Tag: Illness

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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.

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Biohacking Chronic Disease

Day 287 and Routines

I haven’t figured out how to incorporate my routines into my busier workdays. I feel like I’ve written this blogpost at least 3-4 times but somehow I never seem to find balance easily when I make big changes to how I spend my time.

All the self care efforts that has become comfortable rhythms go by the wayside as soon as I add in new obligations. And then my body gets pissed that I’m not taking care of it and I get into the same pattern of two steps forward and one step back.

You’d think after experiencing this issue multiple times I’d be better at ramping change slowly but I remain the sort of person that loves to dive into shit head first.

After much enthusiasm and progress I’m writing todays post from a physically mediocre places. My stomach is upset. I am fighting off a migraine. My muscles are tense. I’m anxious about all of these symptoms turning into a messy cascade. So I’m turning to my pharmaceuticals, taking a mess of prescriptions, and going to bed. Maybe tomorrow is another chance to find a better balance.

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Chronic Disease Preparedness

Day 286 and Appointments

I’ve been going to a bunch of appointments in the past week or so. And I’ve got a bunch more lined up in the coming weeks. My calendar is a mess of obligations; optometrist, dentist, gynecologist, and the hair salon for starters. I feel like I’m drowning in appointments.

I made the mistake of not capitalizing on the last dip in case numbers in the late spring and early summer and missed the pandemic window before delta. I didn’t want to make that mistake again so I’ve been hustling to have the appointments that I’ve been putting off for the last 19 months. Check my eyes, check my teeth, check my fiddly bits. And yes cut my hair. God is my hair long.

There is so much maintenance work that has been piling up that I wonder how I’ve made it through the entire pandemic putting all of these life chores off. Has everyone been putting off their appointments? Was it just me? Or is it just people who are still trying to limit their exposure to infection?

I grant I’ve got a very different risk profile than the average American but I feel like it’s probably not unusual to put off stuff you are supposed to do but can probably live life without. But should you? So far no one has found anything wrong but maybe it’s just luck that I could go for two years without someone checking my tits or my teeth.

I didn’t put off any of my truly crucial health appointments over the pandemic but I am sure other people did. The eye doctor is something I tell myself I can put off for two years but maybe that’s a rationalization. Did others do that with annual physicals? With breast exams? What else have we been putting off in our appointments. It feels like I put off my entire life. And now I’m scrambling to fit it all in before something else has happens.

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Emotional Work

Day 262 and Patience

I am in a transitional moment in life. I’ve spent the last two years climbing to my own personal mountaintop and studying at the feet of my own body’s masters. Being a student of myself and my limitations has been illuminating.

The montage scene of growing and becoming stronger in the monastery turns out to take a lot longer in real time than it does in the movies. Probably why they only show you the super cut. I did get to do most of it in isolation though so I guess that’s suitably cinematic. Most people probably imagine vows of silence not Tweeting alone from your bedroom during a pandemic but the effect is basically the same.

I can sense that I’m coming to the other side of some things. That my time becoming myself on the proverbial mountaintop is almost over. It is time to come down from my personal monastery and rejoin humanity with my learnings. I am an expanded soul from the experience of this hardship. But I’m also not quite finished with my journey back yet either.

Maybe in this metaphor I’m looking down on the city I am meant to rejoin. Or maybe I’m in a camp on my way down. Either way I feel eager to get back to the business of living in civilization. But I’m not there yet. Something is whispering patience to me. But I’m so close. I’m like an animal that knows it’s close to home and speeds up their pace. I’m anxious for the journey to conclude. But I’m not quite there yet. If you are waiting for me I’ll be there soon. What’s a couple more weeks after a couple of years after all?

Categories
Chronic Disease

Day 224 and Wanting a Break

I don’t want to write today. I feel foggy, unfocused and anxious. I had to have a medical procedure last week whose preparation was destabilizing. I felt pretty good coming out of it but a few days on I guess recovery has its own logic.

I don’t want to feel like this. In order to have the procedure done we had to remove me from all of my medications. Not normally something you do unless you have no other choice. Which in the end I didn’t feel I had. And I’m struggling. Modern medicine works pretty well. Some of science is neat.

I don’t want to be writing about any of it though. I’m scared, tired, sad and angry about all of it. I want to be alone. But my mind is so fatigued I cannot come up with any other topics. I tried to focus on fun things like the PR DAO I’m working on and some investments I’m excited about.

