Tag: Disability

Categories
Biohacking

Day 297 and Day of Rest

October has been a whirlwind for me. Or maybe it just feels busy getting back to a normal pace of life. I had a shitty end of summer as part of an effort to decide if and then when to take me off my immunosuppressive medications to get me vaccinated so I could develop antibodies. Maybe anything would feel busy after that.

I lost about six or seven weeks to the whole vaccine situation. Thankfully nobody cared since it was August. But I cared. I didn’t do anything for weeks from all the side effects and management of the process. I only bring this up (and I should write a full post about getting vaccinated as I wrote one about the decision and its risk management) because it’s been a while I needed to actively rest.

I had nearly two months where I didn’t couldn’t pursue any strain like weightlifting or even hiking because I was under enough strain from my own body. And I know this because I used a Whoop to track recovery and strain. Biohacking is a bit of a hobby. I had low strain scores and virtually no activity. I spent all my time in what Whoop calls recovery. But not this week. This week I had strain. And then I learned what a poor recovery from too much strain looks like.

A Whoop recovery score of 32% based on a terrible HRV of 13. Plus I’ve got tachycardia.

This week in addition to a significant workload (ask me about my rolling fund if you are into that sort of thing) I decided to pick back up my powerlifting hobby. I changed up my diet to eat enough protein and calculated out new one rep maximums for a basic starting strength routine.

It felt awesome. Squats are the best. And my overhead presses were better than I imagined. I had this moment of hope that maybe I was well enough to train again after several years of health trouble. I felt empowered. I was working through the delayed onset muscle soreness with a Theragum (something I normally cannot tolerate with my past inflammation levels). I was doing range of motion restoration work. I thought I had it all under control. And then on Friday I saw my resting heart rate variably or HRV start to drop.

I thought oh shit I must be getting sick. Normally a dip in HRV is a hint that my inflammation in my spine will kick back up and all the exciting secondary health stuff like fatigue (from pain) and migraines (from the shitty circulation from the inflammation) will go in circles.

But it turns out that I’m not getting sick. My symptoms didn’t flare. Instead I was tired.

Honestly I’m a little pissed. Normally I only take rest days when I feel sick. I only feel tired when I am sick. This being tired and having my heart be strained because I was overworked physically is bullshit. Normally if I am tired it is because I am fatigued. I mean that feeling you have when you are sick because your system is going haywire. It’s not the same thing as tired. Being tired isn’t debating. Being tired is actually great. I just need to take it easy today because I did too much. Not because I’m sick. Thank god it is Sunday so that day of rest is well timed.

Categories
Emotional Work Internet Culture

Day 283 and Presencing

Nick Couldry uses the term ‘presencing’ in his book Media, Society, World to talk about how we go into digital or media spaces to manage our presence over time. It’s a way we cultivate a sense of wider purpose through a public presence. And because of the way suffering and trauma marginalize people, this act of making yourself more visible is even more important.

I was browsing Anne Helen Peterson’s newsletter Culture Study when the above quote hit me over the head. The interview was on the topic of ambiguous grief with a media studies professor Samira Rajabi. While the writing is almost uncomfortably academic it resonated with me immediately. I have been engaging in presenceing for the entire course of my illness. I just never had a name for why I felt like a public presence mattered to me.

While it sounds unbelievable, I never considered that I might be using social media as a way to give myself visibility in the face of the trauma of an extended and chronic illness. I’ve always been a heavy user of social media so I didn’t find it unusual that I spent significantly more time on Twitter and blogging as I went through the diagnosis and recovery process.

I had been used to being visible in my previous life. I was regularly in media for my startups and I had cultivated some amount of public presence on and off since I was in college. But I didn’t really become a Twitter personality that cultivated a presence and interactions and a voice until I got sick. Without knowing it was presencing myself.

In American culture in particular, there is a strong preference for triumphant stories. So we can conceive of suffering if it can be managed and overcome, but rarely do we know what to do with a story of chronic pain and suffering and how relentlessly it reminds a person that they no longer fit into the so-called “normal” world. To me, it becomes even more important for those people to be seen.

I really wanted my story to fit into a narrative when I first got diagnosed. I had all kinds of ambitions of overcoming and healing that were quickly dashed on the reality of my life. I was never going to be normal again. And I hated that. I still find myself overcome with grief at the prospect that there is no triumphant return.

But I want people to see that grief. And see that it’s alright. That life went on. I didn’t lose myself. Even in pain and illness, or perhaps because of it, I’ve gained ground in finding myself. The pain and degradation of illness is ugly and shitty but also powerfully transformative.

