loves real life experiences again. But once it reverts to the mean let’s all agree to be a little more judicious in our asks to “meet up” in the future. I’ll send you a Harry and David’s gift basket if we can continue to see less of each other.
I got some great news today. All my most recent round of blood work came back in the healthy range. After several years of piss poor inflammatory markers I’m thrilled to see it getting back to normal. But I’m somehow I’m a foul mood for the day.
I talked to a friend about some exciting work we want to do together. It’s exactly the kind of work I’m looking to do in the future and their take on the problem is especially creative. But somehow I’m in a foul mood.
It’s a beautiful Easter Day and I’ve done nothing but enjoyable activities. I went for a hike. Are a gorgeous meal made up of ingredients from our local dairy share and greens from the hydroponics we grew ourselves. But somehow I’m in a foul mood.
I can’t remotely pinpoint why I should feel angry or sad or in anyway negative and yet I’m just a half a step off from the reality of my life today. Not even a viral tweet is doing anything to cheer me. And I usually love dopamine hits. I only had one minor setback in the whole day. I wasn’t looking at a timer and I had a gaming account get zeroed (it will cost a little money to rebuild). Ironically the last time this happened was over Christmas. Apparently holy days and games are a poor mix. But that shouldn’t account for a mood.
I guess some days are just moods. But I’ve got some nachos and tomorrow is another day. I bet I’ll be happy tomorrow.
I’m feeling pretty good these days. I’ve written about my progress and my biohacking. But one area I’m not improving in is consistency. Despite meticulous record keeping and a routine I maintain assiduously, it’s almost impossible to predict when I’ll have a bad day. They appear at random!
Most days were bad days the past two or three years. The good days really stood out. I noticed them because they were rare. Now I’ve got a pretty consistent pattern of several days on and one day off. Sometimes I’ll even wrack up almost a week of good days. I used to have bad months and bad weeks. Now it’s rare for me to have more than three bad days in a row.
But I’m still regularly caught off guard by bad days. Out of the blue for no discernible reason I’m in pain, exhausted and struggling with basic function. The pain is the first symptom. Radiating out from my upper spine it pins me flat on my back in bed. About all I can manage in that state of pain is my phone over my face and the light gestures required to work a touch screen. But I don’t know why I have these bad days.
I can do everything “right” and be feeling terrific and then I’m fucked up all over again on a dime. Now I’ve got a small pharmacy I can toss at my symptoms now so I can often medicate myself back to a tolerable baseline.
The issue is what should I do once I’ve recovered? Do I rest? Build up my strength? I used to practice “active resting” where I would engage in restorative practices even when I felt well. The idea was I was building up a reserve of energy for the next crash. But was that the wrong approach?
I’m beginning to think I should take advantage of every last moment of health I have. If I feel well then screw the “active resting” I’m going to use every good minute I’ve got to pursue my goals. Active resting doesn’t seem to have any benefits I can reliably track. And it seems no more likely I’ll have a good day if I have rested then it is I will have a bad day. At best it’s marginally related to a poor night sleep but once I’ve woken up to face the day the day is cast there isn’t it?
I hate that I’m unreliable. I hate that I can’t track triggers. Doctors have seemed largely sanguine on the issue. Some days will just be bad. Sometimes your immune response will be off. But I’m feel lost and angry that I don’t know how I can live life without some degree of predictability. The only thing I can rely on is that on good days I feel good. So maybe I should just pack shit in on those days. No restorative crap. Just go hard at my goals. I’m not sure this is a good plan. It’s probably a bad one. It could just be my addiction to work talking now that my mind knows my body can handle my hard living again. At least for a few days. But if hard living doesn’t produce predictable crashes then what should my takeaway be? Fuck if I know.
I’m getting the sense that a lot more people suffer from general poor health than we let on. When I discuss my own struggles my inbox blows up with fellow suffers of autoimmune conditions. People are fatigued, in pain, mentally sluggish and often struggle with adjacent symptoms like chronic inflammation or gastrointestinal ailments.
