Tag: Health

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Biohacking Emotional Work

Day 215 and Leisure

I’ve got a bad relationship with work. Since I was a teenager I’ve been compulsive about the idea of hard work. I don’t know how I got to have a problem with the Protestant Work Ethic but it seems likely I developed it long before I read Max Weber and found it’s comforting rationalizations about work’s inherent morality.

I’m fascinated by things like commodity aesthetics, the history of consumption, and theories of leisure & status. Partially because I got a kick out of supposing I was a better person than those wretched lazy types. I wasn’t so sophisticated to sneer “rentier” class as kid but I was well on my way to veneration of hard work and productive capital. An economics degree finished the job.

This was compounded by growing up in a family that worshipped the culture of Silicon Valley. The innovation of computers and the people that worked all hours to bring their creativity to the world were the most important people on the planet. They hadn’t quite crossed the cultural rubicon of power that the tech industry has now, but the power of making the future was hard work and heady stuff even before it captured the mainstream. I wanted to change the world like the people my father admired

There was a time when computing and automation raised questions of a new era of leisure. If we could move all of the work we’d previously done manually to automated systems perhaps humans could ascend to The Culture of Ian M Bank’s novels. In a distant future of abundance, sentient AIs run industry and production, so humanity can do, well, whatever it likes.

But we haven’t achieved a post scarcity world. If anything accumulating resources and showing you’ve done it by the rules of the meritocracy makes hard work even more crucial. You’ve got to play and win two games. You’ve got to make the money and show you’ve demonstrated the proper status while doing it. It seems like leisure is losing the battle quite soundly.

I’ve been pushing all year to get back to hard work. I’ve worked hard at my health. I’ve committed myself to biohacking. But really what if the obsession with working myself to the bone is killing me? I’ve been completely relaxed as I prepared for a medical procedure this week. I’ve never felt better. Which forced me to ask myself if maybe I better come to live leisure like the way I have loved work. It might be a much better life for me. The future sentient AIs might approve as well.

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Biohacking Emotional Work

Day 211 and Laughter

I miss being able to enjoy time out in the world. You know that feeling when you’ve spent the last two hours at your favorite bar with your friends just talking about nothing? The ease that you feel being with your community and enjoying being together? The casual camaraderie and easy laughter that comes from no expectations time together has been lost to many of us. I miss it.

It doesn’t seem like those days are coming back for some of us in the near future. If I give too much thought to the impact of things like the pandemic I think I just spike my cortisol. That’s a stress hormone. The stress of reactivity is killing all of us. Constant panic over floods, heatwaves, outbreaks and all their downstream effects is overwhelming our capacity to live. And yes, granted a more globalized war with a changing climate is capable of killing us. But we don’t have to let futility do us in early. We can find our way into solutions. But only if we stay alive to do it.

I’ve been coping with apocalyptic nihilism by shitposting on Twitter. Yes I realize this is a popular upper class pundit class past time. I’ve got some self awareness. But it’s also the only thing that mimics being out socializing with your friends. And I think that’s worth a lot. Shitposting is good for the soul.

You don’t have to shitpost, but if you cannot find a way to lower your stress response, as we say in crypto, ngmi. Everything may be going to hell but you aren’t there yet. You’ve got a life to live, people to love and who love you, and a chance to be happy.

Fuck cortisol. It’s not good for you. That’s some metabolic poisoning eating away at you and you chose to let it kill you. There is no reason to give yourself unnecessary stress. Some stress is good. It makes you resilient. But stuff you opt into? Fuck that noise it’s only going to make you sick.

And despite whatever family trauma circuit you may be playing out in your head, YOU DO NOT DESERVE THAT SHIT. No I’m seriously disease and suffering aren’t a moral good. Everything might be rough but you need to find a laugh. It might just save your life.

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Chronic Disease Emotional Work

Day 201 and Take It Slowly

I woke up today feeling normal. I wasn’t in any pain. I felt rested. The excruciating exhaustion that has gripped me had lifted.

