Categories
Chronic Disease

Day 507 and Better is Not Binary

A close friend of my husband and I sent me a sweet check in text message today saying he hoped I was feeling better. Our friend is a sincere and empathetic person. Because I know know he does care for me sincerely I said how I was actually feeling to him. I was feeling confused.

lol I never know how to respond to this sort of thing as occasionally I get regular person sick but I’ll never not be disabled 😂😭

“Better” is a bit of a loaded term for me. It suggests so much. Absolute improvement like my flu is over suggests better. Or perhaps improvement that will stay put forever is better. Or maybe it’s a good day in a string of bad ones and that’s better. Better can be though of in both binary and scale terms.

Default healthy people think of better as binary because once they’re good enough they are “better”. The flu passes. They get back to normal. But if you’re chronically ill or disabled then better is on a scale and you never get fully “better” but rather ebbs and flows. I don’t always know how to articulate this to abled well people.

If you have someone in your life who you think of as not being very social, I’d like to ask you to discover if it is because of a physical disability or ongoing chronic disease. Maybe they aren’t social as they can’t accommodate your pace but they would love to spend time together with you if you accommodated their pace. A lot of folks are chronically ill. And we like to be friends with you. We just need you to recognize we require some accommodations from you.

Categories
Chronic Disease Startups

476 and Temptation

When I am feeling healthy I love to over do it. Most days I feel basically fine. Which is a significant improvement over even two years ago. I was living a little low. But maybe once or twice a week now I will just feel terrific.

Today is one of those days. I woke up early after a restorative night of sleep. I didn’t miss anything on my extensive wellness regimen. I was just nailing the day.

The sad part about doing wellness because you have to for a chronic disease is that you aren’t even ever hotter for it. Healthy women be doing yoga & taking supplements and practicing wellness and it’s a fucking Instagram campaign. I do all that shit and at the end I’m “ok.” It’s actually pretty demoralizing. I engage in flawless yuppie next generation wellness because it’s actually keeping me alive.

With this context it’s clear that I resent having to take good care of myself. It feels like a burden. So when I have a really good day. When I’m just energetic and focused and, yes moisturized and thriving, I’m also plotting how to undermine myself.

Because I felt terrific I just hand to indulge in it I took a bunch of calls and did a bunch of portfolio work. I went for an hour long creekside walk to discuss some communication strategy with Alex. I was vibing. Until I wasn’t. I crossed some little threshold and realized I needed to pull back the energy expenditure. I recognized I have given into temptation this time.

Categories
Chronic Disease

Day 472 and Missing Out

I never had headaches in my twenties. Migraines were a cultural phenomenon I was aware of it never experienced. After I did fertility treatments about four years ago my body went though a number of changes for the worse. I developed an inflammatory condition. And I became acquainted with migraines.

My migraines are the light and sound sensitive type. They leave me nauseous enough I have a prescription just for that. I’ve tried a number of treatments for the migraines prophylactically, but only Imitrax really helps once it starts. If I’m lucky I can turn one around in 3-4 hours with medication and a cold dark room.

Today wasn’t a day where I could turn it around fast enough. And I feel sad and alone and depressed about it. I was supposed to meet friends for a nice meal to celebrate with them and I’m missing it because I couldn’t control the migraine fast enough. Alex my husband made it to dinner with our friends but but alas at home in a dark room waiting for my Imitrax to kick in.

I debated if I could force myself into showing up but it was decided the amount of pharmaceuticals required wasn’t passing a cost benefit analysis. I tried to make a case for it saying if I just tossed enough pain medicine at the migraine maybe I could do it. But the rational vote from Alex was a veto. And he’s right if it takes an opioid to get me out the door that’s not something I can justify for a social event.

The irony is I actually dislike fancy dinners out. I find them to be exhausting. Having to sit on uncomfortable chairs and socialize for two hours is very expensive energetically for me. It probably takes a day to recover from the energy expenditure and I often have to up the doses of my stabilizing medications. I tend not to say yes to them as it’s expensive for me and I don’t enjoy them.