But I just can’t seem to make sense without a lot of energy and focus. And the doctors would prefer I keep the energy for my recovery.

So I’m stuck writing baleful takes about sleeping and migraines. I’d rather crawl into a hole and lick my wounds in private but I promised myself I’d write every single day.

And it seems I’m unable to write anything remotely intellectual. It’s all emotions and physical ailments. No wonder I’ve been watching so many BBC period dramas. Their leading ladies seem so relatable at the moment. Which is why I’m stuck writing about life as if I were some talentless version of Virginia Woolf. I’m incapable of writing about anything else but the consuming nature of feeling like shit. Write what you know is all fine and well until the thing you know most intimately is physical frailty.

On the bright side I did learn today that Herman Melville and I share the same diagnosis; ankylosing spondylitis.

Herman Melville endured chronic pains in his joints, back and eyes, symptoms consistent with ankylosing spondylitis, an autoimmune disease.

Maybe pain relief was his white whale too. Of course, he didn’t have the benefit of biologic injections like IL inhibitors. Maybe that’s why he wrote the great American novel and I’ve got a daily writing habit. I know glorifying and romanticizing suffering is a habit I’ve got to kick.

Categories
Chronic Disease

Day 223 and Actually OOO

I’ve got a nightmare of a migraine. Ironic that I should right at such length about being available or out of office yesterday only to find myself utterly incapable of being pretending today that I am available. If you want a better essay of the day then I’d click out to yesterday’s as the rest is just an exercise in willpower not quality.

If you’ve never had a migraine consider yourself lucky. I’m prone to about one a month and I’ll let you use your imagination as to why they are so regular on a monthly cadence

For this particular migraine the light and noise sensitivity are debilitating but today it’s the nausea that’s the worst. Somehow the pain and tension can be so bad you literally cannot imagine tolerance for food or smells. I’m struggling to drink water.

I can’t really fathom how I’ll have enough to say to qualify for “write every day” but here I am with the CMS open and typing out sentences that appear to be coherent. I suppose three paragraph with a few links, a title and the proper tagging qualify as showing up for the day. Every day I write. Every day some small creation. Even though at the moment I’m trying to work myself up to the idea of eating some rice in the hopes that I’ll be able to take some medication and settle my stomach. Good enough.

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.

Categories
Chronic Disease

Day 218 and Brain Fog

Being physically sick sucks. But having your mind take a turn for the worse can be worse. I’ve written about being in the grips of pain and the fear I have of exhaustion, but I don’t think I’ve written about what it feels like for one’s mind to struggle.

Whenever I read about recovering from covid and it’s challenges I can’t help but notice how often brain brain gets mentioned. The Lancet published a study of over 80,000 people that offers some concerning evidence that Covid has significant impacts on brain function.

“Finer grained analysis of performance across sub-tests supported the hypothesis that COVID-19 has a multi-domain impact on human cognition.”

If you don’t rely on your mind to make a living maybe the prospect of losing cognition isn’t as scary. Though I doubt it. I’d argue that the primary fear of losing one’s mind has much more to do with feeling one cannot communicate as effectively with one’s loved ones. We tend to get used to our cognitive capacity and finding it lacking can be quite terrifying.

I’m quite lucky that my own disease, ankylosing spondylitis, messes with my spine and not my mind. I’ve generally retained my sharp mind even if my body occasionally fails me. But I’ve still felt the frustration and confusion that comes with reaching for understanding and problem solving and coming up short.

Occasionally if my pain is bad enough my mind feels like it slows. It’s almost imperceptible but it’s still there. Like I am grasping for something that’s just an niche or two out of place on a shelf. You reach expecting it to be there and startle with confusion when it’s not. You adjust and get your grip and can carry on, but you are frustrated as you felt sure that the extra inch wasn’t supposed to be there.

Lucky for me this is fairly rare and easily solved with an NSAID. Once acute pain recedes my thinking is quick again. But what if it wasn’t? How would I learn to cope with that sense that my thinking wasn’t as clear as normal? Sure, maybe aging will do me in eventually, but I wouldn’t chose anything that could slow my mind.