I was a little bit surprised as I’ve been fighting off a setback that has diminished my physical and emotional state. An infection required an anti-viral that just destroyed me for the last week and a half.

The relief I felt at having the energy and desire to do normal tasks was palpable. I started making “to do” lists and plans for how I was going to use the energy during the day. I bounded out the door at 8am to my favorite trail to get in a walk before the summer heat hit. I came back energized and immediately went to workout. And then I realized I was doing it again.

In my relief to have back a functional body I was setting myself up to be exhausted by immediately over doing things. . My enthusiasm to get back to doing “all the things” would again be my undoing. Some residual guilt over needing to get back to people was on my mind and I used this projected shame right back into myself. What a disappointment I was to people and clearly I must set it right immediately that I’d been late by a week. I needed to respond to startups, catch up on my diligence pile, and email back all the folks in my inbox plus I was behind on any number of fund tasks for Chaotic. I justified these obligations as a reason to beat myself.

I have often struggled with the feeling that I need to work as hard and fast as I can when I am physically well. Part of it is my general tendency towards workaholism. But part of it is fear that feeling well is transient and I need to make hay while the sun shines.

I talked myself down from it and kept a steady pace through the day. I didn’t rush. I took breaks. And I didn’t feel guilty or beat myself. Which was quite a relief. It seems I can learn to take things slowly after all.

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Chronic Disease Politics

Day 199 and Vaccination

I’m not vaccinated against covid-19. It’s not a political stance. I’d very much like to be vaccinated and have it work. But I’m in the small category of folks for whom vaccinations do not produce antibodies. And to make matters worse, the only way I could “potentially” produce the antibodies in response to a vaccine is so destabilizing my doctors don’t want me to pursue it right now. So before being super smug about how this is a pandemic among the unvaccinated and it’s a “choice” for a small portion of us it isn’t.

I take immunosuppressants because my immune system has gotten some dumb ideas about attacking my body. I have had anaphylaxis a dozen times and allergies aren’t even my primary medical issue. That would be swelling in my spinal column. It was bad enough at one point that I couldn’t walk.

I’ve tried a lot over 2 years since it was diagnosed to keep it controlled. I was on chemotherapy drugs for about six months (I don’t recommend methotrexate at all and not just because it’s mustard gas). I was on high dose steroids long enough to develop a chemical dependency on them that required supervised titration down. Plus it made me fat as fuck and that annoyed me. Eventually my doctors settled into the suppressant category known as IL, or interleukin, inhibitors.

These drugs fucking rock and gave me my life back. Thanks to them I can live basically like a normal person with the exception that I need to be careful as I’m more susceptible to infection. We are quite literally suppressing my capacity to develop immune responses. You kinda need immune responses for vaccines to work.

Immunosuppressants and vaccines don’t really mix. I had to go off them to get a flu vaccine and I relapsed so badly my doctor was like well I guess it’s going to be masking for you in the future during flu season. About 5 months later the pandemic hit. Fucking hilarious.

If I go off my IL inhibitors eventually I’ll relapse. It’s possible I can make myself less prone to inflammatory responses but it might all be bullshit. I go to a stupid amount of trouble and money and engage in a lot of woo to make the rest of my health as strong as possible so I am not as prone to inflammatory responses. Maybe it will work. But quite frankly I’m not interested in finding out right at this moment if I can live without the drugs that saved my life.

Why does all this matter? Because you need to be off of immunosuppressants in order to have a vaccine work. And I’m not fucking going off my suppressants. Nor is it recommend except in stable cases.

It takes three weeks to dose them out of my system, three weeks off them before a vaccine of any sort would have a chance of generating an antibody response, and then another 3-6 weeks of injections get back to a baseline of stability. (their effects tend to be cumulative). And that’s because I would only be able to get one stick J&J as I happen to be allergic to the PEGs that stabilize mRNA vaccines, so I have to do one and done. But that’s an aside.

