Categories
Biohacking Chronic Disease

Day 601 and New Limits

The past couple of days have been super intense. Heck, the past month has been a lot. I passed out last night with my phone in my hand a bit after 9pm and woke up well after 8am this morning. My Whoop indicated I had high strain for the past two days and needed more recovery.

Still I went about my usual routines but soon found myself yawning and struggling to keep my eyes open after eating lunch. I felt lucky I hadn’t scheduled much today. I got back into bed figuring I would read a little bit. I kept drifting off. So much for being productive this afternoon.

One of my biggest fears is doing too much. Because I’ve been a workaholic in the past, I have a lingering sense of unease anytime I can tell I’ve been pushing myself for a few days. It used to be that my body would simply crash if I applied too much pressure, but as my health is at about 80% improved from my initial diagnosis I can no longer rely on such direct feedback.

I say that like it’s a bad thing but it’s a huge relief that I can modestly over do things and not immediately find my body crashing into a rest period. But it also means I have to be much more conscious of my own needs for rest and recovery as it’s no longer quite so obvious when I’ve done too much. This represents both a huge achievement for me and also a transitional moment in which I must find new boundaries.

Categories
Aesthetics Travel

Day 600 and High Season

A lot of folks seem to be coming through Montana over the next two weeks. Maybe it’s the nature of high season that people flock to Montana at the end of the summer?

But it’s been quite fun to have all kinds of friends, mutuals and acquaintances reach out to make plans. Visibility on Twitter has played a large role in this, as anyone passing through Montana might be inclined to grab a meal or a drink if they scroll their local mutuals. I like to think I am top of mind because I am a good hang but it’s probably because I’m just quite visible.

All these tourists has got a bit of a “center of the universe” feel to it. It’s like a mountain summer town version of Manhattan during fashion week. Or Los Angeles during the Oscars. I’ve got to say it feels like I’m Monaco and it’s F1 racing season. Every city of note has an event that brings all of the jet set to their hometown.

I’m usually mixed on doing too much social activity but I’ve been feeling like socializing more. I’ve even been eating out with much more frequency. And what’s amazing about it is that in the past I didn’t want to do more than a couple events a month. But this end of summer in Montana thing has me looking forward to more deck cocktails, eating cold cherries on the marble kitchen slab, going to pubs and ale houses, and maybe even a few steak houses too.

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Chronic Disease

Day 591 and Normal Sunday

Having a modest disability like chronic pain (I have a form of arthritis in my spine) means I can’t always be physically active for an entire day. I need to lay down flat sometimes to relieve pressure on my spine and I can be fatigued from the persistent pain. It’s something I have to work around even if it’s not completely debilitating.

I’ve worked hard to control the disease. But it has meant a lot of days where normal activity had a poor return on the energy invested. If had a day where I was on my feet for hours at a time I’d probably pay for it the next day with extra time laying down. So I try to limit unnecessary activities.

I’m giving a lot of context that might not be necessary for regular readers of this daily chronicle that know me. But it’s not always easy for me to do what normal people take for granted. Imagine a day where you wake up, shower, cook and clean up after yourself, you go to work, you run some errands, you exercise, you come home to cook and clean some more, you care for your family and maybe you enjoy a hobby. A regular day.

I named ten activities you do without thinking. If I want to avoid hurting myself or using too much energy in one day, I have to pick two or three of those things. You might not be surprised to learn I pick showering, work and my health routines.

If I’m having a good day, I can add on additional activity or two. But it’s probably something I can do laying flat on my back. That’s how Twitter became a central nexus for socializing if you are curious.

So having given paragraphs of context I hope it allows you to understand my excitement about having an absolutely normal Sunday. This morning got up. I made food for myself. I went for a forty minute walk. I did my entire biohacking routine. I went to a nursery to see about some options for the orchard. Then I went to the grocery store with my husband and we did the shopping for the week. Then we did some chores on the new homestead. A truly astonishing about of activities for someone like me.

And even after all activity that I felt well enough for a long shower (often a painful activity as hot water swells my joints). It’s 5pm and I’ve been up and about since 8am and only laid down just now to write this post. And someone I feel totally fine.

Shortly I’ll be cooking mushroom risotto for Sunday dinner. My husband is the cook of the family but for some reason Arborio rice is his nemesis. He’s never made a decent risotto in all the time I’ve known him. Typically after a day with this much activity I’d never even consider cooking. But I’m having a normal Sunday and doesn’t it sound nice to make something a little more involved to eat?

