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Medical

Day 503 and Halftime

I really thought I’d kicked the flu this Monday. I drove back from Montana and I was feeling amazing about my life and my decisions. And then yesterday I just straight up crashed back into symptoms again.

I managed to both write and correctly tag and post while I was riding a modest fever high. Which is pretty fantastic. That’s how you know your habits are good. I was able to maintain my writing schedule on the strength of the rhythm alone. My husband who got tagged in yesterday’s post on Twitter was impressed that I was actually coherent. Practice really does make perfect.

I’m a bit annoyed that the flu had a halftime show. Now I’m fighting out the second half of the game and I probably didn’t take advantage of the respite of having a decent day or two. Now I’m back in the storm, to use an entirely different metaphor, and I’m upset the eye has passed.

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Medical

Day 502 and Fever

I had a late lunch today. Maybe at 3pm or so. I took cough syrup with it. It’s now 7:13 and I’ve been asleep with a fever tossing and turning the entire time. I vaguely recall my husband coming into the bedroom to tell me he was going to tennis. I couldn’t wake up enough to tell him I was sick and needed help getting situated for the evening.

My best case scenario is I’ll crawl out of bed to the bathroom drug cabinet for NyQuil. I don’t think I can make it downstairs for more water though. I’ll have to drink from the tap. I’m finding myself wondering how much longer Alex will be out. One hour? Two hours? How long is tennis? The shades calendar isn’t on my phone. I’d need my laptop to check and I have no idea where it is as I’ve not unpacked from Montana. My Whoop needs a charge. That’s at the edge of my fever brain. Maybe I can wait till he’s home to address that as well. What’s one night without data right?

I keep trying to access parts of my mind about what I need for a stable night I can sleep through. Do I have it? Can I wait? Will I be able to wake up enough when Alex is home to get the help I need? Can I push through with what I have now. I actually had no idea I could still spike a fever this far into the infection. And I bet when I read this post without the fever high it will make even less sense than it does now.

Categories
Emotional Work Medical

Day 496 and Pardon the Interruption

I’ve been on quite a streak of processing as I’ve written through the emotional rollercoaster of a potential move to Montana. We found a house that seemed absolutely perfect but had to work through our feelings on the matter. We put an offer on the house and as of tonight we are the leading offer and negotiating the legal deal points.

I am however really sick. Alex tested positive for Influenza A last week and while I briefly felt under the weather, I thought my hyperactive immune system had beaten it. Alas the data suggests I very much have the flu and I’ve done my famous “double dip.” This happens to me fairly regularly where it looks like I’ve beaten something abnormally quickly but if I am stressed or not well rested the latent infection doesn’t quite clear and a week later it roars back full force.

Welltory reading showing high stress, los energy and my health at risk
Whoop reading showing a dangerously low blood oxygen count and an elevated respiratory rate this morning

Given my current status I am going to take a bunch of NyQuil and stay in bed and send my apologies to anyone who might need me tonight as I’m clearly a bit addled in the head.

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
Emotional Work

Day 457 and Pedicure

I did something today I haven’t done in two years. I got my nails done. And it felt so luxurious and yet also somehow normal. This regular act of grooming had once been a staple self care activity but today felt transformed into a ritual of joy.

I feel free and lucky in this moment. Getting a pedicure done means I have someplace to be where someone will see me. It means I am healthy enough to be going somewhere. It means I have a desire to be somewhere. All this cascading luck mixed to show me that my life was ok. I felt so much gratitude and self love in that moment. I am ok. The ok-ness of the universe in an act.

I know it sounds heady and existential and also a bit ridiculous as I elevate the act of a pedicure. But truly I feel so good about where I am in life that I can get my toes painted coral.

Also it’d worth noting that less glamorously cutting my toenails is hard for me to do on my own because of my spondylitis. So a necessity and a luxury in its own physical way. It is a quality of life improvement. So I’m grateful that this is where I am. May we all get little joys of normal in this chaotic world.

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
Emotional Work

Day 448 and Disappointment

I’m feeling disappointed in myself. I want to shake the feeling as I’ve done nothing wrong that warrants punishment. But the feeling of disappointment is lingering which is a double cruelty I’m perpetuating on myself.

I have been pushing myself physically. I know this has consequences. And yet I’m frustrated by my body reacting exactly as I know it will when I run myself down. And worse than that, I find myself negotiating with my body to justify pushing just a little bit more. What if I take this medicine? Will that buy me more time? How dangerous will it be if I just keep ignoring how I feel so I can push a little bit more for a little bit longer? I’m rationalizing what amounts to self harm all because I want my body to be something it cannot be.

I feel like I should know better than to be so cruel to myself. I should let it go of the foolish need to push. What I need is sleep and my routine. I should take my medicine and instead of using the feeling of relief it brings to push, I should use the relief to rest in comfort so I heal and recover.

I hate that I keep relearning the same basic lessons of chronic disease over and over again. But hating myself for being disappointing is of course the pattern I need to break. It defeats the point. The self is not an attack surface. Being disappointed serves no purpose in this moment. It’s not driving me to be better. It’s driving me to be worse. So I’m letting it go. And I’m hoping tomorrow I’ll go a little easier on myself.

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.