Basically I’m looking at 3 months of intensive inflammation that will cripple me just to get a vaccine. Because of a host of other complicating factors my primary caregiver physician and rheumatologist have recommended against me getting the jab. It will be hugely destabilizing to me (which is its own risk) and even if I get it, we just don’t know if I’ll produce enough antibodies while I’m on the suppressants. It could be for nothing.

It’s basically lose lose for me. It won’t work if I’m on the drugs and if I’m off the drugs I’ll be so sick it’s a crap shoot if I need to be hospitalized for going off them. Which ironically would put me at even higher risk of covid exposure. My doctors do not love this.

With the Delta variant on the rise I don’t know if it’s actually worth destabilizing me or if it’s a risk worth taking. It’s a crap shoot. I isolate. I mask. We didn’t want to fuck me up. It feels damned if I do and damned if I don’t. And I feel super alone in this status as everyone is acting like it’s a choice. And yes it is my body and my choice. But what choice would you make? My doctors aren’t sure either.

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Chronic Disease Emotional Work

Day 195 and Waiting on Hand & Foot

I’m embarrassed that I need help with minor physical tasks. I’ve got an infection of the self sufficient Americana myth that seems to have taken root right in my very marrow. If you need something done you’d better do it yourself right?

When I was much sicker and undiagnosed two years ago, it felt easier to accept help because surely it must be temporary. There is no harm in needing help if you know you can pay it back tenfold? There is no harm in being unproductive for a time if you can pay it it back with interest.

But what will if can’t pay it back? What if I must rely on the kindness of others forever? Early on I struggled with little things like needing to use a wheelchair in the airport. I told myself stories like“I could walk if I just tried harder and accepted more pain” as I went through the concourse on the way to a hospital stay. I couldn’t pay back fellow travelers for slowing them down. And maybe no one minded that I was sparing myself pain for little inconvenience on their end. Perhaps I could accept small types of kindness.

But what if it’s not temporary? And what if it’s a significant amount of help! What if I do need help with basics for the rest of my life? Thanks to a recent trip my husband took I learned his running of the household increases my capacity by a full 30%. I could do everything just fine on my own but it would make my life much smaller. And it doesn’t seem to make his life any less enjoyable. On the contrary he shines when showing off his excellence in operational matters. It’s possible what I see as an undue burden is something he quite enjoys.

But I can’t quite convince myself it’s a good thing. The self audience myth has a deep hole on me. But if a third of my capacity disapates into tasks like cooking, cleaning, errands, and logistics but I’m enriched and energized by work like writing or working with the media then shouldn’t the choice be obvious?

And yet I still find myself embarrassed and angry about my limitations. . Why did it exhaust me so much to stand and wash lettuce? Or require so much rest to recover from a short run to the pharmacy. Those are small, albeit physical, tasks. My soul feels broken and my body a traitor with these small physical limits.

Whereas other pursuits can be done from bed. And even though it sometimes makes me sad it’s not always my choice, I don’t mind that my world is often limited to lying flat for hours on a mattress. I don’t resent it. In fact, it makes me rather happy. I’ve got the whole world available to me thanks to the internet. I can invest as easily in bed as from a fancy office. Twitter is just as good a connection to the networks of ideas and power as conferences or clubs. Better often.

The only part I resent is feeling like I’m a burden. Like I need to be waited on head and foot like some aristocrat or an ailing relative. Well not like an ailing relative. I am ailing. That part is the. But I can thrive in it with help. I just hope I’m not to embarrassed to take it.

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Chronic Disease

Day 194 and House

The downward pressure I was discussing yesterday is taking me out for a few days. My doctors are torn between whether it’s the virus I’ve been prescribed some exciting news drugs for, or if the exciting news drugs are simply too much for my body to handle. The minimum viable dose in pharmaceuticals can be tricky. Too much and you kill the virus and it’s host. Too little and the suffering continues on.

