Tag: Stream of Consciousnesses

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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.

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Chronic Disease

Day 559 and Stuck

I got stuck on the couch today. I’m not entirely sure why but I’m in the middle of a massive symptom flare. The pain is so acute and unrelenting that if I so much as sit up from bed I’ll get stuck in that position. I made the mistake of trying to eat lunch on the couch around noon and didn’t work up the capacity to get back into bed for over an hour.

This is becoming a theme on bad days. I’ll find myself upright for forty minutes completely unintentionally because moving, even to a more comfortable position laying down, is so painful I will put it off until I simply cannot remain upright anymore. It’s just that bad. Even the higher grade pain management isn’t doing shit. 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. And I’d love to wax philosophic about that but I mostly mean it literally. If you’ve ever wondered how I got popular on Twitter, it’s simply because it’s the only thing I can do when I’m physically stuck in place by pain. I thank the internet Gods that this has been monetizable through investing or I don’t know what I would do.

You could almost surely correlate the number of tweets I send with the pain scale of my day. If I’ve tweeted more than 50 times on any given day it’s probably because I am over a 7 on the pain scale. It’s 2pm and I’ve tweeted 32 times today not including my DMs. I keep hopping the pain will abate enough that I can shower but it doesn’t show any signs of letting up today.

Frankly I’m just relieved it’s only my spinal pain and not anything else more exotic. Earlier this week I was dealing with being itchy and then I had a migraine that took 48 hours and several Imitrax to break. Regular old spinal pain is at least a recognizable and normal return to form. But until this nerve storm abates I’m stuck. At least until something worse comes along.

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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
Politics Travel

Day 551 and Enjoy The Decline

I didn’t celebrate Independence Day yesterday. At least not in any meaningful sense. Typically I like to watch Roland Emmerich’s classic film Independence Day and cheer on American exceptionalism with explosions and hamburgers.

Instead I’m abroad and trapped in a small Airbnb that has me tethered to the nearest air conditioner. Pollution and climate change isn’t very good for enjoying time outside. 100 degree heat and a lack of EPA pollution standards are not a great combination so best of luck to my friends in Texas.

Nothing breeds appreciation for capitalism quite like spending time somewhere it hasn’t existed for long. Even at the end of the empire, American capitalism is so effective, our living standards still eclipse eastern block countries and other experiments in strongman style socialism. There is a reason people want to come to America and it’s not because we make it easy on immigrants or offer a strong social safety net.

It will be better to live in America for another fifty years or so than nearly anywhere else. Even with all our problems and bullshit, America at its worst is better than most of the planet. Entropy is a bitch though so you may you may as well enjoy the decline as eventually our lack of infrastructure and crumbling institutional capacity will destroy us.

Eventually “the crumbles” and the “Jankening” will eat away at our quality of life lead over the rest of the world. And let me tell you having been reminded of how much it sucks to live without the comforts of modernity, life this life to the fullest while you can. You are not going to enjoy the average lifestyle of a Balkan or Baltic state.

Which might be optimistic given some of the reactionary types striving to be the next Victor Orban. So might I recommend going out to eat at some fine fast casual restaurant and then making a Target run for things you don’t need. It won’t be around forever.

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
Travel

Day 549 and Rekt Travel

One more institutional bit of trust has frayed and snapped for me. I don’t trust travel any longer. Maybe I trust the big airlines and well traveled routes but off the beaten path travel isn’t for me any longer.

Someone didn’t fully understand my limits and I found myself struggling in a situation well beyond my physical means. The trust was so broken I don’t know how to even begin putting back the pieces from it. I’m exhausted yes, but the worst part is the fear I feel from being put in a bad situation and seeing just how incapable I was of fixing it myself. I’m not independent anymore. And I’m scared and angry about it.

I envy people who can have a situation change and have it’s impacts be immaterial on their day. Oh it’s inconvenient if the travel estimates were three times longer than planned. Oh it’s annoying that there is no air conditioning. Oh it’s frustrating that all these minor details are annoyances for you and intense health risks for me.

I fear I’ll come out of this experience paranoid and much much sadder. I feel stupid I couldn’t protect myself. I feel gullible that I let someone else handle the details. People tease me that I prepare for travel so aggressively. That it’s eccentric and odd and a sign of being a crazy woman.

But when the consequences are so expensive; a thousand dollars gone in a hotel scam, a fortune in gas, an extra thousand to weekend hour doctors to stabilize. I think it’s sensible to be extremely prepared. Nothing black pills you faster than being sick. I tried to act like I could be a normal person and just got rekt.

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.