Tag: Stress

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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.

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Medical

Day 568 and Upset Applecart

I’ve been in a bit of a mad dash to get in last doctor visits with people on my treatment team that are in Colorado. Bozeman being a much smaller city than Boulder or Denver isn’t rich in specialists.

Of course, a hammer sees a nail. So on my last visit to my primary supervising physician in Denver, he just has to prescribe some new shit. He’s a bit anxious about doing some things remotely so we jumped into a new treatment I’ll start in September and a course of antibiotics I started on last night for an infection.

I’m basically stable but I had some symptom flares recently with all of the travel and heat. So getting put on a new antibiotic to sooth my immune system, which is both reactive as fuck and suppressed by biologics seemed sensible. I had some infections that weren’t clearing because of the suppression and there is no sense treating deeper stuff with that going on.

But alas last night at around 1am I realized we may have upset the apple cart a bit with the antibiotic. Only modestly so, and perhaps worth it if the clean up gets rid of any bad apples spoiling the whole bunch. I can feel certain symptoms improving even as I am indignant about the side effects from the medication.

But I’ll be damned if this antibiotic doesn’t have some side effects I dislike. It makes me both woozy and a bit amped up. Which is a shitty feeling. It was clearly a bad idea to take at night but my doctor wanted me to have my first dose as soon as possible. I was absolutely Tweeting late into the night being the central nervous system effects.

It often feels as if there is always something new and stupid wrecking my body in the summers. And there is little choice but to upset the damn apple cart to deal with it. I know it is necessary and I’m lucky to have the help. But I think I’m entitled to dislike it just a little bit.

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Internet Culture

Day 566 and Thot Leadership

I’m only a week out from moving to the homestead in Montana. So naturally I’m having a lot of feelings that I’m coping with by being unproductive on the internet. I’ve been enjoying falling down various rabbit holes like the rise of femcels whilst torturing reply guys on Twitter with bait polling.

But through this particular exercise in self indulgence, I’ve wandered off my usual path of vaguely right coded back-to-the-land regional capitalism and stumbled into the extended universe of socialist criticism of neoliberalism feminism. Socialists spend a lot of time being pissed at capitalist visions of feminism. And it’s really good stuff.

The discourse on resistance to neoliberal feminism is fascinating and the narrative space is so rich. We’ve got the failures of female friendship because of productivity concerns. We’ve got tradwives and reactionary refusals to work outside the home. We’ve got elaborate aesthetic deconstructions of Mormon homesteading. Ann Helen Peterson is an entire Substack beat. Meg Conley has some of the best writing on consumption and home life ever written.

It’s enough to make me wish I’d stayed in academia and pursued blue check thot-leadership. How fun is it to complain about being burnt out and misused but in fancy language? Ok it’s probably not as fun as I imagine since they are mostly untangling lifestyles I actually live.

But like what if instead of being a Girlboss who became a Tradwife homesteader I did academic research on myself instead? Write what you know amirite?

It’s clearly uncomfortable being in an in-between space and I simply cannot move to Montana fast enough. I’m scattered and annoying and in hardcore goblin mode and I’ve got no other excuse but I’m scared. You can really spot it in the erratic shitposting and bitching. But I think everyone is having fun so I guess it’s alright.

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.

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Chronic Disease Emotional Work

Day 560 and Unstuck

Yesterday was a particularly challenging day for me physically. I described how I was becoming stuck simply because the pain to change positions, even if I was uncomfortable sitting up, was such an obstacle.

I’m just stuck in the pain until an even worse pain develops. That’s probably a good metaphor for life. We will stay in an uncomfortable position until it’s so intolerable we simply must change.

Waxing philosophic about pain is clearly an ongoing theme of this daily writing exercise. I’ve got 108 mentions of the topic so yeah that’s chill. Considering it’s a daily accompaniment I’m relieved it’s not a larger number. Most days I am clearly able to become unstuck from the pain enough that other topics occupy my mind.

I am however not feeling great about how unstuck I feel in life this week. Perhaps it’s the combination of a symptom flare with the final countdown to the big move to Montana. It’s all waiting and anticipation and frantic preparations combined with physical struggle and fatigue. It does not make make for an environment where I feel I am best moving my life forward.

I am someone who very much relies on and feels embolden by willpower. The feeling that I can simply apply my intention to something and through that focus bring it into fruition is a super power. The American dream has been littered with manifesting energy. The Secret literally is our religion.

So I hope that, as I sit in this last waiting period before I confront massive change, I am able to let myself be. To not be obsessed with being stuck or unstuck. But just be in the moment I am in without judgement.

Categories
Emotional Work

Day 557 and Fixation

I’ve got a gift for generating momentum. If I can summon the energy and the willpower, I’ll put my total focus on unlocking whatever blocking issues hinder my goal.

