Category: Chronic Disease

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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.

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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.

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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.

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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
Biohacking Chronic Disease

Day 463 and Caretaking

My husband has a a weak immune system. He used to get colds once a month or whenever he would travel. I, on the other hand, have a wildly overactive immune system. I never get colds.

His immune system doesn’t fight shit off well, whereas mine seemingly never ever stops reacting. I have an auto-immune disorder which is marginally worse than getting colds so on balance Alex does more caretaking of me than I do of him. But it wasn’t always that way.

I used to take care of his regular colds when we first got together. When he married me and we lived together, he slowly absorbed my overly active immune system, eventually cutting down on his colds to a couple times a year. And yes this is weirdly a thing that happens. Your partner affects your gut biome. My health sadly got kinda worse over the course of our relationship. I doubt Alex’s shitty immune response made my life any worse (if anything I would be thrilled for mine to chill out and I take drugs to subdue it) but arguably him getting my overly active immune system has done wonders for him.

I stopped being a caretaker for him. He became a caretaker for me. It was an interesting transition I didn’t really clock at the time. Alex was used to constantly being sick for years but through exposure to me he kinda forgot how much it sucks. This was further exacerbated when the pandemic hit and we stopped being exposed basically any infections.

Alex went two years without a cold. It was miraculous! Alex really enjoys his identity as a health person. Hell he thrived as an active Colorado outdoorsman in a way he never did as an indoor New Yorker. But travel and life is rebooting and it would seem Alex’s old weak immune system is so out of practice it doesn’t do well with crowds and travel and public appearances. We’ve been in Miami less than a week and he’s sick as a dog. Thankfully it’s not Covid. But guess who got to remember what it was like to be a caretaker again? Yeah, I’m responsible for Theraflu and nose spray. I didn’t do any of the conference I’d planned for the day and had to cancel on a bunch of plans but honestly it’s not so bad. Caretaking is an act of love after all.

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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.

Categories
Chronic Disease Travel

Day 440 and Twitchy

Last night I had a poor night of sleep. My body was just all kinds of weird. A muscle spasm thing kept me awake. I tried magnesium (it’s a natural muscle relaxant), several rounds of Theragun routines, a few stretches, and finally actual muscle relaxers.

Nothing stopped the weird twitching. It was 2am in Germany so I was resigned to a bad night of sleep. I just laid in bed waking myself up every couple of minutes. It was exhausting.

Eventually I got to sleep and seemed to wake up in the morning no worse for wear. I wasn’t especially alarmed, as my body has a tendency to just go off on weird physical tangents for no reason. Whatever the fuck happened it seemed to have passed so I went about my work day.

I broke for dinner around 6pm or so. I ordered Ethiopian and chowed down hard. I was feeling full and sleepy and I figured I’d lay down to digest a bit. I put on some television and was promptly out like a light. I woke up two and an hours half later and realized it was probably time for me to call it a day.

I swear the only thing that woke me up was the knowledge that I had to write my blog post for the day. I’m mostly kidding. The heater turned on and roasted the room so I needed to open the window. But now I’m absolutely going back to sleep now.

Categories
Chronic Disease Medical Travel

Day 437 and A Mood

I’ve been struggling with allergies ever since I arrived in Frankfurt last week. The stress of travel and the constant itching affect my mood more than I’d like.

It’s a weird situation if I’m honest as I’m so happy to be traveling and on my own after two years or being in the same place and with the same person. I love my husband and I love my home but I’m sure everyone can relate at the end of the pandemic for the need to be alone.

My mood has largely been buoyant except for the constant low level misery that is these damn allergies. My eyes water. The skin around them is red and raw. My skin keeps finding new intermittent patterns to express hives and eczema. And I’ve built up quite a tolerance to Benadryl.

The allergies stress me out and then my spinal pain worsens and then suddenly I’ll find myself in just a miserable sad mood. I’m grateful I can write it all down so I can get the mood out. I just want to be comfortable in my own skin and smiling again.

Categories
Chronic Disease

Day 384 and Power Save Mode

I was convinced today was Thursday. I sent an email to my doctor confirming the appointment I was sure I had. She sent back a confused but it’s Wednesday response. That’s how I knew I went into power save mode.

I do my best to carefully cultivate reserves of energy. I used to have an attitude of “don’t save any for the swim back” as now I know I need to balance expenditure and recovery. I’ve been stopping when my battery is partially drained. So I wasn’t entirely sure I had over done as it’s been a while since I overshot my energy. That’s progress for me.

Yesterday I missed the signs for a migraine coming on. I was focused on something else and found myself surprised when I was vomiting and needed the lights off. Today I was so drained I went to lay down for a minute and found myself taking a three hour nap. Even though I had a good night of sleep. I wasn’t in a sleep deficient.

I was just in power save mode. I’d gone below the reserves I’ve have so carefully cultivated for the last year. Knowing that I’ll keep working on my reserves. I’ve got big plans coming up and I need to be operating on full capacity. So that means respecting I need to recharge now.

Categories
Chronic Disease Preparedness

Day 373 and Picking Up Signals

I missed a signal from my body today. I promised myself I’d rest this weekend as I was feeling the exertion from the week. Which is exciting and great that life is having good energy but you’ve got to make sure to restore and preserve.

But this morning I learned that the Costco that burned in the Marshall Fire was reopening. We’d briefly thought we’d lost it during the chaos of the fires. But somehow they had managed to get it cleaned up and opened within a week. I was running low on groceries because of our own Omicron cases and the after math of the fires kept us at home. I immediately felt like we needed to go to the Costco. Emotionally I needed the Costco run. We needed groceries but I needed to see that it was still standing. That it survived.

Physically it was a mistake. Driving past the new burn scars was surreal. Seeing the remains of Old Town Superior as nothing but rubble was upsetting. But it wasn’t nearly as upsetting as turning into a giant box store parking lot and doing chores in the aftermath of a fire. Like nothing had ever happened.

We bought a bunch of shit in completely apocalyptic settings. Traffic lights were still off but a bunch of chain stores has big signs that said “we are open!” The Costco was running heaters on generators. The HVAC system has smoke damage so it couldn’t be run. But it’s freezing and we just had two large snowstorms so they needed to do something to warm up the warehouse. Life goes on.

I was relieved our Costco was still there. Glad for my bulk raspberries and chai as much as the security of seeing something made it. But fuck did I feel terrible afterwards. My entire body hurt. I’m not sure if it was emotional or physical but I was hurting. I still am hurting. I could barely write this down. I wasn’t listening to my own signals. That maybe I needed rest. That maybe I shouldn’t have gone to Costco. We’ve got to be gentle as we navigate the chaos of our current moment. You never know when you will find a trigger point.