I have not given up just because the narrative isn’t clear and the story has no simple arc. Any impression we have that stories have structure is imposed in hindsight. We love our post-hoc rationalization. We love our pattern recognition. But the through line is never clear in the moment. And that’s why presence matters. We all need the visibility of the truth even if it doesn’t fit neatly into the story our culture has given us.

Categories
Chronic Disease Emotional Work

Day 267 and Morally Neutral Accommodations

I resisted the idea of investing in a zero gravity chair. Because of my spinal condition, I find it more comfortable to work for extended periods when laying flat. Working from bed isn’t exactly ideal, emotionally or practically. And yet I wasn’t ready to sink a significant investment into my work station. Thankfully I ended my procrastination this week with the arrival of my new altwork station.

Altwork desk in a zero gravity position

It was a significant expense but I can now comfortably spend a full workday in a chair without any adverse affects. The only downside appears to be good old fashioned tiredness at the end of the day. I’m thrilled with the investment.

I wonder why I resisted the idea of investing in a comfortable desk for as long as I did. Maybe part of it was shame that I needed what felt like such an extravagant accommodation. I didn’t feel like I was worth it. Or perhaps I felt a disability isn’t something I wanted to invest in. It was something I wanted to invest in overcoming. Spending money on making my life more comfortable and functional with my disability was hard for me to swallow.

I felt if I worked hard enough at managing the symptoms of my ankylosis that perhaps eventually I’d be able to manage sitting at a regular desk for a full work day. But what kind of fools errand was I setting myself on that I desired not only discomfort but to work myself up to enduring even more discomfort? My goal was to make myself uncomfortable.

I’ve long frustrated my doctors by resisting pain management medications. I tell myself I should grin and bear it when it comes to pain. I treated pain as if it were a moral good. I suspect I was doing something similar with resisting a comfortable chair. I’ve got a problem with equating suffering with morality.

Thankfully I was able to set that aside and buy the zero gravity chair. Now rather than suffer and tell myself I’m a better person for it, I’ll actually get my work done in comfort. Which should have been the goal all along.

Categories
Aesthetics Internet Culture

Day 264 and Shiner

I’ve been eyeing the full recline zero gravity chairs and desk combinations for a while. Because of a spinal condition sitting upright at a regular desk is tiring for me. It seemed like an extravagant purchase as they are well over $4000 at a base model but being able to spend a full work day in comfort reclining seemed worth the investment.

The Altwork chair and reclining desk

Last week I finally decided to pull the trigger and buy the chair on the advice of executive performance coach Dr. Julie Gurner who helped me see that investing in an environment that accommodates my physical needs is worthwhile.

Today was set to be the big set up and reveal day but in the excitement Alex was trying to take a picture of me laying flat while working and he dropped my phone form about three feet over my head onto my right ocular bone. It hit so hard it formed a blood bruise immediately. It was such a shock I didn’t even yell. So rather than playing with my new desk I’m icing my face.

Blood bruise from a phone hitting my face while photographing my new chair.

It hurts like hell. My face is swelling and I’ve got that jumpy nerves thing that comes from a physical trauma you didn’t see coming. So tomorrow I’ll finish setting up my new workstation. Right now I’ve got to stave off a shiner.

Categories
Emotional Work

Day 252 and Women on the Spectrum

I’ve always been an introvert, but this tends to surprise people as I socialize reasonably well. You wouldn’t guess that I find being around others overwhelming and exhausting. I asked on Twitter today if anyone else ever got sensory overload?

I’d accidentally stressed myself by combining an intense physical activity with an intellectually demanding one, forcing myself to process touch, sound, and audio. I received a lot of interesting replies back but one friend asked me gently if anyone had ever tested me for the autism spectrum.

I had not ever considered it. The typical struggles I associated with non-neurotypical spectrums weren’t ones I personally had. But he showed me a fascinating article on how women get missed in diagnosis as their patterns are quite different. What I thought of as autism is the dominant presentation in men. In women it shows up differently for many of them. Naturally it is less studied than in boys and men so we’ve got less scientific study to go on. But these presentations all match me. Do please keep in mind that I don’t know anything about the space, it’s politics, or what is or is not appropriate so go easy on me. I’m just noticing that these are patterns I see in myself.

  • Work very hard to “camouflage” her social confusion and/or anxiety through strategic imitation, by escaping into nature or fantasy, or by staying on the periphery of social activity.
  • Show different sides of her personality in different settings.
  • Be more prone to releasing her bottled up emotions at home through meltdowns.
  • Be exhausted from the work of deciphering social rules or of imitating those around her to hide her differences.
  • Be anxious in settings where she is asked to perform in social situations.