So I don’t know why I’m so upset that I’m missing this dinner. But I am so upset. Maybe it’s because I’ve had months of stability without any issue. When I said yes let’s go I expected to be fine. The last time I recall having a major crash was in early February. Since then I’ve flown internationally, lived on my own, and made it to a crypto conference in Miami with little incident. So maybe I was due for a bit of a crash. Maybe it’s just inevitable that if you push you need to rest.

But I feel miserable, inadequate and guilty about it. Like I should have tried harder. Should have taken more drugs. Or at very least been more upfront that sometimes my body is unpredictable and I find it challenging to have be “on” and in public for social things that aren’t strictly speaking crucial. But now do you tell beloved friends that they aren’t crucial? You can’t really. I just have to hope I can do it. And mostly I can. But not today. Today I couldn’t.

I feel like maybe I owed my friends a performance. I can perform in even dire circumstances. I never miss a dinner or event or appearance at which I’m required professionally. But I don’t hold myself to that stand personally. Sometimes things happen and I just can’t do it and I have to let my body dictate my schedule.

That reality makes me feel isolated and alone. Because I can’t make the same commitments as regular people to socialize and enjoy normal things. There is always the risk that I’ll have a bad day. And I save my energy for work because I have to. So that means I don’t get to have a normal social life like other people. I don’t usually mind but today I do. Today I’m missing out.

Categories
Emotional Work

Day 462 and Action is Not Power

Action equals power in America. But at the risk of repeating some basic definitional shit, action is action. Power is power. They are not the same thing. I have a bias towards action as the famous Amazon aphorism goes. I think action is often a beneficial force. But I am learning that sometimes I need to be still in my power without turning to action.

It’s a challenging concept for me. I have more power by allowing it to flow through me. But I prefer taking action to acquire it. I’m in an industry and country where no one is ever satisfied. The need to acquire more is a looming mimetic desire. And the clearest path we see to acquiring more? Take action! Do a thing. Make a move. Be a player.

But sometimes power is found in stillness. The slow places. The quiet places. The interiors of our lives. We meditate and contemplate. All these practices can help us access the power we already have inside us. The capacity that existed all along and simply needed to be honed.

I wanted to beat myself for not seizing more power recently. Why wasn’t I being more aggressive? And then I realized I already had everything I needed in me. I don’t mean this as some bullshit thought leadering either. I slept till 1pm today because I was out late last night. I needed the stillness and rest so my own power can through. I could have been up and seizing the day but that would have only resulted in action and not power.

Categories
Preparedness Travel

Day 460 and The Tropics

When I was a New Yorker, the flight to Miami was the preferred winter escape for everyone from Upper West Side Jews to Lower East Side hipsters. New Yorkers love Miami. We’d all decamp from the grey for long weekend’s beginning in December with Art Basel and ending in February as the various winter equestrian circuits wrapped.

Every restaurant that was popular in New York had its own branch tucked away in some form of boutique luxury hotel. The clothing stores had branches down here too. Even our preferred gyms like Equinox had their Miami outposts. Miami was in my mind the “Winter Borough” of New York City.

So I’ve been a little tickled by it’s adoption in the pandemic years as the New “New York” because it’s still the old New York for me. But it’s never been a particularly viable replacement as an all year respite as it’s the fucking tropics.

Even though it’s only April the muggy sticky soul sapping humidity is out in full force. I was awake at 7am and went outside to forage for coffee and breakfast. I could barely make it a block before I was perspiring. It was 79 degrees and 86% humidity.

Maybe I’m just a wuss. I fully admit that I’ve never liked the heat. I can barely tolerate Colorado’s dry heat. So I feel like I’m wilting in the Miami heat. I’m just not built for the tropics. And I’m not sure society is either if you have to run air conditioning year round.

I don’t think I’ve got the stamina to survive a power outage in Miami. The preppers and doomers that can make it through hurricane season impress me. Imagine going without power for several weeks after a hurricane. Days of a 72 degree dew point and 86% humidity are survivable but just barely. Hot weather doomers are nuts in my book.

