Tag: Disability

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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.

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.

Categories
Medical

Day 545 and Stretched Time

Time has never acted like it is linear in my observation. It extends and stretches when you wish it could speed by. And it slows and circles back when you would most prefer it go quickly. Time is relative is a good joke, but also might be more related to a curse.

As I was waiting for a food delivery order today I could feel time unspooling. It stretched on into two episodes of some engaging but fundamentally disinteresting Netflix show. My head began to hurt. I remember taking an aspirin and getting a snack. I recall a phone call made to the delivery service order. And then my sense of linearity starts to fray. I’m not sure what happened next or in what order.

I think it was clear a migraine was coming on in the middle of this first act of swollen stretching time. But I couldn’t tell you for sure. Once pain hooks up with time it requires a Buddha or someone enlightened on the ways of Jhana. Still I tried to push myself out of the path of this time. Why not ordered a pizza as a replacement meal. That might be quick? I blamed the blooming migraine and it’s sister nausea on a lack of food. But in reality I was past the point of being helped. I was simply trying to avoid the oncoming path of the migraine.

I recall a pizza arriving but not the original delivery order. I made an attempt to eat. But I was in the grips of the time expanding migraine now. I took an Imitrax. I had some CBD. Perhaps terrapins and triptans could convince my mind that the moments of pain were short and fleeting. That was my best hope for experiencing the migraine in a positive way.

I put on a face mask. I sunk into a mindfulness practice. I noticed and turned over the kinds of discomforts I found myself in one by one. The emotional fears that I wanted distance rose up. The pain that bubbled around my body tightened, giving me a rationale for not wanting to being touched. A mind that wanted to drift far from others overlapped with my normal mind, this mind wasn’t forced to endure the noisy input from the world. All those experiences rose and burst forth and dissipated. Pain, distance, and fear came and went.

Consciousness seemed possible again. I had the sense that I could articulate some of what happened to me over the past three hours. That perhaps I could codify it in writing. It wouldn’t be as vivid but it would be there. The fear and failure and disprovals still existed but less acutely. The pressure on my mind had become less swollen. Time wasn’t threatening to extend out any other direction but forward. And maybe I could finally enjoy a bite to eat again. It has been five hours total since the migraine began.

Categories
Chronic Disease Emotional Work

Day 544 and Want of A Nail

I let something cascade over the past thirty six hours. I knew it would have an expensive energy budget but I wanted to try it anyway. I feel basically fine having made it through the entire experience, but now all I want is to sleep. And thank goodness as the consequences could have been worse than just needing more sleep. And I am reminded of the grief that comes from small consequences.

For want of a nail the shoe was lost.

For want of a shoe the horse was lost.

For want of a horse the rider was lost.

For want of a rider the message was lost.

For want of a message the battle was lost.

For want of a battle the kingdom was lost.

And all for the want of a horseshoe nail.

For want of a nail

I had a bout of perhaps food poisoning yesterday. It was unclear what the source might have been. Bad dairy seems likely. My whole body cascaded into responses. I was itchy and in pain and a range of histamine and emotional responses as the stress cleared through my system.

It’s always an exercise in frustration finding what little mistake or miscalculation sets off a disaster. Something so small can have massive consequences. I suspect it’s more about the power of the compounding effect. Or maybe it’s that giant domino meme. Sourcing backing to one silly little catalyst always shows you the fragility of your own life and circumstances.

I can’t tell if I find this reassuring and devastating. If the biggest life events always come from something small how can we event expect to impact an outcome. Or perhaps that is freeing. If everything comes from some unknown small then of events then we can simply life our lives unbothered by preparations and foresight. Something random is bound to knock life off track.

I think I’ll take the sanguine view. How could I possibly let myself worry when a little detail like a boot of nausea can set off a whole day. It’s a Franz Ferdinand approach to life. Sometimes a spot of political trouble in the Balkans sets off the whole world. It’s always going to be something.