I was watching the tv show House last night. It seemed like an appropriate show to rewatch as when I first came across the show I wasn’t myself an idea “House” patient felt extremely soothed by it. Would I make to watch a doctor that gets to the heart of odd diagnostics? Who instead of saying “well the tests are normal” says “these tests don’t help us explain the symptoms” and carries on? Why yes I would.

I’m lucky to have a number of doctors who do the same. It makes watching the show enjoyable as I’ve sat through countless diagnostics meetings and drug experiments that sound exactly like the ones on the show. I recognize tests and treatments. I’ve been put on several of the drugs just for the two episodes I watched last night.

We are dosing down on the antivirals for a few days. I’ve been told to get some rest and not to add in any stresses that I can avoid. While I don’t think writing is stressful I do think checking off the box for my daily essay would feel like a relief. So I’m doing that a bit early and keeping it short. If you are inclined to send good energy my way or you are from a tradition that values prayer I would appreciate being in yours.

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Chronic Disease Emotional Work

Day 193 and Downward Pressure

I’ve had a terrific year (pandemic aside) with significant progress on my health. I’ve become used to seeing positive trends, especially within the last six months. But the last month has been a mess for me and the downward pressure is getting to me emotionally. I’m afraid. The fear of a setback is palpable.

I haven’t been able to pinpoint exactly what has been causing a dip in my progress or frankly if it is even a dip, as it could just be a few bad days. It may be that I’m just not progressing as fast as I could have hit some Pareto Principle limit and it’s just going to be a slog to get the remaining gains. Some of my metrics continue to improve (I’m seeing cardiovascular improvements still) but my energy, pain and inflammation seem to be going in the wrong direction.

I’m crushed by the exhaustion in particular. And sadly I know this to be real. Because I take immunosuppressants I am prone to infections. To combat one I was put on a course of antibiotics which seems to have some negative side effects. So now I can’t tell if I am exhausted because I am running an infection or because I’m having a bad reaction to the drugs. Could be both.

I feel angry at my body for this pause in progress. I’ve been working so hard at improvements. When I look at how I spend my time I am often overcome with resentment and envy of healthy people. It saddens me how much more of my life needs to be dedicated to doctors than a normal person. It’s especially frustrating as in the spring I was regularly noting how well I was doing and how much capacity I had to work.

Of course, the benefit of writing every day is I can go back and see what was going on. I’ve been doing plagued by the caprice of my body before.

The trajectory of my health is one of continual improvement but scatterplot is jagged as hell as each day vacillates between health and pain.

It’s my hope that this is just another local minima and I’ll be able back to my “normal” soon. Even if I have hit 80% of my gains I can manage with that. But it’s valuable to recognize the negative emotions as they come so we can let them go.

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Chronic Disease Emotional Work

Day 191 and Logistical Leverage

I hate logistics. It’s not that I am incapable of operational tasks, but I do not find them enjoyable or energizing. I’m happiest working from the 30,000 foot vantage point and most stressed when keeping tabs on the 1,000 foot details. Thankfully I discovered this about myself early in life and had the good sense to choose a life partner that feels the opposite.

My husband is a genius operator and loves logistics. He can find efficient ways to manage nearly everything. He is a COO both professionally and personally. He manages everything about our household. I used to feel a bit guilty about the fact but I’m objectively terrible at home economics as frankly I just get in the way when I try to pitch in. All those sit-com jokes about husbands who can’t fold laundry right? In our house it is reversed. Which is a bit embarrassing as I worked in fashion but bygones. I just get in Alex’s way and he would prefer not to be slowed down by my bumbling efforts.

Recently I had to take on life & home workload in addition to my own. He had to take his first trip since the pandemic began. I haven’t been without him since February of 2020 so it has been a while since I’ve had to manage without him. And wow did it show!

I maintained the same of basics into my system, the same routine, supplements, diet and treatments with the only addition of Alex’s workload. I only added an additional 2 to 3 hours to my time obligations, so roughly an extra 9% my day, but it had close to a 30% impact across all my core metrics.