Please know you are not alone. As it’s rarely considered socially acceptable to be sick (it’s own issue) I’m going to use my position of privilege to discuss how I’ve hacked my way from completely disabled to about 90% healthy. I’m here to share what luck, power, and wealth have given to me so others with less may succeed like I have.
Step 1: Diagnostic Baseline
It’s really hard to do anything when you are sick and trust me I hate being told well nothing is wrong so maybe just lose weight, exercise and eat healthy. Like sure you fuckers I haven’t considered yoga. Fuck all the way off. But alas it’s true that in order to navigate modern medicine you need a baseline. Go to a GP and ask for a full blood work up. A blood test is typically composed of three main tests: a complete blood count, a metabolic panel and a lipid panel. Read up on what you might see on a typical blood panel. This article is a good place to start (I am not a patient of theirs and do not endorse them for care it’s just a reference).
Step 2: Pick Your Tools and Measurements
If it is possible (lots of folks suffering from chronic fatigue can’t) start on the basics. Order a tracker like a Fitbit, Oura Ring, Apple Watch or Whoop. Then pick an app that can help organize your data. I personally use Gyroscope. My tracking stack is a Whoop for strain & recovery and an Apple Watch for more generalized tracking like sleep, sleep and heart rate monitor. I use MyFitnessPal for food tracking. Strong for workout tracking. Calm for mindfulness, and Gyroscope syncs it for one dashboard. I also use an app called Welltory which uses HRV & blood pressure from monitoring it does in application as well as through syncing with Apple Watch.
An iPhone application folder with wellness apps including Gyroscope, Welltory, LifeCycle, Apple Fitness, Calm, Whoop, Endel, MyFitnessPal & Apple Health.
I also track my symptoms in a journal app called Day One as it’s the lowest friction place I can do simple logging of metrics like pain, mood and energy levels. I also use Google Sheets to keep track of my medications and supplements as I take upwards of 25 different pills and remedies a day (trust me I wish it didn’t work). While there is a lot of variance on workouts I always get hour of low impact walking (3 miles a day), ten minutes of mindfulness, and all my supplements. Like I never miss a pill. I’m happy to discuss my supplement stack with folks but here is a basic guideline of what I take that is provably good.
Step 3: Steadily Improve
Most people overdo it. You try to change a bunch of stuff all at once. Or you dive right into a big change. This is too overwhelming. And it can make you feel sicker (some folks call it a healing crisis). Just pick one metric and improve it by 10% over a week. Pick one activity you will do for 30 straight days. I said I’d write every day and here it is day 91. (Edit, I updated my stack on this post to reflect current use on day 355). The point is you can’t improve everything all at once.
Part of my success is simply telling myself I was going to run the experiment even if it was a failure. Biohacking requires that you don’t change up your variables too often or too quickly. You need to establish trend lines. The biggest mistake you can make is being “noisy” as you will never isolate the meaningful variables. And you won’t stick to it. So it’s a double fuck up. Clean reliable data matters. Don’t change too much too fast.
Step 4: Try Common Experiments
You don’t need to reinvent the wheel. Coming up with unique experiments probably won’t be necessary till you are well along your biohacking journey. My elaborate tests didn’t really start till this year after two full years of tracking. Start with common experiments others have shown to work. Fasting is a great place to start for metabolic health and fat loss. Walking makes a big difference in your resting heart rate. Being active once an hour has proven metabolic benefits. Try intermittent fasts and then if you see a benefit you can progress to 72 hour water fasts. Adding more protein to your diet is popular for a reason. Start with 20 grams at a meal and work up to a gram per ounce of your goal body weight. Eating more protein tends to shift your diet away from lower quality calories as it’s hard to eat a whole chicken breast and then eat a bunch of fried potatoes. Though I have tried. Work in supplements for whatever your bloods showed you to be borderline on. Vitamin D deficiency is common. If want to sleep deeper try magnesium at night. If you are tired B vitamins are proven. If mental acuity is your goal CoQ10, green tea and ginseng work for many people. Metformin is the top metabolic drug for a reason. If your lipid panel said you needed to lose weight or you have metabolic syndrome Metformin is your first stop. Like I said, there are a lot of proven hacks you can test out and incorporate into your life right now. Don’t be intimidated just work an experiment that has a high probability of success.
