Tag: Energy

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Chronic Disease

Day 221 and Somnambulance

Around 1pm today I was overcome by a kind of drowsiness. I couldn’t seem to shake the feeling so I lay down. For the past 5 hours or so I’ve been in a not quite waking not quite sleeping state. I wasn’t dreaming but I couldn’t force wakefulness on myself either.

I had to crawl my way into just enough consciousness to call and text my therapist to let her know I wouldn’t make my session or group therapy. Had I not seen proof I left a message when I woke up I would not have been surprised to learn that I had been somnambulant texting. I barely recall managing the effort.

I had a medical procedure a few days ago so I am likely still recovering from the stress my body endured. But I’ve felt reasonably energetic. I was entirely unprepared to fall into a liminal state between consciousness and sleeping for most of my day. I could tell I wasn’t fully awake but I couldn’t quite tell if I was asleep.

I kept trying to force wakefulness upon myself only to find my mind falling further away from the effort. It felt like some horror movie effort where a character has been put under but is still aware of what is happening to them. I didn’t love it. But clearly I needed the sleep. I was just barely able to get myself up to take my evening medications. Certainly wasn’t what I was expecting out of my Monday but so it goes.

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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 Emotional Work

Day 196 and Exhaustion

I’m terrified of being tired. It’s the first sign of illness and a trigger of a cascade of traumas for me after fighting for two years to recover my health. The fear I feel when my energy flags is more than mere phobia. It’s the kind of gripping all consuming fear that stops all other emotions from surfacing. It’s a fear that stops joy and anger. It stops my my breathe and chokes out my chest if I pay it too much mind.

I’m already shedding unbidden tears probing a little at the edge of this fear. The fear that exhaustion will never lift sits in my body, scaring me into believing I’ll be trapped forever.

I’m more afraid of fatigue than I am of pain. Pain is complete and totalitarian yes. It limits your world sometimes in the extreme. But pain is not an enemy that cannot be overcome. When pain spikes or throbs I’m equipped with tools to combat it. It’s not that pain isn’t terrifying and all consuming. I’ve written about the challenges of chronic pain. How it robs you of your right mind. But it isn’t an enemy that extracts complete victory either.

I feel I can fight back. Light pain can be tossed out of my consciousness with mindfulness exercises. Even a slight self inflicted pinch can deflect pain. If it’s unbearable there are pharmaceuticals on hand. It’s not that I don’t find pain to be consuming, I do and it is, it’s that it doesn’t feel impossible to conquer. I have tools with varying degrees of efficacy that let me retain my agency with pain.

With exhaustion I have nothing. I fear exhaustion is an enemy I cannot best. There are no tricks for my mind that give me a boost of energy or remove the obstacle of feeling leaden. The tiredness is too complete to be overcome by mantras. There are no drugs for exhaustion. Stimulants can drag me out of bed but the crash afterwards makes it clear the effect was extracted under duress.

A doctor doesn’t mind giving opioids for a patient with spinal swelling but telling them you are tired doesn’t do much. What could they even give you? Caffeine? Aderall? Of course you are tired they say, your body is fighting inflammation. In this moment, I’m overcoming an infection and a poor reaction to anti-virals. An inability to crawl out of bed is a given. Nothing can be done. I just need to ride this out and hopefully it will lift.

But I’m afraid of the tiredness that has taken hold of me this past week. The fear that all of the work and money I’ve put into recovering my help might have been for nothing lingers. I logically know, and doctors confirm, that I’m simply fighting an infection and we had a slight complication with the medication. They say I’ll be feeling well a few days. They asked me to stay in bed for a few days. But I cannot shake the fear that it it’s permanent. The fear that I’ve lost all my progress is real. I just hope I can convince myself that feelings are not facts.

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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.

Categories
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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Emotional Work

Day 185 and Small Potatoes

I’ve been stewing on something for the whole day so I’ve not felt I had the mental focus to write. Plus it’s 4th of July and I was busy eating BBQ and watching Roland Emmerich movies. I’ve watched Independence Day every single year since it came out and that’s as traditional as Die Hard on Christmas.

The reason I was stewing this morning is I feel like I’ve been wasting my energy on something. It didn’t start as a waste but it’s dawning on me that I’m not the best at protecting and preserving my limited reserves. I say yes to say too much.