Categories
Travel

Day 458 and Jet-Set

I forgot what a pain in the ass it is to be on the road. I had three days back in Colorado after my trip to Frankfurt before I found myself repacking my suitcases to head to Miami. I probably shouldn’t have bothered unpacking in the first place.

I had a whirlwind of doctor appointments, injections, pharmacy runs and visits to various health care practitioners in the three days. Any kind of chronic health condition is a bit of a bad bed fellow with travel. Especially if you have medications that are controlled or require refrigeration. I’ve got both. So I timed my sojourn in Colorado to align with those pick ups and injections.

But that left me precious little time for other daily life type activities. I managed to sneak in a pedicure yesterday and it felt practically revelatory. But I’ve got so many other things to catch up that I’ve got no choice but to find a way to maintain normal life while on the road.

I have a round of blood work I need to get done before my next round of doctor appointments next week. Maybe I can get them down in Miami? They probably have quest labs. Doing a fasting lipid panel in the land of retirees seems kind of appropriate.

And while this may sound kind of stupid I really need a haircut. I just a point where it just can’t be put off any longer. It just started to look rough. So why not get it done in South Beach? It isn’t as if I’ve got a stylist in Boulder I love.

The muscles that come with life on the road are surely coming back if I’m considering things like blood work and haircuts. It isn’t the most glamorous part of being “jet set” but it sure as fuck is the most realistic. Travel has its own glamour and romance but you are never as far from the reality of your own life as you think. And maybe that’s a good thing.

Categories
Biohacking Travel

Day 455 and Jet Lag

I rolled into Denver around 420pm yesterday and I felt excellent about my timing. My ten hour flight from Frankfurt was quite pleasurable. There is something about long haul flights that are existentially quite satisfying, especially if the onboard wifi isn’t working, as one feels free from the outside world for the duration.

It was midnight in Germany when I landed so I made sure to have a coffee an hour or so before touchdown to keep me up for my time zone adjustment. My goal was to make it to 9pm Mountain Time so I could immediately adjust to my new time zone.

A slightly silly goal as I’ll be moving back two time zones in just a couple days as I’m headed to Miami. But I’m a day bird not a lark or an owl so I need my days to be productive. So staying up “all night” was on the agenda.

I managed to stay awake till about 845pm by keeping busy with unpacking and dinner and catching up on all the “couples shows” that I can only watch with Alex. Ironically about half of what I unpacked is going to get repacked shortly but I needed to do some sorting and replenishment. So I did my best to keep the adrenaline pushing me to activity. And it seems to have worked.

I was up this morning at 5:30am feeling rested and basically functional. The only issue I noticed was hunger. I was starving. I immediately got in the car and went to the good bagel place. I got a second bagel with plans to eat it tomorrow and then ended up having a second breakfast around 10am. And yes I still ate lunch at 1pm. And I’m starving now. Just absolutely ravenous all day.

My tracking apps seem to think my body is experiencing jet lag. Gyroscope said it was contributing to a lower health score and “shortening my lifespan” so that was anxiety inducing. I went for an hour long walk and my Whoop buzzed twenty minutes in. Apparently to indicate I’d hit my target strain. A leisurely stroll netted new a 8.8 score when I typically barely break a 4. Their system maxes out at 20 I think but I rarely get higher than a 10-12. And then Welltory gave me reds across stress, health and energy.

I suspect some of this is due to being back at altitude as a month is long enough to lose your acclimation. But in general I seem to be perfectly fine on my time zone and I felt mostly functional all day. I kept it light. Tomorrow when I plan to work longer hours will be the rest test.

Categories
Travel

Day 453 and 80% Rule

My husband Alex has this rule for travel he calls the “85% rule” for when to expect homesickness. It’s a pretty simple concept. You will feel the maximum amount of negative emotions as you begin the final days or weeks of your trip. But it clears up once the trip nears completion. You will feel worse when your completion bar is at 80% than you will at 99%. In your final day or even hours you will wish you were staying but two or three days before you will wonder why the fuck you aren’t already home

This rule holds true for business travel and personal. It’s remarkably consistent on short trips and as I discovered even month long excursions. I’m flying home to Colorado tomorrow which is a Wednesday. But last Thursday and Friday I was so done with being in Frankfurt. I just wanted to be done with it. I debated looking for earlier flights.