Anyone can begin biohacking with a goal, basic tools, and some patience. I’ve taken myself pretty far in the past three years. I’ve had great doctors but some of my success comes down to being willing to experiment with my body.
It’s only with hindsight that I realize pain has been a persistent companion in my life. If something is normal for you the grandiosity of ego can tend to make you assume its true for everyone else. I spent much of my life thinking it was normal to be in pain, to be tired, to feel unwell. Life is suffering right? As it turns out no most people are not suffering from debilitating pain. I was not normal.
I’ve been feeling well recently and when I have extended stretches of health the memories of pain fade. This is good as pain is an insistent companion. They tell you to ignore your pain or place it on a shelf or some other “removed” metaphor but I’ve always found this to be bad advice. You can channel all your focus elsewhere but the pain is there. And worse, now you are using all your energy to pull your attention away instead of what you may have preferred like work or a hobby. It’s a consuming experience one way or the other. You can feel the pain or you can feel the force of your willpower but regardless you will feel. Pain is demanding.
When pain is chronic you think you will get used to it. That perhaps it becomes a background noise after a time. The way you get used to a television or radio playing in another room. But it’s not really like that. My pain is in my spine. It comes from a swelling that chokes out the nerves. The worst spots for me are between where my bra strap would land and my mid back. At its worst it runs the length of my spine and impacts my ability to walk. There is no comfort to be found with this pain. Sitting up. Standing. Even laying down. It finds your attention. It does not give reprieves.
They say that pain is a teacher. This is a lie, at least when it comes to pain beyond understanding. I suppose understandable pain could be used as a correction, as part of a causal learning process. Pain beyond understanding, though … pain beyond understanding teaches you nothing.
I live with a lot of pain beyond understanding. When it grabs me there is little I can do but hope to survive. It consumes. You have tools to fight but more often the only reaction that makes sense is fighting to relieve it. As Ben said, it has nothing to give me. It teaches nothing in this state. It’s beyond sensory inputs. This pain envelopes you into another reality. And when it is relieved you pray it will never reappear again. I know that it will. But the fear of it makes me bargain with myself. I say I will redouble my efforts to fight for my health. As if I weren’t doing as much as I can. I remind myself I have pain medication for a reason and I should simply take it. Sometimes I do.
Pain doesn’t care. It isn’t an enemy. It simply exists and you pray the tools you have will relieve it. When a true 10 on the acute breakthrough pain comes all you can do is hope to survive it. And when it is relieved the sweetness of its passing is like no other pleasure. It’s like having your humanity restored.
As a dedicated shitposter I have got to learn to keep the takes to myself after 9pm. It’s feels like I’ve been following gossip about the perennial “platform versus editorial” since I was a toddler (in reality maybe since I was in college) so every time a new chapter unfolds I lap it up. Mostly because I’m a sucker for media gossip and this is a personal favorite.
Last night after my bed time I starting reading more Substack hot takes (if you aren’t following people are worked up about a program called Substack Pro and what opinion writers are or are not being paid by the startup) and decided to be a dork and say shit even though I knew I’d regret it. Not the shitposting itself to be clear, I never regret a take, I just regret doing it when I should be asleep. Two hours later I’m way too worked up to sleep. Twitter is a lot of fun and I’m a high energy kind of person. Despite me being dedicated to my healthy routines I ended up not sleeping till midnight and then got woken up at 530am. So I’m a bit of walking nightmare today as I’m really too old for late night goofing off even if it’s just on the internet and not a nightclub (remember those?).