Categories
Biohacking

Day 580 and Feeling Normal

I had quite a case of insomnia last night. Eventually around 1am I caved and took a sleeping pill. I am so glad I did as I slept straight through till noon today. And I woke up feeling, dare I say it, almost normal. I felt better than normal. I actually felt good. Clearly I needed a long, comfortable, and uninterrupted night of sleep.

My Whoop has logged a lot of sleep disturbances since we arrived in Montana which has dragged down my recovery score. It always takes a few nights before I acclimate to a place’s natural sounds. The creaky stairs or the shifting of a building becomes something your unconscious mind recognizes over time. I think I’m finally starting to adjust and feel safe in our new house.

I’d been struggling to keep my routines and rhythms through the moving and unpacking. I had horrible digestive struggles from the excess amounts of processed we ate on the road. Then I found myself overheated and itchy as a heatwave smacked into a lack of air conditioning with a side of dusty boxes. I was physically a bit of a wreck.

Naturally I am relieved to feel like my body is adjusting positively. One of the many reasons we were excited to move to Montana is the cooler weather and ample space to be outdoors. My body is in less pain when I keep it cool and active. The optimism that wilted under the heatwave is now back.

Categories
Chronic Disease Community

Day 571 and Isolation

The move to Montana is mere days away. Alex has started to feel a sense of loss. He’s been able to build a nice community here in Boulder in just two years thanks to his deeply weird (joking) habit of having hobbies. I on the other hand, have never felt more isolated from my hometown. I cannot wait to leave.

Some of this feeling of alienation is simply transient. It is my natural dislike of summer coming to a head because of the physical toll extreme heat takes on my spinal inflammation. I can’t be outside much during these new extended heatwaves, which defeats the purpose of living in Colorado almost entirely. Who wants to live somewhere you can’t go outside for 3-4 months of the year. Let it snow!

But some of it is that I can’t have physical hobbies that are too energetically expensive like like Alex enjoys. I spend my summer weekends alone in bed reading and shitposting, while Alex has a fairly vibrant in person social life year round. My lower key physical hobbies like gardening also aren’t particularly social even though they could be if folks wanted to join me.

Part of the issue is that we have a rented townhouse n Boulder that is too small to allow for any socializing. You can’t really come visit us. There is no open space for welcoming friends, neighbors or family members. While people have come to visit us in Colorado, virtually none of them have set foot inside the house. Some of that was Covid but it was mostly not having any space for anyone to sit and relax for extended periods. And because we knew it was transient we never bothered to fix it.

And when you can’t guarantee your physical health, it mostly looked like people coming to visit Alex and me staying home. I couldn’t afford to use my energy budget outside the home a lot during Covid. I assume folks think I hate them, when in reality I just can’t guarantee I’ll be well enough to be out and about for three hours.

It’s much easier for me to commit to socializing if I am home in a safe place where I can lay down or access my medications. I’d like to play host as it’s just easier to accommodate my own limitations. It feels selfish but I think most people wouldn’t mind working around a minor disability like spinal pain.

I hope that people will take this as an open invitation to come visit us in Montana. We will be investing heavily in our guest rooms and eventually a full guest house in the barn. We want people to come up to take advantage of our access to a more remote and laid back form of living. You can go shoot with Alex or you can kick back on the porch and stare at the mountains with me. It’s up to you. But we’d both love to see you.

Categories
Biohacking Chronic Disease

Day 564 and Not Exercising

Summer is supposed to be when you are outside and most active. But that’s not been true for me. I’m not entirely when I stopped working out this summer, but I suspect it was sometime this May when I got the flu. When I was in Montana I caught influenza A from my husband while we were buying our new homestead.

I was pretty under the weather for the entire month. I probably extended my suffering by being in a high stress situation for several week. I had to do things like attend a two hour property inspection while I was definitely still sick. And then a few days later I was stuck in a car for 8 hours straight back to Colorado. Thankfully my husband actually did the driving. Negotiating the emotions of buying our first house while sick wasn’t ideal either. That was arguably the most intensive part of the entire experience.

Going into May I was hiking and walking an hour a day along with several consistent months of a 3 day a week weight lifting split routine. My squats looked good and my tracker apps were pleased with my low level ambient activity. I was still struggling with fatigue but I felt like being active was surely the best way of improving my energy levels.

I’m not as convinced this is true anymore. There has been chatter for decades about post exertional malaise in various viral and autoimmune cases. It is regularly brought up now in long Covid as well. I’ve experienced some variant on and off for years whenever I have symptom flares. Even modest exertion like a short walk can lay me flat if I’m not feeling well.