I’ve got to stop fucking around with small problems. If I’ve got the capacity to manifest shit into reality 20% of the time why am I using that up on small potatoes when it’s just as much work to do it at scale?

Why put my energy into solving smaller problems when I can swing for the fences? Why do I think small potato problems are worth an iota of my energy. I am the type of woman who refuses to cook because it’s an inefficient use of time when industrial society has packaged foods. So why the fuck do I keep saying yes to people and problems that I don’t think are worth my time when I won’t even boil water? What the actual fuck is wrong with me.

I just feel too much social pressure to say yes to asks. If someone gets me excited to help I’m terrible at stepping back. I got convinced I was a mean bad person when I said “no” as a younger woman. I was told I wasn’t being accommodating. I was told I wouldn’t be well liked if I wasn’t nicer. Now I’m beginning to realize this was potentially poor advice. Might even be a function of gender (got to be a good girl). Either way I’ve got to stop saying yes to shit.

I’ve got limited energy and time. We all do. But it’s especially true for me as I deal with a disability in my ankylosing spondylitis. A chronic disability means saying yes like an abled person is terrible strategy. I’ve got to play the game smarter, budget my energy and time like the limited resource that it is and get over any past perceptions I cling to about “being nice.”

You know what isn’t nice? Saying yes to something you don’t want to do because you don’t want to hurt someone. Then you hurt two people. And one of them is yourself.

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Aesthetics Background

Day 184 and Enthusiasm

“Nothing great was ever done without enthusiasm!”

Some Waldorf classroom recitation

I went to a type of school called a “Waldorf” school for primary education. It’s a pedagogy that believes education should balance intellectual pursuits with artistic and physical ones to develop a well rounded human. A popular coinage is “head, heart and hands” but that’s honestly way too hippie dippie for what is a very practical and grounded approach to learning to be a human that has need for physical, spiritual and cerebral training.

Instead of staring at books all day you spend quite a bit of time on more classical pursuits to balance out traditional subjects like math and histories with music, drama, and a wide variety of physical education. Now you may think ok that’s just gym or music class right? Well, sort of, in the same way learning the alphabet is useful for reading. You need building blocks first. Small children aren’t particular good with javelins, Greek tragedy or the flute so they start you out small. Think “Sound of Music” Do-Re-Mi but for every subject.

One of the techniques Waldorf uses to help children learn to manage their bodies (likely also emotions & mind) is regular recitations. You memorize poems, chants and pieces of drama. You then physically practice run in a group or individually. Often a sequence of rhythmic clapping, chanting, stomping or other ways of integrating your body to the mental act of memorization is part of the process. It can be as complex as a portion of the Bhagavad-Gita (yes I’ve done this) or as simple as a sports chant.

“Nothing great was ever done without enthusiasm!”

I’ve got a fond memory of a classroom teacher insisting we start the day with energy and enthusiasm by using what is basically an arena chant that would be suitable for cheering on a sports team.

She’d have us get on our feet and in unison recite back “nothing great was ever done…..without….EN-THUS-IAAAASMMMMM!”

We’d repeat it over and over again with a 1-2-1-2 beat upfront and then a pause between done and without, and then a great push to pull out the word enthusiasm, with well, as much enthusiasm as we could muster.

By the end the entire class would be all smiles taking huge breathes to push out all the air they could through their diaphragms to put as much emphasis on “enthusiasm” as they could deliver. We’d be standing tall with our shoulders pulled back to give us the maximum advantage for our breath work. I swear these kids had a better grasp on Wim Hoff breathing than an Olympian. For a 5th grader it made use of multiple lessons we’d been taught over the years on diction, posture, physical presence, poise, timing, control and energy. Lessons that then served us well as we went on to sing Handel’s Messiah or learn Greek wrestling.

Plus it was a terrific reminder that all great things require our full selves. Enthusiasm is the path to greatness. Sure hard work and intelligence matters but if you love something with enthusiasm that puts you in the right path. So I try to remember that if I want a big outcome for something I need to feel real enthusiasm for it. And I’ll recite that chant in my head. Because that’s one of the building blocks I use to create success.