Categories
Aesthetics Emotional Work Travel

Day 531 and Overpacking

I used to be an expert packer. If you do some deep Googling on me you will find lots of travel tips as at one point I was the co-founder of a travel cosmetics company called Stowaway. I was on the road a lot and became quite practiced at getting my entire life in a carry-on.

I can’t seem to pull it off anymore. At first I thought it was because I didn’t travel during the pandemic. Then I blamed it on being modest disabled from all my various health nonsense. But I’ve just stumbled onto the real reason

I’ve got fantasies of having a life where I still do things.

By packing high heels and nice dresses and several colors of lipstick I am telling my disability “not today Satan!” Except then of course I don’t use any of it. Because I am in fact still disabled.

I packed an outfit for a black tie gala when I went down to Austin. Because you never know when you might appreciate having a gown on hand and it didn’t take up much space. Now mind you I still attended an actual gala, but I ended up wearing a tank top and camouflage pants. Crypto is low key that way.

While I am introverted, and not terribly keen on socializing, I haven’t quite given up on a world where I go out if I want to. I want to feel like I’ve got the option to say yes to a nice dinner or to a meeting up at a cocktail bar. Leaving behind my favorite pair of Gucci heels is cutting off some part of my life in my mind.

If I only pack comfortable clothing and sensible skincare I feel as if I’ve conceded something to my disability. If I don’t pack a nice dress, even if my entire trip is planned around being casually at home in an Airbnb, I feel I’ve somehow given in to the pain and fatigue.

I’m not entirely sure if this is something I can work through. Or even if I want to work through it. I hate having to make room for medication and supplements and knowing it means there is no room for a hair dryer or a second pair of heels. I’d rather overpack. I’d rather have some sense of optimism and ambition.

But then I’ve got to get through customs at Heathrow and I’ve got no intention of checking any of my luggage during a chaotic summer for travel. So it might be time to try getting back to traveling light. And that means fewer cosmetics and clothing.

Categories
Chronic Disease Emotional Work

Day 527 and Accomodation

Last night I was lucky enough to attend CoinCenter’s annual dinner. I’m a big fan of the work they do to advocate for better crypto policy. And their entire team is funny as fuck on Twitter.

But I had a moment of utter embarrassment when I arrived early in the cocktail party hour that was taking place outside. It was over 100 degrees and Austin City Limits has hard concrete floors. There was no way I was surviving 45 minutes on a hard surface standing without a chair in the heat. But they had not opened the doors to the dinner space.

I got completely flustered. But my husband Alex was able to immediately take control of the situation. He asked a security guard if we could go inside. It was a no go. Talk to the front of house. The head publicist was immediately sensitive to the situation. Alex explained that I have ankylosing spondylitis which makes me invisibly but variably disabled. Heat swells my spine and makes it a struggle to stand.

I was absolutely mortified that I couldn’t manage being outside for the cocktail hour. The embarrassment and shame of needing to asl for a special accommodation felt overwhelming. But it was too hot for me to be comfortable and there was no place I could rest comfortably. It was either ask for help or go home. And blessedly my husband has the wherewithal to ask.

The publicist brought us back. The only other person in the dining was Senator Gillibrand getting settled by her team. And then suddenly it wasn’t awkward. The staff completely understood. It wasn’t putting anyone out to be let in early. It was completely fine. I had been willing to leave rather than put anyone out. It no one was put out. Everyone just wants to help.

Categories
Aesthetics Startups Travel

Day 526 and Out of Practice Yuppie

A well dressed, tall, friendly looking white gentleman tried to join me on an otherwise empty blue velvet couch that I had deliberately planted myself in the middle of to avoid socializing. All that was missing was a “closed for business” sign around my neck.

I had attempted to tell him “no actually this seat is taken.” I was confused he didn’t immediately pick up on my body language. I had spread my entire body across the couch and had intensely “don’t come here” body language. I had my purse down to take up more space. I laid my hand with my wedding ring on my knee so it’s instantly visible. He didn’t pick up a single visual cue. I tried verbal. I literally shouted at him that no he wasn’t welcome to join me. “This seat is taken!” Didn’t make a difference.

I don’t think he could hear me as he sat down and tried to strike up a conversation despite his obvious discomfort clinging to the edge of the couch with half a butt cheek in mid air. He tried a few lines of conversation as I doggedly ignored him. I started a tweet and angled my phone screen towards him so he could see me typing complaints. Didn’t help at all.

I really had done everything I could to claim this space as my own. The couch was directly beneath an air vent trying to push cooler air into the crowded house bar. It was as hot inside the bar as it was outside but this one area had modestly more airflow making the summer heat at least breathable.