As I had a lot of ups and downs in my symptoms in June in July I let even modest exercise efforts go entirely. Between traveling to hot climates like Texas and the Mediterranean I wasn’t exactly eager to be outside either. Heat is my nemesis. I’m probably one of the few people who can go spend time seaside and struggle to be outside unless I’m literally in the water. There is a reason I am so eager to move to Montana.

Looking at my various trackers and diaries the past three years I have seen aggressive declines in my physical activity levels over the summer. As heat domes and 100 degree days become the norm I just can’t tolerate a lot of time outside. The temperature barely dips below 80 even at nighttime. And if I try to be active in that kind of heat I see set backs in all my metrics.

I’ve got years of data at this point and it’s funny that I’m always at my fittest and most active in the dead of winter. Everyone else enjoys sweater weather and Christmas indulgence while I am lifting heavy, energetically watching my nutrition and reveling in the cold. Maybe you can take the Swede out of Scandinavia but you can’t take the Scandinavian out of the Swede.

Categories
Travel

Day 554 and Creature Comforts

You’d be surprised at what you can tolerate so long as you’ve got the little luxuries in life. I think I stole that quote from a Vin Diesel movie Pitch Black. And I’ve found it to be quite accurate. Travel is the sort of experience where misery can be overcome by a decent pillow and room service.

I am emerging from some time on the Ionian Sea that happens to be on the wrong side of some of modernity. And let me tell you my appreciation for capitalism has been rekindled a thousand fold.

I did a layover in Heathrow overnight and I’ve simply never been more relieved to be in a decent business hotel. I must have looked a wreck as I got upgraded into a king suite with a soaking tub. And I just say I feel much more human after an hour in the bathtub, a night of sleep with multiple decent pillows and room service.

A good long soak and a full English breakfast has done much to improve my overall spirits. And my general condition of itchiness has gone by the wayside. The blue bags under my eyes are merely visible as opposed to horrifying.

I’ve got another leg of the journey ahead of me but I’ll be in business class and that’s a luxury of the sort that I very much crave at the moment. A flat lay, endless hydration and a bunch of saved Netflix shows is a creature comfort of the highest order. If the empire is going to decay I’ve got to savor every last moment of little luxuries before they are gone.

Categories
Chronic Disease Emotional Work

Day 550 and Boundaries

I don’t maintain boundaries well. I am embarrassed by my needs. Ashamed even. I’m afraid if I maintain the boundaries I actually need I’ll doom myself to a life of loneliness. No one is going to go out of their way to hang out with someone who can’t do fun shit right?

And so I let my own needs slip. I agree to do things. I tell people sure I’ll meet up. I’ll agree to go to a meal together. I pretend to be excited about going somewhere. I yield to the expectations of a normal life. And then I hold myself together as long as I can. I’ll get some enjoyment out of my time with loved once. But after a few days if I don’t get rest and recovery I will be in a rough spot.

It always ends in a crash. When I know I could simply draw firmer boundaries and take time before it becomes a crisis. My loved ones are confused by how I continue this cycle. Why didn’t you say something? Why did I agree. And I honestly don’t know sometimes. Because I’d never agree to do anything ever if I had my way.

And I’ll admit I’m afraid that if I never do anything eventually I’ll be forgotten. That no one will go out of their way to be with me. I can tell myself that this isn’t logical. That this is just the scared inner child who experienced being left alone when she was small. That reality doesn’t reflect reality any more. But I’m not so sure. Maybe my nearest and dearest will still come out for me. But I do think we live in a harsh world where we mostly don’t care if others disappear into their homes forever.

Categories
Aesthetics Travel

Day 548 and Shame

I’ve got a pit in my stomach. My throat has the constricted feeling of embarrassment that gets trapped in your gullet. I failed and lost money on something stupid. I tried to do a pleasant vacation sort of choice over a long weekend. A “nearby” Riviera town was supposedly within driving distance. I thought what could go wrong. Let’s go to the Ionian Sea! I briefly thought I could enjoy something like a regular person.

I said yes as everyone was so excited by the fresh air and the beaches. It will be healthy and fun! I was worried it would be without the basics I need to keep standing upright but I wanted to try anyway. Consistent air conditioning is really important to keeping the rest of my bodily system’s functioning. It’s a very Marie Antoinette need, but once my spine swells it can go very wrong very fast. Summers are hard for me.

My system begins to cascade within a pretty short window. About half a day. Eight hours without being able to lay flat for a break ended up fucking me up badly in this case. The “oh it’s close, just a three hour drive” ended up being a ten hour ordeal over badly maintained roads. I was sick to my stomach and in pain as we took hairpin turns and popped over potholes. I was in so much pain it was over a 10. It was “lose consciousness” levels of pain as my body knew I shouldn’t be awake for it. I was afraid it would get so bad I’d need a hospital. Instead I settled for opioids. Keeping out of the hospital was probably wise.

