Tag: Disability

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Chronic Disease Chronicle

Day 93 and Distrust

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.

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Chronicle

Day 92 and Creative Muscle

The more writing has become a daily habit the more I can feel the ebbs and flows of my own voice. Some days I feel a passionate need to share some story or insight, and others, I feel like my voice can barely muster a sentence let alone a full fledged argument.

There are days where fully thought through essays seem to emerge with little effort. As if I wrote them in my subconscious throughout the day and it’s only the slight flick of focus that brings it fully formed to the page. Other days I need to scrape at the contours of my mind to see what fancies or novelties has passed through my attention through the day. Often in theses cases a bit of zeitgeist has stuck in a crevice and I can pull it out and expand on it. I can take a small nugget and chew on it till I find the juice.

I don’t mind the days where I need turn my eye within. The self reflection and additional effort is what I think may slowly be making me a better writer. While I don’t struggle with needing discipline to write everyday, I do need to exercise effort to find ideas that haven’t formed yet. The daily nature of the experiment is building out new thought muscles. It’s making my thinker clearer, faster and crisper. The regular exercise of thought and mind, whether I’m inspired or not, feels as if it’s making inspiration strike more often and my mind see clearly.

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Chronic Disease Chronicle

Day 91 and Biohacking

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.

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Chronic Disease Chronicle

Day 90 and Health ROI

The American attitude towards healthcare leans heavily towards pharmaceuticals. Much of what ails us might be mitigated by nutrition, supplements, exercise or physical treatments. But we tend to prioritize a “one and done” approach that lends itself to prescriptions for any ailment you can pinpoint. It’s not unusual to be on upwards of ten pills a day if you are chronically ill each one treating a distinct symptom. You mostly pray they don’t have any interactions and that the cure isn’t worse than the disease especially when it comes to drugs like opioids that can form dependencies.

I’m not entirely opposed to this approach if I’m being honest. A wholistic approach is a lot of work and when you are sick having the energy to do a bunch of shit is unrealistic. Even as I’m rounding the corner on controlling my autoimmune disease I still find it time consuming and often exhausting to manage all aspects of my health. The meal planning, the physical therapy, the body work, the exercise protocols, the sleep regimens, the supplement routines (mine easily costs upwards of $500 a month and no it’s not covered by insurance) and the nonstop recording and monitoring is practically a full time job. And you can’t even tell if it’s working half the time with crashes and system cascades that require heavy duty intervention. It’s hard to spot signal in the noise but that doesn’t mean it’s not there

Being sick in America feels surprisingly similar to being a startup founder. You get dismissed constantly. The workload rarely relents. And progress is only visible if you are diligent about monitoring core metrics that might reveal a trend line. It’s no wonder that entrepreneurs can be avid biohackers. We record and measure and monitor and hope that some higher authority (a physician or a venture capitalist) will spot the the key inflection point that may change our lives.

I have over 1,000 recorded data points just on my usage of pain medications and it’s correlation to my functionality. Despite my meticulous tracking and my adherence to protocols, I regularly have encounters with medical professionals that discount what I have to say. Like a founder I may be an expert on my “startup” but a physician or other expert has a lot more longitudinal data. The question ends up being do you as the operator (or the patient) have some insight the professionals do not? Honestly it’s hard to tell. Being wrong is pretty common. Doctors and venture capitalists know this. So do you as the patient or founder. Trust in these interactions can be low because of this.

Unlike with a company where you can walk away, being a patient means you are stuck with it. I have to work through the blocks as if I don’t I’m resigning myself to a life of illness. Which isn’t to say I can’t tolerate being ill and disabled, merely that I don’t believe that “this is as good as it gets.” I’m happy with my life but I do believe it’s within my control to do and be more.

For me this has meant juggling the pharmaceuticals that control symptoms but don’t heal me alongside an elaborate functional medicine and biohacking routine. I think of these drug for symptom regimens a cash flow business that can do well but will always remain the business that it is without a creative owner pushing for more.