Because I track so many biometrics on a daily and even persistent basis I know my physical and emotional baselines. Without Alex managing life, my physical capacity dropped across the board over two days. The additional household logistics, errands, cleaning & cooking & overhead dramatically impacted my capacity.

Within 48 hours all my body’s baselines worsened. My HRV went down an astonishing 22%. Whoop gave me recoveries at 33%. My RHR went up by a full 10%. My qualitative pain scores went from consistent 3s and 4s to a 7. My energy scoring went from a perceived 6 to a 2. Gyroscope dropped my health grade from 85 to 78. It was a mess.

It turns out that Alex has added significant capacity to my life. Work that takes him just a few hours a week enables me to thrive. It takes very little from him but it means the difference between barely getting by and having the capacity to work for me.

Maybe it wouldn’t be as easy for another person. Alex is a very high leverage person in general but particularly for me. 10% of my day for a 30% improvement is significant. If your spouse is the operator in your partnership it may be quite fun to quantify their impact. Nothing says I love you quite like proof of how much their efforts impact your biometric data.

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Emotional Work

Day 188 and Space

I over scheduled my day today. I figured it was fine as I left some half hour blocks between calls, pitches, errands, workouts and chores. That’s what most lives are like right? You get up, shower, exercise, get the family fed, go to work, have a short lunch break to eat at your desk, go back to work, then you’ve got errands and then it’s back to family obligations.

If that’s what most people’s lives are like it’s no wonder we are in the midst of a rebellion. I’m exhausted. I haven’t had a moment to think or self reflect at all. I feel so far away from myself after the parade of obligations. And I actually meditated and did thirty minutes of “brain training” on my at home EEG. And I went for an hour long walk! So why do I feel like I haven’t had any space today? Those things are restorative right?

It sounds incredibly luxurious when I put it down on paper. I’m doing shit to improve my brain function and I got 10,000 steps (I like to take calls while walking) so why do I feel frazzled? As it turns out I’ve actually faced this problem before. And thanks to my daily exercise of writing I put it down on paper. I can learn from myself.

I benefit from unstructured unencumbered time at rest. It’s not that I need it to be alone time or quiet time as much I need full on rest. I thrive when I have no reason to get out of bed. I do my best reading and synthesizing when my mind is free to wander without any obligation to anything but that space.

When I wrote that I meant it in the context of devoting enough time to active rest. But as it turns out I don’t just need rest on weekends. I need to give myself time in between tasks. I need to let my mind wander off instead of forcing it on to the next activity. I need to take some space to myself between each activity, even if it’s a nice one like a walk, to absorb and synthesize.

I’d encourage you to consider if you are giving yourself enough space to let your experiences integrate back into your mind and body. Sure we all have our obligations but maybe you’d be more efficient at them if you have yourself the space to breathe in between them. On that note I’m going to put on some television and go shit post on Twitter. I need to integrate my learnings from the day.

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Chronic Disease Emotional Work

Day 186 and Broken

I’m coming up on my two year diagnosis of ankylosing spondylitis. I’ve had two years of feeling broken as I waded though the long haul from being bedridden to now being reasonably healthy. But I’ve yet to let go of the feeling that I’m broken.

Being a productive worker has been a part of my identity for my entire work life. To experience two years of not contributing financially to anything nearly broke me. What value did I have? How could I ever recover?

But I’m not broken. I’ve got more limits on my time as I just focus on health and wellness to avoid a repeat of my medical leave. But I doubt most people would know or care. I’ve been doing some of the best work of my life recently. So why does this feeling of brokenness persist?

Some of it is tied to me making some mistakes as I transition back to workout full time. I feel I owe people my time and work as I let them down. I feel I have a debt to pay off (not a literal one but more emotional for having stuck with me when I wasn’t useful). So I’ve been tolerating some people and work that I should probably let go. It takes as much energy to work on small potatoes and worry oneself about as it, as it does to aim for the big projects and goals.