Categories
Chronic Disease Emotional Work

Day 542 and Energy Budgets

I’m not much for active time off. Or being active at all really. I have a limited energy budget so I watch my energy expenditure carefully. Other people budget their money. I budget my energy.

I’ll often find myself jealous of other people who enjoy active hobbies. My husband plays tennis and shoots competitively. Every weekend he is off doing fun shit outside. He could easily play a sport, socialize afterwards and still have the energy to go out for dinner.

Meanwhile I’m probably in bed. I have plenty of fun, lower energy usage hobbies. I read a ton of fiction. I play games. I am working on my foreign language skills (be my friend in Duolingo), and of course I’m a notoriously active Twitter shitposter. All things that can be done while laying down!

And while I love all of those activities I wish that I didn’t have to run the math on how much a coffee with friends would set back my energy budget. I long for the opportunity to simply throw on clothing and head out the door without fear of how that might impact the rest of my day or even my week. But I run on the spoon theory just like your average disabled person.

My fear is that my energy poverty is isolating me. I struggle to explain that I’d love to spend more time with people but I need them to commit to cheaper energy expenditure options. But even the energy required to explain how friends and family can accommodate me is a challenge. It embarrasses me there I need everyone to work around my needs. And I’m often too scared to be demanding about what would work for me. So instead I just spend my time and energy alone.

If you are interested in learning how to make the effort to spend time with someone with energy poverty I hope this post helps. For instance instead of playing a round of tennis, perhaps you could come visit me at home and we could quietly chat on the couch. Instead of going out to dinner we could order in takeout. And no I don’t mean cook at home because then I’d need to plan, shop, cook and clean up afterwards. I very much mean order food on disposable plates so it’s minimal energy outlay. Disability accommodations are not very eco-friendly. It’s a different calculus of resources.

You may have to do a lot more work to be friends with someone managing a disability or a medical condition. If they don’t respond it’s not because they don’t want to see you necessarily. It could just be that you messaged on a bad day and it slipped through the cracks. We need you to actively work to be present for us. It’s a big ask but it is appreciated.

Categories
Chronic Disease

Day 540 and No Pain

I’ve come to accept an ambient level of pain as part of my daily existence. I’ve logged over fourteen hundred discrete pain measurements over a three year period. It’s likely one been in pain for a bit longer but those are the documented years since I had a diagnosis and began working to overcome it.

I’ve only had a handful of days where I’ve logged below a three. The pain scale most of the medial industry uses is from 1-10 with 4-6 being moderate pain and 10 being unbearable give me the opioids pain.

I typically log somewhere between four on a good day and seven by it’s end. I’ll usually have an eight or a nine a few times a month. Those knock me flat and I won’t be able to get out of bed. I can work and do basics when I’m at a five or six but it’s very tiring. And frankly it took a lot of mindfulness work to learn to work through pain.

Pain is actually exhausting. It’s hard to even begin to describe how much it reduces your total capacity. Articulating pain has eluded much finer writers than I. Just because one can live through it doesn’t mean one should.

To have had a morning of relief felt truly miraculous. It was sadly short lived. Some stresses hit my day and my pain is back up to a four. I can live with a four. I have been for sometime. But to finally have seen the light of having a pain free day after years of struggling will sustain me for a while. To know that it’s possible. It felt like a miracle.

Categories
Aesthetics Emotional Work Travel

Day 531 and Overpacking

I used to be an expert packer. If you do some deep Googling on me you will find lots of travel tips as at one point I was the co-founder of a travel cosmetics company called Stowaway. I was on the road a lot and became quite practiced at getting my entire life in a carry-on.

I can’t seem to pull it off anymore. At first I thought it was because I didn’t travel during the pandemic. Then I blamed it on being modest disabled from all my various health nonsense. But I’ve just stumbled onto the real reason

I’ve got fantasies of having a life where I still do things.