Which is to say it was over 100 degrees inside the old house. The Rainey Street bars in Austin are all converted old historical houses with wide open full floor windows and open doors to allow people to enjoy backyards with twinkling lights and hipster backyard games. These bars are a cultural treasure in March for SXSW when everyone enjoys the mild 70 degree early spring. In June during a heatwave they are a hellscape for yuppies who have simply forgotten how to socialize like normal human beings.

I was engaging in some incredibly rude behavior yes, but the bar has no other visible seating near an air vent and even the 5 degrees of lowered temperature and the moving air helped a little. I was wearing loose comfortable clothing but it was still intolerable. I regretted not sourcing a wheelchair for the week but then again none of these houses are accessible anyway. It was the only spot in the entire bar where I could even attempt to mitigate the effects of my invisible disability.

I could feel my spine starting to swell within minutes. Ankylosis is a winter disease. Heat and humidity swell the spine and that pain will radiate out to a kind of ambient full body throbbing intensity that cannot easily be ignored.

Actually, pain is just like the heat in that way. It overtakes your willpower slowly but inexorably. Quietly it makes itself known like the stillness of Joseph Conrad’s Jungle.

“And this stillness of life did not in the least resemble a peace. It was the stillness of an implacable force brooding over an inscrutable intention. It looked at you with a vengeful aspect.”

Joseph Conrad “Heart of Darkness”

The amount of determination you have to play mind-over-matter games is simply a fight against time. Eventually you get tired from the effort. You pray you don’t let it take you to the dark places it took Kurtz. But you know one day it could take you too.

Eventually my husband came back. He’d been searching for a bathroom and our hosts for the evening. The yuppie next to me pretended to ignore him. He sat for another two minutes or so just to give the impression he’s weirdly close proximity to me was on purpose as a resting place and not at all an attempt to strike up a conversation with a woman who did not want to talk. A tactic we’ve all used once or twice to conceal a social faux we didn’t mean to commit.

Alex and I used to attend parties like this all the time. We were aggressively on the circuit for both tech and media events for well over a decade. He used to produce TechCrunch Disrupt in a long distant past before he transitioned into being an operator at early stage startups. Then those startups matured to established companies. And now it’s become clear we are established professionals.

We no longer need the social circuit. Networking has lost its payouts. More people want to meet us and ask for things than the other way around. We’ve made it. And it’s a good thing too as the social contract is breaking down all around us. Yuppies have forgotten their manners as we are all out of practice with the basic niceties of the social season. Everything from how we approach someone to begin a conversation to whom we may invite to a private event is now fraught. Hell I can’t even remember how to apply professional makeup anymore so I can’t look down on a man looking to chat. We’ve all lost some of our humanity over the pandemic.

And I find myself mumbling “the horror, the horror” as I walk myself back to the hotel because the streets won’t allow taxis in the downtown core. The transition from soft times to whatever comes next is full of unexpected surprises.

Categories
Biohacking Medical

Day 522 and Tracker Jacker

I started an experiment with one of my tracking apps called Gyroscope at the beginning of the year. I took pictures of every single meal. For $150 they analyzed all of my meals assigned me a virtual coach to help me improve my total health scores across all categories including food, exercise, sleep and mood. A few days ago my husband physically took my phone away from me and canceled it. The experiment was a failure and it was it Gyroscope’s fault.

Personalized healthcare is a bit of a noble lie. They do give you advice that is somewhat personalized to you as long as your body is within the baseline of what we recognize as healthy. If you are within one standard deviation of the mean then it works great. These tools improve your health. Just remember most of our baseline data is from healthy, young, white, men. This isn’t a woke thing. That’s just the population with the most data.

It’s hard to give someone like me health advice. The basics are designed for otherwise healthy people that need to improve their activity, weight, sleep, and basic nutrition so they don’t become sick in the future. Maybe their biggest issue is being a bit overweight and sedentary. Most people do in fact need to move more and eat less and go to sleep on time. Chronically ill people, or those coping with an acute viral infection, still need to eat good nutrition but beyond the basics it gets more complex what we should recommend.

The coaches at any health app I’ve ever used have kept trying to give perfectly sensible guidance about activity and nutrition quality and lowering stress levels. I am sadly an extremely weird edge case so shit like walk more can actually be bad for me sometimes. Sometimes doing absolutely nothing is actually what someone with my medical history needs. And tracker apps have a tendency to go berserk when I need two or three weeks of bed rest. They go full red alert trying to make me get some exercise when my doctors are tell me any exertion is bad.

The straw that broke the camels back on the $150 a month experiment was getting influenza in May. It completely imploded all of my metrics. As a serious viral infection tends to do. I couldn’t get in any steps as I was basically bedridden. My food intake got weird as I was in Montana with friends and house hunting when I got sick. I had one perfect week of high protein and vegetables and then as I got sicker and sicker it was anything I could be coaxed into eating. There were two meals of milkshakes from Five Guys and that was considered a lucky break. Coughing and exhaustion sometimes means sipping a high calorie frozen dairy product through a straw is as good as it’s going to get.