The trouble is that this process doesn’t allow for multitasking. Once I turn my eye on a blocker, I’ll fixate on it until it is solved. I’m incredibly prone to tunnel vision.

I’m usually quite competent at prioritizing and ordering priorities correctly to take advantage of the is tendency toward focus. But sometimes I’ll get fixated on the wrong thing and I’ll stay stuck on a problem that shouldn’t be my first priority.

And it’s really hard for me to pull away from a problem if it’s an emotionally charged issue. Those typically involve my personal life. Problems with my friends, my family and my husband can easily hold my energy hostage. Even if it’s not a top priority, if it feels emotionally like it should be a top priority I’ll struggle to let it go.

Over the spring, one of my fixations was finding a stable living situation. In May when Alex and I went scouting for our second time in Montana I poured all my willpower and focus into removing blockers to purchasing a home. It was a grinding emotional process as where to live and when to make a major investment are hard questions.

Now that I’m less than a month out from the move, I can feel my focus shifting. The creative generative driving energy that secured us a homestead is now searching for its next home. It makes me shiver a little bit. Like I’ve got my own personal Eye of Sauron probing my reality for it’s next target. I know what it should be. But sometimes my focus isn’t well behaved.

Categories
Chronic Disease

Day 556 and Histamines

I am so itchy my entire body is covered in yellow and purple bruises from my attempts to generate some form of relief. I set out title tag this post with “itchy” but apparently I did that three days ago.

That makes me feel super fucked as I honestly don’t even remember writing it. It’s been a blur of Benadryl and travel and shitty sleep and absolutely no recovery. And I am desperately thirsty because I keep taking drugs that dry you out. It’s a misery.

I am running a poll on Twitter asking if nausea, pain or itching is the worst discomfort. Pain changes you the most. Nausea is the most consuming. Itchiness is the most irritating.

I probably feel that way because I am being driven absolutely nuts by the itching. I went for a short walk this morning before the heat dome took the temperature to 100 degrees in Colorado. It was still hot enough that I swear. And everywhere I swear I found myself with a light heat rash afterwards. My body is clearly on some kind of self hating response loop as that’s not normal even for me.

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Travel

Day 555 and Recovery

First off, today is a great number. I love this palindrome thing for me. It remains a surprise (at least to me) that I continue to hit these daily writing milestones but here I am just continuing this habit. I doubt I’ll stop anytime soon.

It’s always fun to have a “I did it” moment on a day where I’d rather not be writing. I’m jetlagged today after flying in from Heathrow last night. I did most of the transition just right but I still have a bit of that lingering sense of recovery one always has after travel.

I am always so hungry when I am jetlagged. I try not to eat at funny hours when adjusting for time zones but it’s not always possible. I’ve eaten at all the proper meal times this transit and it’s left me feeling massively over fed in addition to being hungry. Some of my body chemistry is clearly off.

I’m excited to be done with any planned travel for the foreseeable future. I’ve got my move to Montana in August but that’s not “travel” so much as it is a major life transition. Sure, it is an 8 hour drive from Boulder but at least I’m not getting on an airplane. I’d like to be done with the “back to travel” portion of my pandemic experience as it’s just not a ton of fun to fly anymore.

I’ll wrap it up here as I’d like to go to bed and see where day 556 takes me. But here at the end of 555 I am feeling good about this experiment and life in general.

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
Medical

Day 553 and Itchy

Pollution in the air, chlorine in the tap water, and overflowing filters on struggling air conditioners have left me an itchy mess. Not all parts of European have clean air or water as it turns out. I’m on the Ionian Sea and let’s just say the history of close economies and socialist strong men have left a legacy of infrastructure underinvestment.

My eyes look like I’m high as a kite. I’ve got angry raised welts across my arms. I have a lymph node that got backed up and is now the size of a marble under one armpit. A few of the hives have struggled to heal over and now require antibiotics. I love needing a course of Doxycycline on the road because a sore couldn’t fight off some exotic invader. No wonder they put enough chlorine in the water to scent an entire Olympic size pool. It’s clearly not enough.

Travel has always been a challenge when you are disabled. The indignity of finding yourself with seeping weeping yellow teardrops isn’t very relaxing. My travel pharmacy is working overtime as I carefully mix doses of Benadryl, Hydroxyzine, and Cortisone creams. And my travel cosmetics simply cannot fix the deep sunken blue eye bags that have developed from rubbing in antihistamines and spritzing in eye drops.

I really hope that no one at customs decides to get too curious about why I look so utterly fucked. I’m not entirely sure “I’m sensitive to pollution” is that believable to someone for whom this level of irritants is normal.

In less than a month I’ll be moving into the homestead in Montana. I’m dreaming of the clean air and sparkling rivers. I hope I can stay out for sometime. If I never have to leave “the last best place” on earth I’ll be happy.