Tag: Stress

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Chronic Disease Chronicle

Day 104 and Having HP

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.

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Chronicle

Day 100 and Rest Days

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.

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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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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

Day 88 and The Insistence of Pain

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.

Ben Hunt at Epsilon Theory wrote about the two types of pain.

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.

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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 Startups

Day 64 and Addiction

I’ve been working through unconscious mindset issues and self limiting belief systems as an active exercise the past few months.

I’ve been really hung up on the value of pain and discomfort. Somewhere along the line I became convinced that working hard is morally good. And over time that developed into an addiction to work. I got off on being seen as someone who never quits.

This workaholism eventually had the consequences of forcing me into quitting everything in order to survive my addiction. I didn’t have a choice at a certain point as it was stop being a workaholic or quite literally die. My health failed me so I could have a second chance. I’m still grateful that I chose life but not a day goes by where I don’t wonder if it was the wrong choice. What is living if I’m not killing myself?

Realizing that rock bottom was a choice was a bit of a shock to me. I always thought it was an external forcing mechanism that finally freed you from your addiction. I had a very Augustinian “make me good but oh not just yet” understanding of my addiction.

And because my addiction is considered virtuous I’ve had a lot harder time seeing the value of letting it go. We look down on drinking, drugs and other sins. Work isn’t on the list of seven deadly sins. Sure I get pleasure from working but I can’t separate it entirely from the external validation I got from being “good” especially from people I perceived as my betters. And because I had a challenging relationship with my father as a child (he is also a workaholic) this put me in a precarious position when dealing with older white men. In other words, anyone who will ever finance me or mentor me, as technology and finance has an extreme demographic skew. I was constantly in a place where I wanted validation from these elders to soothe my inner child. I would do anything to show them I was good and worthy. I’m sure there is a Biblical or Greek tragedy angle to a child so deeply committed to being sacrificed for their father.

All this was compounded by the feeling I got when people who were my peers put me on a pedestal. They wanted me to be a martyr as much as I wanted it. And some of them will likely never forgive me for not being their own personal Jesus.

This all leaves me with very mixed feelings as I know I hit my rock bottom and it’s time to leave behind my addiction. And it’s very much time to rid myself of enablers who pleasured and profited off my disease. But it’s so much a work in progress. I feel the desire to jump back in to work and say yes to everyone who wants my work. I love it and they want it. But I need to find a way to only ever commit to those who want me to be well and thriving.

Too many people profit off of the deep desire workaholics have to always be producing. Capital and eager teammates can easily see a workaholic as a better bet for making money. I’m sure most don’t realize it is predatory because they assume we can stop. The sad truth is I’m not sure I would have stopped. I just got lucky I became too sick to carry on. So this is me committing to only working with those who want me on their team if I’m healthy and “sober” because I’m not going back on the “bottle” ever again. I just hope it means my work will be better for it. I think it will but it’s one day at a time.

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Chronic Disease Chronicle

Day 63 and Directionally Correct

I default to action over inaction. Don’t know if something will work? Try it!

I’ve never struggled with paralysis by analysis. I intake a lot of information and then even if I’m not sure I’m entirely correct I’ll still jump if I’m confident I’m directionally correct. This had proved to be a good recipe for startup work and financial gain. But I’m learning this methodology is fairly shitty for health.

Medicine needs a little more patience and a lot more precision. Data points accumulate and you can only effectively progress if you can isolate what is causing distress. I fucking hate this. I want to throw a thousand drugs and supplements and protocols at my body and just move “directionally” towards health. Portfolio theory doesn’t really work on autoimmune diseases as it turns out.

Thanks to an incredible functional health doctor I have been making fast strides in my quest to control my autoimmune disease. My pain has been under control, my spinal swelling is down, my energy is up and my focus is clear. So I was particularly frustrated last week when adding a new drug to my regimen wasn’t clearly “correct” and I had no way to tell if it was directionally correct. I just have to wait it out.

I had terrible migraines. My pain spiked. My sleep suffered. And all I wanted to do was throw more drugs and supplements at the symptoms so I could get back to life. I have been doing more investing, advising more companies, and taking on more personal projects. I didn’t want to lose that. I love working.

But unlike with startup life I can’t just muscle through it and see if my bet will pay off. We have to be careful. Systemic cascades are bad in biology. Think cytokine storms and covid19 cases. I could easily undue all this progress in my pursuit of action over inaction. We need to be more certain that my body can handle this new drug regimen and winging it isn’t an option.

So I’m stuck being patient (pun not intended). I can’t push it. Directionally correct isn’t good enough. And that means slowing down so I can go fast later. In some areas you need higher degrees of certainty.