By packing high heels and nice dresses and several colors of lipstick I am telling my disability “not today Satan!” Except then of course I don’t use any of it. Because I am in fact still disabled.

I packed an outfit for a black tie gala when I went down to Austin. Because you never know when you might appreciate having a gown on hand and it didn’t take up much space. Now mind you I still attended an actual gala, but I ended up wearing a tank top and camouflage pants. Crypto is low key that way.

While I am introverted, and not terribly keen on socializing, I haven’t quite given up on a world where I go out if I want to. I want to feel like I’ve got the option to say yes to a nice dinner or to a meeting up at a cocktail bar. Leaving behind my favorite pair of Gucci heels is cutting off some part of my life in my mind.

If I only pack comfortable clothing and sensible skincare I feel as if I’ve conceded something to my disability. If I don’t pack a nice dress, even if my entire trip is planned around being casually at home in an Airbnb, I feel I’ve somehow given in to the pain and fatigue.

I’m not entirely sure if this is something I can work through. Or even if I want to work through it. I hate having to make room for medication and supplements and knowing it means there is no room for a hair dryer or a second pair of heels. I’d rather overpack. I’d rather have some sense of optimism and ambition.

But then I’ve got to get through customs at Heathrow and I’ve got no intention of checking any of my luggage during a chaotic summer for travel. So it might be time to try getting back to traveling light. And that means fewer cosmetics and clothing.

Categories
Preparedness Travel

Day 528 and Oppressive

I would love to be writing about my impressions of the Consensus experience in Austin. I had a terrific time seeing friends & colleagues, the content was good, my talk was well attended (and well received) and I genuinely felt the experience was worthwhile. My general impression is winter is good for crypto as we will get back to building.

But as I wrap up my trip all I can really focus on is how oppressive the heat feels. How exhausting it is to consider it’s consuming nature at every step of your day. The heat is edging towards the point of being hostile to life. 29 million people live in Texas and there is no focused effort to harden infrastructure for climate extremes or drought. If you want to picture what life might be life here for your children read the Water Knife by Paolo Bacigulipa.

Last night I found myself literally sitting on top of an air conditioning vent in the attic of a private house to avoid the evening heat. I was hosting a little gathering with a few close friends (and new folks) on top of what eventually turned into a Burning Man reunion. As the older folks (otherwise known as anyone over the age of 35) and the square folks decided it was time to head out for dinner, we piled back into the night heat. The sound of revelers dancing and laughing in the 95 degree heat impressed me. Texas was showing life in the face of death.

In what I can only call a rookie move, we went to a community meet up in the backyard of some sort of coffee house and Eastern European bun shop. Even at 10pm it was too much for me. The adults decamped to a nice restaurant for air conditioning and steaks. It was bliss. Expensive privileged bliss. And yes I enjoyed consuming more than my share of resources. I’d contributed to the resource depletion that has changed our climate and made me suffer.

My period started this morning so I’m obviously tired, bloated and cranky. The last thing I want to do is cope with heat that’s supposed to get up to 109. I’m doing the dance where I rush as fast as I can into a waiting car. I try to avoid the natural world and it’s cruel requirements. We’ve not conquered nature, merely found ways to shield ourselves from its worst ravages. But those protections only intensified the natural patterns of our planet.

I idly thought to myself if I was ever to have a daughter I’d name her Cassandra. That could be quite a parental trauma to give a child. Imagine the anger she might feel dealing with a world where it’s either innovate your way to safety or accept a declining living standard with degrowth. It’s a horrifying choice. I want to be an optimistic natalist that thinks we can innovate a better future for our children. I want their confidence.

But it’s hard to be confident about a future where an enormous vibrant place like Texas will be forced to run the gauntlet of a chaotic age to a singularity not everyone will live to see. I wouldn’t place my fate in a place with drought, extreme heat and reactionary right wing populism. But I’m also not sure I’ll ever come back. But I hope I do.