Category: Chronic Disease

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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.

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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.

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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.

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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.

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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.

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Chronic Disease Uncategorized

Day 372 and Pace Yourself

I was in an incredible groove yesterday. I’ve been letting go of the awful December I experienced and enjoying the new January energy. If you look at yesterday’s post I was absolutely in the zone. So I pushed myself thinking I can handle full capacity day. Mistakes were made in my enthusiasm. And well I’m probably in need of a rest. I over did it.

I often struggle with pacing and moderation. It’s important for me to remember that I’ve got a history as a workaholic. But I don’t want to feel as if I can’t push myself either. It’s the middle path I must walk. But it is hard to stay on it. I feel like every day I am sliding off the middle path right into the ditch. I’m getting better at getting myself back.

I used to be happy mailing elaborate detours. I’d take every exit on this metaphorical path in the past. But tonight I’m going to remind myself I’ve got a destination. And that is being responsible for keeping myself happy and healthy. So I’m going to get in bed and watch some TV and shitpost on Twitter

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Chronic Disease Medical

Day 352 and How To Be Sick

Everyone I know seems to be sick right now. My husband is sick. My media friends are sick. My finance friends are sick. My random internet friends are sick. No one is in bad shape but everyone is miserable. If Omicron is as transmissible as it seems you’ve got a good shot at getting sick in the next month or two even if you are fully vaccinated. Don’t panic. I’ve a ton of experience being sick so let me give you some advice on how to get through the misery in one piece. Being sick is an opportunity. You’ve got this.

Drink lots of water: basic but crucial. Down a full glass of water every few hours. Set a timer. Being hydrated is key to your body flushing out gnarly stuff.

Stay in bed: your body has diverted all your energy to your immune system to fight off invaders. You are going to be tired. Don’t try to overcome it with stimulants like coffee. That’s just going to make it worse. Accept that you won’t be as focused or as energetic. The less you try to push through it the faster you get better. Cancel everything. If you want to get back to normal the fastest path to that is letting yourself heal.

Intake lots of nutrients: your body needs all the help it can get. Now is not the time to restrict calories. Eat vegetables and high quality protein. Eat healthy fats. Take a multivitamin. Consider taking Vitamin C and Zinc. Drink broth as it keeps you hydrated and gives you nutrients. Here are some ideas from the Cleveland Clinic.

Take care of yourself: tempting as it may be to order junk food, binge watch tv and doom scroll social media, you need to build up your vitality and constitution. This is what had worked for me. Being in bed tightens up your muscles so do a basic stretching routine for ten minutes twice a day. Don’t overstimulate your autonomic nervous system. Go out in the sun and keep your circadian rhythm normal. Meditate even if it’s only a few minutes. Do deep breathing. Take a hot shower even if you can’t stand up for too long. Brush your teeth and your hair. Talk to to your family and let them know how love them. If you have the strength do something artistic or creative. You must maintain your humanity. That means finding rhythms that build you up.

Accept Help: being sick robs you of many of the building blocks of modern identity. If you have built your self acceptance on concepts like hard work and being productive, it’s going to make you feel shitty when you are in bed and can’t do anything. Being sick is a reminder that self acceptance is the key to happiness. You are more than what you do or produce. You are a human being worthy of love simply because you exist. At your weakest and your sickest you are as worthy as at your best. Be ready to accept help from others so you can accept yourself. Be ready to be cared for by others. You do not owe anyone anything. Your existence is enough.

Chances are you are used to feeling healthy. Being sick is going to rock your reality. But you will overcome it. Cultivating empathy for yourself is the best path for doing so. Don’t judge yourself. Care for yourself as if you were your own child. Without judgement. Good luck!

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Biohacking Chronic Disease Medical

Day 343 and You Don’t Have to Feel This Way

Modernity is tough on our bodies. We sit hunched over glowing screens for hours and we call that necessary. We rationalize ignoring our meat sacks as logical. Cartesian logic like “I think therefor I am” is a convenient an excuse for disembodied living. Except eventually it will catch up to you. Maybe not for a while but it will. Maybe you’ve noticed feeling shittier recently.

I’ll tell you how it starts. You feel sluggish. So you stimulate your system. Maybe you drink more coffee and eat more sugar. Then you notice you don’t sleep as well. That makes you even more tired. So you stop moving as much as you did before. You don’t track any of this so it’s hard to notice till the effects compound. Then you notice aches and pains and you think well maybe it is just getting older. Maybe you start to have a back problem and friends tell you they have the same problem.

It’s the slow downward spiral of misery and it’s probably happening to you. It happened to me fast and hard but the path is the same. We accept feeling badly. We accept that deterioration is a fact of life because we’ve got to work and take care of the kids (if you are lucky enough to afford a family). We just accept lower standards of living because we get worn down.

It just doesn’t have to be like that. This shitty quality of life doesn’t have to be the new normal. Fuck the doctors who can’t diagnose you. It’s systemic. You’d be lucky to find one things so broken because it’s a place to start. Most people are justly subtly broken. But it’s not reached the acute stage where our medical system finally kicks in. Doesn’t mean what you feel isn’t real.