As my metrics got worse from the flu and tracking food become a pointless exercise, I gave up on even trying to walk my very nice coach through it. There was nothing to be done on assigning me any health activities for weeks. I couldn’t exercise. Meditation did nothing to improve core metrics because I was fighting a massive infection. My sleep was shit because again fighting an infection. My nutrition was hit or miss as my throat hurt and my stomach struggled with new medications.

The renewal snuck up on me. I had wanted to say good bye to the coach. To let her know she tried. To reassure the Gyroscope teammates that my failures didn’t say much about them and how they coached people into healthier behaviors.

I’m a woman with overlapping chronic conditions that got an acute infection and there was no real way to come back from it in a short period of time. But I was still so exhausted and couldn’t bring asking Gyroscope for a pause (a sick break for fitness apps would be a killer functionality though). But my husband remembered the auto-renew date. So he just canceled the entire thing. Boom gone. Fuck off.

I opened the app for the first time in weeks today to at least turn back on the basic tracking so I didn’t lose any data history.

I like how the app does data visualization. I have no clue if I can track nutrition on the base level of product on Gyroscope. Whoever does their pricing tiers has changed it so much I’ve lost track. In the past I found it impossible to input nutrition into their tracker. It was amazing to have the app do it automatically. I relied on their team doing the macros not because I can’t do it myself but because I couldn’t figure out how to physically input it into the app. So I’m a little sad about that. But not sad enough to pay $150.

Categories
Chronic Disease

Day 517 and All At Once

I had insomnia last night. Earlier in the day I’d done a treatment for my spine and I felt terrific afterwards. I let the feeling of being without pain amp me up and then couldn’t come back down from it in time for bed.

I should have taken an Ambien and quietly read a book but, because I’m always worried about over using any type of pharmaceutical, I decided to wait and see if I could fall asleep on my own. Not that I helped myself in the matter. I kept my phone open and scrolled through such worthy topics as “what is Cat Marnel up to” and a meme account called tee-shirts that go hard.

I often find myself struggling with the decisions of “past me” when it comes to sleeping. I was in so much pain today I found myself unable to concentrate. The correlation between a bad night of sleep and a flare in symptoms is pretty clear. Living in a linear manner is one of the downsides of the human condition.

Around 4pm or so I had to tap out of the day. Forgoing the Ambien last night in a fit of false virtue meant I needed to a far worse drug today. I wanted to fight it but I just couldn’t. I slapped on a THC patch and put on Everything Everywhere All At Once. As I let the chemicals sort themselves out, I was reminded that time isn’t real as Michelle Yeoh made her way across the multiverses. The pain passed. Time did what it does in my human perception. And I’d survived it.

Categories
Emotional Work

Day 514 and Get Your Mind Right

Back when I was in my twenties Gawker was at the height of its power to anoint local stars in New York City. There was one personality I just thought was the funniest and most incisive judge of the human condition. She was woman whose slogan was “Girl, Get Your Mind Right!”

Tiona Smalls had a column on Gawker and eventually turned it into a burgeoning self help empire with tv shows and books. It looks like she is now a realtor so maybe internet game is fickle. I didn’t see any of her later pop culture work. But I did read her Gawker column religiously. I liked her no nonsense attitude.

The premise of her first book, which landed her the Gawker column, was that you’ve got to stop doing shit that isn’t getting you what you want. Hence “girl, get your mind right.” It was nominally a dating advice book. I mostly took it as a basic kind of self help.

I feel like I could use Tionna right now. I’m just emotionally so fucked by the last month. Granted I’ve made some pretty major life decisions in the last thirty days but it doesn’t feel like I should be so wrecked. I am absolutely blaming the flu for kicking up chronic inflammatory shit. Watch out for long Covid folks! Viruses have a weird tendency to go latent. But like really being sick isn’t an excuse to have a bad mental state. I’m practically professionally sick so this shouldn’t phase me.

I’m thinking of maybe going to Europe for a bit. Enjoy that the turmoil in the markets means things are a bit slow for work. While everyone figures out how much to freak out about a recession I might as well reset my central nervous system with some down time. But whatever happens I’ve got to get my mind right.

Categories
Chronic Disease

Day 513 and Pain Myopia

It’s a testament to how excellent my health has been for the past five months that I’m absolutely indignant about feeling shitty today. Last year feeling shitty wouldn’t have been a surprise. It was more like my default to be in constant pain.

Today my brain was fogged, my energy was low and much of that is tied to my pain being just unrelenting. I’ve been riding between seven and ten on a ten pain scale for the past two weeks. Infections tends to set off all of my chronic issues. My pain is tied to the legacy of old illness. If you think long Covid is bullshit, I can assure you that many significant infections leaves behind post-viral bullshit that can fuck your long term quality of life.