This is interesting enough to me that I’d like to explore further if I might be slightly on a spectrum. Perhaps the exhaustion I feel from socializing is more than simple introversion and should be treated as as something I can accommodate rather than admonish myself over.

I remember spending much of my life working hard to master and emulate social and class markers and behaviors. I didn’t find them confusing. If anything I made a study of it.

I became so good at social cues I would often get praised for it. But I often resented the energy these performances required. When I would express anger or frustration I’d be scolded, told I wasn’t a nice girl, or even told that I was a bad person for not wanting to spend time with people. As an adult I have the choice to use my energy and focus as I see fit.

Categories
Chronic Disease Emotional Work

Day 248 and Trusting Nothing

I am learning to appreciate the value of doing nothing. I have always struggled with the human “being” part of the equation. I would prefer if we had been called human doings. But I’m slowly being convinced that’s just ego talking.

I feel terrific if I do nothing. I don’t even mean doing things you might consider recreation. I mean I don’t do a damn thing but still in bed flat on my back. I let my mind wander. I’ve learned that leisure isn’t my style. I can’t do something and experience it as nothing.

Maybe I’ve got some kind of struggle with getting and staying in a parasympathetic state. Maybe I prefer the fight or flight. But it is in the rest and digest state of laying down that I finally feel at ease. It’s from where I bring myself back. It would be nice if I fully relaxed when doing my nails or hanging out with other people.

But as the only thing that truly gets me into parasympathetic is stillness I will trust that nothing. I’ll remind myself I need to do it. Maybe I’ll even be on of those people that calendar it. Sorry I’m out of office as I need to lay flat for the day. Come back tomorrow!

Categories
Preparedness

Day 241 and Other People’s Disasters

Hurricane Ida made landfall in Louisiana today on the 16th anniversary of Hurricane Katrina. Watching disasters in other cities has the sad side effect of making me go through my emergency gear. After living through Hurricane Sandy in New York I felt it a civic obligation to be prepared for emergencies. Ready yourself so you can help others is my philosophy of prepping.

I spent the morning doing a complete overhaul of my go-bags pharmaceutical set up. It has been a while since I had rotated out some medications and I wanted to add in more drugs for situations where it might be some times before we could reach a hospital or medic. Worst case scenarios crossed my mind.

Disasters often get portrayed as these dramatic events but more often it’s just neighbors helping each other through a bad time. That means I stock a trauma kit along with shit like anti-diarrhea drugs and cortisone. More likely to be itchy and have an upset stomach than a trauma bleed so prepare for the basics first.

But I’ve had the basics down for a while. I’ve been prepping now for several years with increasing seriousness. So sometime this year I decided to prepare for worse. I thought it wise to have a stash of prescriptions for situations where doctors aren’t coming, maybe at all, including antibiotics, steroids, antihistamines, NSAIDs, caffeine, and an array of drugs that are, well, controlled substances and I swear I have legitimate prescriptions for all of them and am monitored by several physicians who work in coordination. But you know, the good stuff.

I say that as if it is remotely recreational to break a leg and require an opioids or be suffering from shock. If someone is having a panic attack because their world is coming down around them I think fuck it this is why it’s good to have an Ativan. No judgements.

Plastic baggies filled with medications.

Disaster hits a little different when you have a chronic disease. You have to think about scenarios where you are actually in the most vulnerable groups. That those worst case scenarios you see on TV could actually happen to you. Shit hitting the fan would actually mean your life if you didn’t prepare. And so I’ve scrapped together a small pharmacy over the past few years. I’ve rationed doses and asked for extra refills. I’ve squirreled away a dose here and there between insurance coverage and extra days. It’s actually quite hard to be able to have as many additional drugs as the CDC recommendation for an emergency. No seriously they suggest 7-10 days of extra medication. Can you imagine most Americans affording that? It’s a fucking slow moving American tragedy we are told how to survive but hobbled in being able to enact any of what the Fed suggest. It’s no wonder Americans don’t trust the government for anything.

The pandemic has solidified this sad truth for me. So I’ve learned new skills. I worry that it’s hard to rely on community when most communities are struggling already. It’s an impossible ask. And so we are forced into another circle of individualism and personal responsibility because really what other option can you imagine having. Because next time it won’t be some other persons disaster on the TV. Next time it might be yours.