I don’t want to just run my “business” even if it might be a self sustaining one. I’m at a point where yeah I can live like this for the rest of my life. But I want more than having a store or a service. So I test. And I experiment. And I throw tons of time after protocols and treatments that may be woo or bullshit. Or they may in fact be the turning point that lets me be more. And if it is then it’s all worth it. Much of what I’ve done has been worth it. But how the fuck do you determine that in a system that has so little interest beyond simple solutions like a pill? If I had the answer I’d tell you. Until I do I’m spending my time on machines that shoot electromagnetic pulses into my spine and glugging down micronutrient slurries. I hope the hacks turn into sustainable growth channels. But I could have just waisted a few hours on nothing. Until then I’ll record the data and hope the trend line reveals something.

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Chronic Disease Chronicle

Day 81 and Good Patients

I don’t know why I feel compelled to act on a doctor’s opinion (literally every doctor) when I can think critically about any other form of authority. I’ve got some kind of deep seated fear of disobeying a physician’s suggestions in a way I just don’t with others traditional authority figures and I wish I could break it. American doctors love to prescribe drugs for every random symptom or blood result. And I’m fearful to say no. Even though I know I can’t be on about half of what I’m given

Absolutely had a anxiety moment this morning as I’m due for a metabolic blood work up and I am not sure I have the energy for the shaming if I “fail” that my endocrinologist will throw at me. I’m a healthy weight but I was overweight earlier this year and I leave in fear of that fat shaming coming back. At this point I just let her prescribe the drugs and don’t take it all. I’m sure I’m in for a lecture about some thing.

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Chronic Disease Chronicle

Day 76 and Lost Time

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.

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Chronicle Internet Culture Startups

Day 72 and Isolation

I’m an introvert. I do not draw energy from crowds or socializing. My energy comes from within. I like to socialize with individuals, in fact I enjoy one on one conversations quite a bit, but can easily be overstimulated by them and require a quiet period afterwards. Engagement with others draws down on my energy whereas with extroverts that engagement sustains and builds their energy. If you are curious about this framework visit the work of Carl Jung.

Despite the skill set being heavily weighted towards people skills, I suspect leaders in startup land tend to lean towards introvert. My suspicion is that it is a function of the heavily generative nature of the work, you are bringing something from nothing. To be able to consistently bring something new about you need quiet mindful time to yourself.

Sadly society, particularly professional society, is weighted for extroverts.

Open office plans, meetings, collaboration and buy in, managing up and down, all assume that that extroverted behaviors are the default positive positions for a team. Add in after office cocktails, team dinners and off site events and you start to see a pattern that privilege people for whom social interaction is enjoyable (not even considering if it’s possible or a family strain like parents).

Modern work is a battle between extroverts and introverts and the extroverts have definitely won. Which is weird as despite the Jungian tradition it may turn out that ambiverts, balanced personalities who exhibit both traits, are actually the largest group.

I’ve always loathed conferences as it depleted my energy stores for at best dubious content benefits. During the pandemic I’ve been much more willing to engage with events as instead of arranging for transit, getting polished for a professional environment, moving my productive work hours around the event, I can simply show up and learn. It’s miraculous and frankly I’m sad so many people want to move on from these accessible events as it probably means I’ll drop attendance entirely. I can say yes to a lot more if the accessibility of an event remains geared toward remote, introvert and disabled. You don’t have to be any of those things to prefer it either. Maybe you have kids and appreciate participating in the culture all those child free extroverted wealthy twenty somethings enjoyed all this time.

I’m afraid that post pandemic the extroverts will win work culture norms again. Even though we are all sick of the over scheduling and the exhausting nature of office and event culture, we miss it a little. And the boomerang back is likely to make it seem more appealing than ever. But I can’t shake the feeling that the pandemic is a bit like a societal hypochondria moment. We needed to be sick to heal our culture. Prioritizing one kind of person and their needs (the extrovert) has led to all kinds of inequalities and tensions. I hope we can come back with a little more respect for the culture and desires of introverts. I know I’ll be coming out swinging for more balance.