Pain is a steady companion in my life. In five hundreds blog posts I’ve mentioned pain ninety four times. Even I’m a little astonished looking at that number. Twenty percent of my life has the dark overhang of pain. I’m in pain more than that, I’d wager it’s about half of my life if my logs are correct. But 20% is about right for when pain is so present it’s at the forefront of my consciousness.

And that’s with assiduously managing it through medications, lifestyle and nutrition. But to realize that pain on the forefront of my mind 20% of the time feels a little bleak. It seems like a miracle I’m as functional as I am. It’s a miracle anyone is every functional with pain at if I’m honest. Pain is a myopic master.

Categories
Emotional Work

Day 512 and Not So Glamorous

Remember that respite I had yesterday from the flu? Yeah me neither! I barely crawled out of bed this morning after some pretty gnarly dreams. My subconscious was going through it.

I had a three hour session of biofeedback yesterday working through some of my self limiting beliefs. It’s truly wild how you will just perpetrate the worst emotional violence on the people we love the most. Alex and I in particular love acting out various O’Henry stories in our marriage. Gift of the Magi is a particularly favorite where we will actively sacrifice something we love for the other only to discover we’ve destroyed the very thing that our partner loved. It’s a super fun cycle and every time I think we’ve found a way out of the cycle we manage to do it all over again. The problem is the glue.

So I was a bit frazzled today from working through all the emotional stuff. I need to stop giving Alex power by letting him take care of me. He needs to drop care taking me. You know standard marriage stuff. I can write whole love letters about it. Anyway I digress.

I was a bit fried today as I was recovering from pushing yesterday. I happened to have a friend that wanted to talk about how I was doing. I think he was expecting a more glamorous even sexy answer. People often think I’ve got a more interesting life than I do. Which is funny as I feel like I write about the mundane details of chronic disease with some frequency. But today I was not swanning about in Europe or writing love letters. I was in a dark cold room fighting off a migraine and some spinal pain. Because sometimes life just isn’t all that glamorous. And honestly that’s ok.

Categories
Chronic Disease

Day 511 and Respite

I didn’t feel like shit today. One of my doctors made a suggestion for how to spend up the post-viral malaise of this flu. I woke up feeling at least a little bit more human this morning.

I knocked out the first draft of my talk for Consensus. A task that has felt so overwhelming I’ve now blogged about it three times in one week. I am never prone to procrastination when it comes to writing so I know I must have been super sick if I felt I couldn’t write. That’s literally the one activity I’ve completely taken the fear out of through daily repetition.

I was able to do all the various “living” activities today too. Basic tasks like showering weren’t overwhelming. I was able to make progress on odds and ends for moving life forward. Making decisions about stuff like what to eat wasn’t hard. Basically I felt normal.

I am not sure if this is a respite from the flu and it’s aftermath or if it has fully broken. But I’m going to enjoy it with an early evening watching television and fucking off. All my downtime doesn’t have to be sick leave.

Categories
Chronic Disease Startups

Day 508 and Deficit

I woke up feeling reasonably ok today. I slept well but checking my trackers I learned my recovery scores were pretty low. My HRV was dipping into 30% recovery territory and I had a low blood oxygen count. I’ve been recovering from Influenza A so it’s not a surprise my lungs are struggling. But I tried not to let some bad data psyche me out. Maybe I was ok. I told myself I just needed to stick to my routine as I can’t let myself get into a physical deficit.

So I went about my morning routine with some optimism. I got some coffee and made breakfast. I took several rounds of supplements. I did some basic grooming. I felt basically human. I was all excited to dive into work from the second I woke up. I was so excited I’ve been dreaming about the presentation I’m giving at Consensus. I literally woke up with talking points.

And then at around 10am I realized I’d used up all my functional hours taking care of myself. Fucking figures. I am already in a physical deficit from this flu. It’s scary for me to be in a deficit as my favorite coping mechanism is to engage in workaholism. I over prepare and over work and I make demands of myself that only sabotage the end result. It’s entirely counter productive. It just looks socially acceptable because of the Protestant Work ethic.

So I need to calm the fuck down and accept where I am and that it will still be good enough. I know my shit. It’s worth it. And I’ll deliver on better than the average midwit. Honestly even acting like this is kind of midwit. The real galaxy brains would just be vibing it anyway. But it really is amazing how easy it is to fall into midwit fear based patterns. Believing in the bigger broader math of your own life is really hard because so much of our own ego is rooting for us to indulge in our worst impulses. So I’m going to calm down, not worry about my energy deficit and continue to do the work. It’s not glamorous work. It’s mostly making good decisions day in and day out. But then compounding kicks in.