The shitty part is next. You’ve got to do the work. You’ve got to change your life. No doctor or health practitioner is coming to save you. They an give you a piece of the puzzle but you’ve got to assemble it. If you commit to getting well it’s going to cost you willpower. Because the path out is hard work. It’s nutrition, sleep, lifting heavy things, going outside everyday, taking supplements and vitamins, meditation and mindfulness. Frankly it’s a lot. I spend a third of my day on it so I can live what’s left well. But I no longer feel subtly shitty all the damn time.

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Chronic Disease Emotional Work

Day 330 and Vitamin Not Pill

I was reading a fellow investor’s thesis page and noticed one lens they use for investing is whether a product is a “vitamin or a pill” with the insinuation that pills are inherently better investments than vitamins, as one is a nice to have for a business and the other is a must have. Now I can’t speak to this as an investment thesis, though I largely agree, but I do disagree on a wellness basis.

Preventative medicine is just as necessary as interventional medicine. In some cases more so, as getting ahead of a disease’s inflection point should be the humane way we handle our medical needs. We are just often too focused on short term impacts to see the value of solutions that build over time. Think of it as the quarterly reports of healthcare. Why build for the future when the market judges by each 10K?

The nature of panic may make us inclined to spend heavily on something that has become acute. But that does not make it inherently more effective or worthwhile. It’s just the immediately necessary. It just means we need higher minimum effective doses to see a result.

What we often ignore is compounding effects of wellness interventions are far superior to the mitigation of a pharmaceutical over time. Most of us would prefer to not require the costly (both biologically and financially) medicines that keep us together. This is not to say that I am not deeply grateful for all the drugs I take. But rather that I have seen incredible value in what we deem “lifestyle interventions” and other “nice to have” vitamin style supplements and protocols.

And while it takes much longer to see their effects, the compounding positive effects often wildly outperform anything that might be dubbed a pill. The trouble probably boils down to switching costs and time to pay off. Which is why an investor would prefer a pill to a vitamin. But just because something has a longer lifecycle doesn’t make it inherently less sticky. Or less effective. Or crucially any less profitable. The only way we ever see the deeply positive effects of habitual practice and dedication is to do the work. That work is boring, repetitive and low payoff. Until, most times years in the making, you see how putting your future self over your present self is what is giving you the future you always dreamed would be yours.

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Biohacking Chronic Disease

Day 322 and 10x

One of my favorite hobbies used to be powerlifting. When I had to take time off to control my ankylosing spondylitis (it’s an inflammatory spinal condition) I was simply in too much pain to walk around the block let alone squat 250lbs. But as we’ve controlled my symptoms so efficiently I’ve been able to pick back up weightlifting this fall. I’m overjoyed as this represents full recovery to me.

I’ve been slowing introducing weight using the core barbel lifts using the Starting Strength method. It’s been a blast as I get to have beginner gains all over again after being sedentary. The biggest change in how I train compared to my time before managing a rheumatoid condition is timing my training around my recovery. I used Whoop and Welltory who both measure my HRV or or heart rate variability. It’s basically a measure of how well your autonomic nervous system is coping with stress and turns out to the best predictor of how well I will feel on any given day.

A recovery chart of my HRV with red marking the days I lifted.

I’ve noticed that lifting hits my HRV hard. And it takes time to get it back to a normal place. Sometimes several days. I absolutely cannot not push my recovery frame without making my HRV dip even worse. It’s fascinating to see how well correlated the two appear to be.

On days when my HRV dips my resting heart rate is noticeably worse and using an app like Welltory I can see much more stress I’m under and how damn active my sympathetic nervous system is at work. The stress of recovery is significant. And my symptoms will tend to flare. Pain and fatigue are noticeably worse.

Despite the evidence I have found it mentally challenging for me to trust this stress and recovery process. On bad days when my HRV dips I forget how well I felt on the good days which leads me to some emotional flailing. Instead of trusting the routine I’ll panic at how shitty I feel. I’ve got amnesia about how terrific & productive I can be.

I’ve got to learn to trust the numbers. Otherwise I’ll do stupid shit like push to get something done on a bad day. That activity will take hours of hemming and hawing and willpower and brute force. If I had just waited for a good day to get my shit done chances are the task will take me 5 minutes.

Forcing myself to abide by the recommendations of Whoop and Welltory gets me out of the cycle of flailing. Listening to the data can override my amnesia. If a bad HRV day happens I just don’t try to do ANYTHING. Because I know on a good HRV day I’ll be 1000x more productive. It’s a discipline I need.

Everyone has different capacity. Forcing yourself into the “industrially necessary” routine of a 9-5pm weekday only makes sense if you are in a bigger corporate system and must be reliable even if you are not performing at your best.

Freeing myself from the mentality of being available on a bourgeois schedule is challenging. I hate feeling like I disappoint people by not always being “on” and productive. I feel like availability & reliability matter more than outcome (which is occasionally true but not generally true). The reality is you can have 10x Julie or you can have consistent Julie. I’d pick 10x personally.