Thankfully Alex reminded me of the 80% rule. He encouraged me to feel the homesickness and sadness. Enjoy the discomfort even. And that by the time Tuesday rolled around I’d be sad that I was leaving Germany behind.

And just as he predicted today I was hit with the wave of happiness and nostalgia that comes at the end of a long enjoyable stay. I had to walk into the city center to get my Covid test for my flight back. As I finished up the errand I found myself slow walking back to the apartment to put off packing. I went by the big indoor farmers market to get a snack for the airplane. I veered over into old town to take one last look at the architecture. I even popped into a souvenir store to eye expensive cuckoo clocks and beer steins. I normally hate knickknacks.

I’m enjoying an immense wave of satisfaction and nostalgia. This trip has gone even better than my wildest fantasies could have imagined. I’ve reminded myself of my priorities and independence. It’s given me a new appreciation for my marriage and it’s importance to me. I’ve pondered been insights into my motivations and coping mechanisms. I wish I could stay longer to pursue the history of a city that perfectly aligns with my historical, economic and aesthetic history. I guess the 80% rule works. I’ll head home in the morning.

Categories
Chronicle

Day 449 and Lost Time

I lost some time this week. I was living on someone else’s schedule and it cascaded into a wash of hours where I felt like I was completely out of sync with the wider world as I struggled to get back in my own time.

I’m not at my best when I have to push myself to live on other people’s time. Everything shrunk down to my bedroom and my body and my own myopia about righting my sense of reality. I was in a lot of physical pain which pushed me mentally as well.

I started to feel genuinely better and on track around 5pm in Frankfurt. Technically that meant I still had a half day in California to work. But I’d lost the will to push. I needed to regroup. I am telling myself that it’s ok because it’s not as if I work a standard 9-5 job. I can take the weekend to find my way back to the timeline. And if I’m honest some of my best work gets done on Saturday night.

Categories
Chronic Disease Emotional Work Travel

Day 443 and Chores

I’ve got a mix of personal and professional and familial reasons I’m spending the month in Europe (mostly in Germany). But one of the reasons was to get some time apart from my husband Alex. Yes I know it sounds kind of shocking. What a bad wife!

We’ve barely been apart during two years of pandemic living. I also had an additional year or two where he was my primary caretaker during medical challenges. My reliance on my husband is something I am very forthright about. I’m deeply grateful for what he has enabled me to do. But we both felt like our marriage would benefit from being on my own for a little as the pandemic becomes more manageable and my health has become stable.

It’s been amazing and invigorating to be on my own again. Anyone who deals with me closely has noticed how much more inspired I am to be in a new place on my own. It’s enabled me to see some of my coping mechanisms more clearly. For instance, my inner child feels safer in the chaos of new things because she got used to moving a lot when I was little. That has given me a gift for startup work, but it also means that I can become resentful and stifled if I feel trapped.

But I’d be lying if I didn’t disclose that a big factor in needing to be on my own was to learn if I could do my own damn chores. Holy shit I still absolutely hate how much I energy it takes to keep me clean, watered, medicated and fed as a moderately disabled person. My husband is a natural caretaker and I will happily enable that.

It’s so much damn energy from my limited reserves to care for myself. Alex has always done it better than I do. But if I’m apart from him I don’t have the backstop of him picking up the maintenance work of my life. I wanted to know if I could survive it. In order to freely accept his love and help I needed to know I could live without it.

And I am. This Saturday was dedicated to grocery shopping, laundry, doing dishes and tidying the Airbnb. I had to lay down and rest because of the effort of my day “off” from work. But I did it. Kinda. I still haven’t put the comforter cover back on the bed. But I’m working my way up to it.