Categories
Emotional Work

Day 259 and Easing into Habits

Considering I’ve been writing every single day for two hundred and fifty nine straight days you’d think I’d have encountered more writer’s block. But I generally find myself capable of putting the proverbial pen to paper. Well in this case it is thumbs to mobile application layer but that doesn’t sound as evocative.

Even today when I had no discernible topic at the ready I am finding that words will spill out so long as I make the effort to form a thought and codify it to written form. While I had the notion that I had little to say today I am still able to say something. I am saying something about having nothing to say but it’s the act that counts.

It’s not that it’s necessarily a worthy entry, but rather a reminder to myself that the act of doing forces it’s own discipline. It’s practice. I am learning that doing something can be easy as long as I let myself relax into the momentum of doing it without expectations or pressure. This must be what all those sports speeches about practice are on about.

Seeing writing as a habit rather than an inspiration or performance likely helps. I’ve come to view the activity as similar to exercise, taking vitamins or brushing my teeth. Perhaps it’s more cognitively demanding but it’s no less part of the daily rhythm.

I’d like that to be true of more of the activities in my life. Being able to view professional necessities as habits is a sure way to see them not as exhausting “to do” lists but rather enjoyable easy daily practices. Sure it will start out harder but eventually it will become easier.

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Chronicle

Day 257 and Back to School

Today felt like the first day back to school. Everyone has finally returned from their various summer vacations and I mean that mostly mentally. People are back and focused. The whole damn day was nonstop for me. Like a shift happened overnight.

It’s not that everyone I know actually went anywhere this summer, quite the opposite, most people seemed to have stayed home. But there was a kind of mental “out of office” that pervaded. Maybe it was a bit despondency in certain parts of my network that “hot vax summer” never came to pass. August was a frenzy of people canceling shit.

I kept hearing stories of people that were living normally but I honestly didn’t know anyone that didn’t cope with the Delta surge in some capacity (even if it was simply to say fuck it). Everyone I encountered of all persuasions just seemed to be struggling to live through the summer.

And then today all that lethargy felt lifted. None of the basic on the ground aspects had changed. And yet a levity was in every conversation today. People were planning again. Projects were moving forward. Plans were being made. Big school is back in session energy was there.

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Chronic Disease Emotional Work

Day 248 and Trusting Nothing

I am learning to appreciate the value of doing nothing. I have always struggled with the human “being” part of the equation. I would prefer if we had been called human doings. But I’m slowly being convinced that’s just ego talking.

I feel terrific if I do nothing. I don’t even mean doing things you might consider recreation. I mean I don’t do a damn thing but still in bed flat on my back. I let my mind wander. I’ve learned that leisure isn’t my style. I can’t do something and experience it as nothing.

Maybe I’ve got some kind of struggle with getting and staying in a parasympathetic state. Maybe I prefer the fight or flight. But it is in the rest and digest state of laying down that I finally feel at ease. It’s from where I bring myself back. It would be nice if I fully relaxed when doing my nails or hanging out with other people.

But as the only thing that truly gets me into parasympathetic is stillness I will trust that nothing. I’ll remind myself I need to do it. Maybe I’ll even be on of those people that calendar it. Sorry I’m out of office as I need to lay flat for the day. Come back tomorrow!

Categories
Chronic Disease

Day 240 and Working for The Weekend

I forgot how great it feels to be so enthusiastic about work that it absorbs every viable hour of your weekend. I used to feel this way about work all the time, but as I’ve struggled to adapt to working with a chronic illness some of the joy got stripped away. It became all about juggling self care, rest and moderation. And I hadn’t found my balance yet.

It isn’t so much that work didn’t hold my attention, on the contrary, rather I became afraid of letting myself get too absorbed. If I overdid it and missed a medication or a meal or even a sign that I needed a break I’d find myself in pain. I’d crash if I wasn’t careful to watch my time and energy.

I would get into awful start stop cycles that gave me the worst of both worlds. I struggled to sustain a flow state because I was constantly vigilant for needing to take care of myself. And I’d beat myself up when I needed the rest which made it even more challenging to sustain the health I felt guilty for not having.

“ I feel bad. I’m going to take today off. Ok but make sure you feel so guilty about it you don’t get any real rest.” Dino Comics

But something has shifted for me recently. The fear and doubt that has hung over my attention is lifting. I am beginning to trust that I can work and break without hurting myself. I can accept breaks more readily than I used to. I don’t feel as if I need to be as vigilant to watch for signs of hurting my body.

Today I was able to enjoy multiple flow states. I worked with a founder on their fundraise. I worked on some writing for my fund Chaotic. I briefly felt overwhelmed, and while I did panic for a moment I stopped and rested. I asked for some help. The problem got solved. And now I feel satisfaction at a good work say. No pain. No crash. No exhaustion. No guilt for taking breaks. Just the quiet joy of having achieved my goals for the day.

Categories
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.

Categories
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.

Categories
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.

Categories
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.

Categories
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.