Categories
Chronic Disease

Day 240 and Working for The Weekend

I forgot how great it feels to be so enthusiastic about work that it absorbs every viable hour of your weekend. I used to feel this way about work all the time, but as I’ve struggled to adapt to working with a chronic illness some of the joy got stripped away. It became all about juggling self care, rest and moderation. And I hadn’t found my balance yet.

It isn’t so much that work didn’t hold my attention, on the contrary, rather I became afraid of letting myself get too absorbed. If I overdid it and missed a medication or a meal or even a sign that I needed a break I’d find myself in pain. I’d crash if I wasn’t careful to watch my time and energy.

I would get into awful start stop cycles that gave me the worst of both worlds. I struggled to sustain a flow state because I was constantly vigilant for needing to take care of myself. And I’d beat myself up when I needed the rest which made it even more challenging to sustain the health I felt guilty for not having.

“ I feel bad. I’m going to take today off. Ok but make sure you feel so guilty about it you don’t get any real rest.” Dino Comics

But something has shifted for me recently. The fear and doubt that has hung over my attention is lifting. I am beginning to trust that I can work and break without hurting myself. I can accept breaks more readily than I used to. I don’t feel as if I need to be as vigilant to watch for signs of hurting my body.

Today I was able to enjoy multiple flow states. I worked with a founder on their fundraise. I worked on some writing for my fund Chaotic. I briefly felt overwhelmed, and while I did panic for a moment I stopped and rested. I asked for some help. The problem got solved. And now I feel satisfaction at a good work say. No pain. No crash. No exhaustion. No guilt for taking breaks. Just the quiet joy of having achieved my goals for the day.

Categories
Emotional Work

Day 231 and Afraid of Feeling Fear

Being sick has left me with some scars that I am working through. Currently I’m afraid of pushing myself to my limits. I don’t know it for a fact but I fear some of the severity of my illness was tied to the overwork that is required when working in startup life. So now I’m afraid of overdoing things physically. I’m struggling to even set the boundaries of what 50% capacity would look like.

This isn’t the first time I’ve struggled with the question of my capacity. I’ve been a fan of what I call the “Gattaca” method since I was a child. “Never save anything for the swim back.” But now having experienced the worst case scenario of being unable to work for two years I’m gun shy. That common knowledge says failure “is never as bad as you imagine” is bullshit. Losing two years of my life was fucking awful. What if next time I give my all and I lose more than two years? I’m running myself in circles with this fear without any indication that it will become reality.

When I was a teenager I rode horses. I liked cross country eventing where you jump over obstacles on an open field. It’s a bit dangerous. That’s how Christopher Reeves got hurt. I had plenty of spills but it never really upset me. I always got back on the horse. I wanted to become more competitive so bought a thoroughbred who was being retrained from being a racehorse. I thought I was a talented enough rider for the job. I wasn’t.

He was a high strung panicky creature and threw me into a wall. I cracked my helmet, blacked out briefly and was diagnosed with a concussion the next day. Despite the severity of the fall, I got back on the horse immediately. I was afraid of being scared. So I pushed through.

Turns out I should have just felt the fear. I should have gone to the doctor, allowed myself to recover and not pushed through it. I never fully recovered my nerve about that concussion. I just slowly circled the drain emotionally and my fear won over my enthusiasm for rising. I never went back to competing in eventing. Instead of working through my fear I chose to ignore it. That turned out to be a sure fire way to let fear win in the end.

I don’t want to be afraid of being scared. I want to embrace my feelings and their origins. I want to come to terms with them. Because unlike horseback riding, I intend to keep working.

Categories
Chronic Disease

Day 221 and Somnambulance

Around 1pm today I was overcome by a kind of drowsiness. I couldn’t seem to shake the feeling so I lay down. For the past 5 hours or so I’ve been in a not quite waking not quite sleeping state. I wasn’t dreaming but I couldn’t force wakefulness on myself either.

I had to crawl my way into just enough consciousness to call and text my therapist to let her know I wouldn’t make my session or group therapy. Had I not seen proof I left a message when I woke up I would not have been surprised to learn that I had been somnambulant texting. I barely recall managing the effort.

I had a medical procedure a few days ago so I am likely still recovering from the stress my body endured. But I’ve felt reasonably energetic. I was entirely unprepared to fall into a liminal state between consciousness and sleeping for most of my day. I could tell I wasn’t fully awake but I couldn’t quite tell if I was asleep.

I kept trying to force wakefulness upon myself only to find my mind falling further away from the effort. It felt like some horror movie effort where a character has been put under but is still aware of what is happening to them. I didn’t love it. But clearly I needed the sleep. I was just barely able to get myself up to take my evening medications. Certainly wasn’t what I was expecting out of my Monday but so it goes.