So if you see me goofing off on social media after 9pm please tell me to go to bed. Do not encourage me. Don’t feed the trolls. And by trolls I mean me
I didn’t used to keep much of a routine. Startup life and Manhattan nightlife made for a lot of variability in my days. But the trick of losing your body to sickness means that you don’t need the novelty of nightclubs or the emotional highs of startup life.
My body now provides all kinds of surprises all on its own. I can feel terrific one day and the next for no apparent reason I’m practically immobile from pain. The frequency has gone down significantly this year thanks to modern medicine and a lot of biohacking but let’s just say I’m grateful I work on the internet so no one cares if I’m flat on my back typing in bed.
But one things I’ve found to be extremely helpful in managing the foibles of an unreliable body is a deliberate routine. I honestly wish I had learned the value of routine earlier in life. Maybe I’d be healthy now if I had shown the same dedication to supplements, exercise, meditation and sleep. Objectively that’s probably unlikely as some stuff is just chance and generics but man when you find something that works you want to retcon your whole life.
But there is a downside to routine. You cannot get sucked into work manias because you have to stop to meditate or take a supplement or get in a workout. Routines keep you from meandering as you can fill a whole day with good behavior. But life sometimes needs more randomness than a strict day of check lists. Today I felt like an entire disappeared to my routine and while physically I feel well I’m not entirely sure I got anything done despite having taking all my pills on time. I lost time between all the good things I was going to keep stable. Sometimes I worry that all this effort will keep me from the creativity and serendipity of a life lived without good habits. But then I might end up sick and back in bed so I hope it’s a fair trade. But I still worry I’d rather lose time to work binges or nights out.
First off I’ll admit that I don’t really feel like writing today but I’ve committed to “putting pen to paper” every day so I’m stuck with it. I have a dozen topics I actually want to discuss but I don’t feel like I’ve got it in me to be coherent.
I’ve been thinking about how the idea that all property rights are a gradient from violence to grift to institutional legitimacy and this is just how civilization codifies worth. I’m particularly interested in it because we’ve reached the NFT is a grift stage of the discourse but I’m not at all convinced that NFTs are a grift for the reasons people think.
And while I’ve made really elaborate jokes about NFTs, finance, crypto and semiotics with illegal.auction I’ve noticed people with vested interests in this category working out, really don’t want anyone to joke about it. It’s likely wise as we all have varying degrees of horror that property rights is always some degree of grift working towards legitimacy.
That we don’t like to touch on it amuses me. I suspect that the internal logic of wealth and money as always being abstraction guarded by state violence is just too much for folks. It hurts too much. It makes us angry. Surely money, wealth and inherentworth must exist in a moral framework? Good hard working people are rewarded with wealth right? If you want a truly excellent read on the subject of property rights, violence and investing I recommend this essay on emerging market investing and Deadwood by Ben Hunt at Epsilon Theory
Another topic I also want to dig into is environmental impact of crypto and energy equity but I don’t think I’ve got all the facts. I’m still very much in a skeptic phase when it comes to moralizing over the energy usage of crypto. As if crypto brought about the carbon apocalypse on its own.
I’m sure “crypto used a lot of energy” is a valid criticism until you remember we subsidize monsoon crops in deserts (they grow rice in California ffs) and we ship plastic trinkets across the globe while a plutocratic elite consumes the majority of our resources. Maybe moralizing about impact should come with some caveats on how many lives it might improve? I haven’t seen much discourse on this topic as American media leans towards a generic tech skepticism stance at the moment which is making them lean in on attacks as it’s the wrong people who are pushing the crypto agenda. But we deserve more than “environmental impact bad” like maybe it’s a net good to use this energy to decentralize finance?
By allowing the global south and the unbanked to have access to capital instruments we actually discover this is the best use of our energy resources and may distribute wealth more equitably. I don’t know yet and I’m not even confident I can find relevant statistics that won’t overstate one tribal position over the other.
At any rate none of these thoughts are coherent or useful yet but I’m thinking about how we codify wealth and property and what energy usages might be valuable for a more equitable planet. Don’t cancel me please.