I hate needing those kind of drugs. The “your pain is a 10” drugs push me off the plane of reality by a few ecliptic degrees, and suddenly I can tolerate the pain and discomfort again. I understand how addicts get made now. It’s not real comfort. It’s synthetic but most people can’t tell just by watching. The fake relief looks real.

I’ve never felt tempted to take pain medicine recreationally. It’s usually only when a pain is too big for my reality that I tap out in defeat and take an opioid. It’s when reality crushes my soul as one variable starts to degrade the whole machine. I only use it to stave off collapse. And I was very close to collapse.

What is fucked up is that people like me off the axis of reality. The hazy hyper vibe’d unreal “reality” of encroaching nihilism is bop. Dystopia seems cool and consumable.

But it’s not an adventure for me. Living when sick is a daily dance with the devil who could use any chance encounter to end it all for you. The kind thing might be to stop fighting. But I rarely give up so I must enjoy the sticky Sisyphean crawl towards towards reality and the search for my own dignity.

I’m ashamed because I couldn’t make good decisions in that kind of pain. When the first hotel turned out to be a scam I happily laid down a card to stay till Monday at another hotel. Anything to get me relief. I just needed a safe cold place to heal.

It was a bad decision. The air conditioner didn’t work. I couldn’t get comfortable. I was sleeping in a dark sort of cold room as I couldn’t work up energy to go to the beach or even see the rest of the hotel. Not that it mattered as none of it was air conditioned anyway. I decided to go home after I had built up energy reserves back from sleeping for hours. I couldn’t tell you how long I passed out for but it might have been close to a whole day.

Alas I was again scammed for my efforts. The hotel clerk says no you paid for four days so you cannot get a refund even if you leave early. No refunds ever. No early checkout. No one cares if you are sick. Fuck her but I said hotel California for me. I was sick and needed safety.

I made some efforts to get receipts and documentation. I asked a receipt attesting that they wouldn’t let you cancel for any circumstance and that I was sick but it made no difference. Maybe I can take to the credit card or even the health insurance to show that I crashed. I’ll work it out on the backend.

I often wonder why I need special care. Surely I can try to do regular things like drive to the beach. But I couldn’t. I lost 48 hours to driving and bad air conditioning and pain. I didn’t have the health to stay at the beach. I needed to go back to the city with air conditioning.

I felt so stupid. I tried to fight to hold space that maybe I was a person that could do a vacation. That I was normal. And it was firmly corrected by reality. And then you think this is why I don’t go on vacation. The additional friction makes it a hell. It’s not a joy it’s a visit to hell.

I cut bait quickly this time.I’m ashamed at now much I must firmly maintain the no. No I don’t want to go to the beach. No I don’t have the energy got a full day road-trip. And definitely no on an empty stomach.

I feel like I’m not fun. That being friends with me is joyless because I can’t agree to fun things like a weekend at a beach. I find myself in tears having failed again at trying to do a nice normal fun thing. I ruined the weekend for myself and everyone around me.

Fun with me is being in a dark room. We watch television. Or maybe a movie. We make fun of a plot hole or bad casting. We sleep a lot. If we are at my home we do the chores. We keep up with the farm. There is no reason to turn consumption of recreation into a thing. It just hurts me. No cheap facsimile of an American vacation in a resort in a cheaper country.

That hideous example of colonial expectations of western domestic standards turn out to be required for a disabled woman. Air conditioning and short trips keep me alive. And at quite a cost. Since no one will refund me any of these damned scam hotels. I should have known better. It will probably take me a week or so to recover. And I’m so ashamed.

Categories
Aesthetics Travel

Day 547 and Cruel Summer

The cruel summer is the season after silent spring. It’s hot out. Unnaturally and unseasonably so.

And people aren’t really prepared for it. Whole countries haven’t invested in air conditioning yet. I made the mistake of being outside during high noon. I was under shade and there were fans but I let my insides get simmered a bit while I ate lunch.

The exhaustion that overcame me was enough for ten siestas. A dozen forced naps would easily overcome even the most fervent consciousness. I’d simple done too much by existing and eating at the height of the day. What a foolish hubristic nature this mortal has.

What little defense the air conditioner has against the full force of noon will have to be enough. Sleep will find me if I can find an even small restorative space. One I know will disappear the second the key card is lifted from the auto electricity system.