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Chronic Disease Chronicle

Day 71 and Caprice

I felt just terrific this morning. Woke up and had nary a dip all day as I went from work to chore with energy to spare. I often live in a bit of fear of the “bad” days when despite rest, nutrition, medications and supplements I feel like shit. It’s completely unpredictable which makes me feel like I live at the whim of a capricious god. Good days can feel equally bolt from the blue. I feel like I’m dying one day and the next I am hale and hearty.

Living life without much control is something all humans should probably make peace with, but I’m finding it especially crucial as I learn to live with a recovery from my health imploding two years ago. The trajectory of my health is one of continual improvement but scatterplot is jagged as hell as each day vacillates between health and pain. So while I can see that overall trend line is improvement I still get psyched out when the line takes a dip on a bad day. I am equally anxious about the good days as I seek to maximize every minute of feeling well by packing those days with to- dos. I always fear that the good day will never come again. And on the bad days I fear it will never pass. The one thing I can never seem to keep is that the data points themselves don’t matter it’s only the aggregate. And the aggregate says I’m getting better. But oh how the capricious health gods get me with their tricks every single time.

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Chronic Disease Chronicle

Day 68 and Two Steps Back

Last week was a bit of a disaster for me. I had a change in my medications regimen that triggered daily migraines, I got over my skis on a bunch of work projects and someone close to me is very ill. My doctor asked me to please reduce my workload as I’m still not stabilized to their satisfaction.

I’m pretty angry about it as I’ve been working hard on ridding myself of as many symptoms of chronic disease as possible. The possibility that I can be fully functional and healthy feels within reach. But it turns out I’ve got a few more months to go before I’m cleared to return to a full time load. Obviously the fact that I’m a workaholic addicted to having a large workload complicates things as well.

I actually feel quite well now as I’ve had a couple days of rest but I got pretty indignant that I couldn’t just push through especially as I have a pet project now in Illegal.Auction that I would like to promote. But instead I’m shitposting on Twitter and making viral tweets about monarchy and chaos magic. And watching a lot of television. Which is actually a sign of progress if you can believe it. Typically I struggle to intake information in any other form but written. So as they say two steps forward and one step back.

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Chronic Disease Chronicle

Day 66 and Moralizing Health

I’m sure there is a perfectly reasonable evolutionary explanation why humans developed a bias correlating health with moral righteousness. Jesus and lepers aside, teaching the herd that you needed to stay away from infectious individuals is what formed the “winning” population is probably a lesson some reply guy will shove down my face. Like I get it, fucking and producing offspring is what makes you Darwin fit.

It’s just a deeply stupid thing to continue when we have the scientific method at our disposal and can actually test for what causes disease. This isn’t to say that lots of behaviors we moralize around strongly can’t correlate to poor outcomes (smoking, alcohol, food) but depending on the person you’ve got countless other variables. Population level statistics are crucial for actually gaining certainty on a hypothesis and what happens “most of the time” but there are always edge cases. We shouldn’t let edge cases dissuade us from good policy that will benefit most of us. But we should always leave wiggle room and exceptions for the outliers.

I don’t even mean this grandiosely, more like if you are a heroin addict switching that to cigarettes is a better addiction substitute. Maybe you get lung cancer or heart disease but that’s still on balance the better outcome when faced with overdose. For me weed is a better drug comparatively than opioids for chronic pain. Would I be thrilled to require no drugs ever? Maybe! Or maybe that is just centuries of stories moralizing the clarity and goodness of our leaders who never once required aid or comfort on their journeys to power. Lol, sure humans love to retcon the stories of our historical victors. The only hero who didn’t try to write out the sinning part was Jesus Christ and we sure hate to be reminded of the failings of his friends and family. Mary Magdalene was such a slut amirite?

So next time someone shits on you for doing something that is unhealthy for the general population but healthy for you, I give you my full permission to tell them to shove it if they are being an asshole. Don’t like dunk people for sharing their joy at making decisions that improve their lives. But don’t expect that it has to be done to everyone’s lives.