Categories
Chronic Disease Internet Culture

Day 217 and Reasonable Accommodation

Accessibility is an interesting topic for Americans as we pride ourselves on being the land of opportunity. Every citizen has the right to life, liberty and the pursuit of happiness. Of course, in practice the outcomes of this pursuit are wildly unequal. But we all generally agree that every American should be given the same chance to pursue it. We want the American dream to be accessible. Equal access matters.

I feel this particularly strongly because I’m disabled. I have an autoimmune immune condition called ankylosing spondylitis. My immune system attacks my body and it manifests in occasionally inconvenient symptoms like swelling in my spine that makes walking painful.

Thankfully I was born an American and I live in the twenty first century. We’ve got modern medicine. So my life can basically be normal thanks to immunosuppressant drugs. If you didn’t know my medical history (ok that’s unlikely as I write about it, like, constantly) you couldn’t tell I’m disabled. I’ve had absolutely equal opportunity to pursue life, liberty and happiness. I’m deeply patriotic as a result. No one treatments me like a second class citizen.

But I get the impression that some people might try. Invisible disabilities have some upsides, you get treated normally, but the downside is you can see the kind of unconscious discrimination and bias people have because they’ve got no useful signifier like a wheelchair which reminds them to keep their mouth shut around you. Which means I hear a lot more of what people really feel. For which I’m grateful. I’d rather know if you think I’m less equal than you.

Watching able body healthy folks discuss vaccines has been a real trip for this reason. The sick and the elderly are ostensibly the reason we engaged in efforts like stay at home orders and now vaccinations and masking. We’ve made reasonable, and occasionally unreasonable, accommodations for the sake of our most vulnerable. The vast majority of Americans did what they could.

Now the accommodations are becoming more more permanent and less inclusive. And I wonder if they are reasonable accommodations for everyone. New York City is instituting vaccine requirements for indoor dining, cultural venues, and indoor public places.

People are going to get a really clear message: if you want to participate in our society fully, you’ve got to get vaccinated. It’s time,” NYC Mayor Bill de Blasio said at a press conference.

I want to participate in society fully. But getting vaccinated hasn’t been easy for me. I am one of the small number of immunosuppressed Americans for whom the vaccine either isn’t an option at all, comes with significant risks, or doesn’t work at all. It’s a misery to not be able to take advantage of one of science’s most significant achievements. I want to be successfully vaccinated very much. It may be possible but it’s costs are very high for me.

Now I grant I have no intention of going to a concert in Manhattan but it hurts to see people casually suggesting that all people who remain unvaccinated did so as a personal choice. It’s not really a great choice pursue a destabilizing course of treatment that may take away my ability to walk and cause significant pain. But sure. Call it a choice. I wouldn’t wish it on you.

People like DeBlasio do not seem to recognize that the message being sent is I can particulate fully in society or I can be one of those dangerous anti-society anti-vaxxers. It’s “one of us or one of them” and the “them” are bad guys. I’m not anti-vaccine. I think it’s generally safe for the vast majority of people and I hope that if you are healthy that you make the choice to get one. But not all Americans are so lucky.

So I beg you to reconsider your choice of words when discussing how much you disdain the unvaccinated. How it’s your choice to be an outcast of society. And don’t phrase policies like DeBlasio did. I deserve to be a part of society too. You made reasonable accommodations for people like me. Saying that I’m now a societal outcast is exclusionary. It’s pretty fucking in-American. Find a damn reasonable accommodation maybe.

And sure I’m not going to be attending anything at Madison Square Garden. But don’t legislate that into a final demarcation. Don’t caste me out forever. It’s not like I don’t know it isn’t safe for me. But maybe one day I’ll feel like it’s worth the risk to dine inside with friends. Maybe that’s an unhealthy impulse to take such a ridiculous risk, but so is drinking and eating fried foods and I’m allowed to make those choices without legislative interference. If I wear a mask and show a negative test maybe Bill De Blasio can see it in his heart to let me chose my own risks. But don’t for the love of America say that the unvaccinated can’t participate in society. I promise you will not like where that leads. A second class citizenship has never ended well.

Categories
Biohacking Emotional Work

Day 215 and Leisure

I’ve got a bad relationship with work. Since I was a teenager I’ve been compulsive about the idea of hard work. I don’t know how I got to have a problem with the Protestant Work Ethic but it seems likely I developed it long before I read Max Weber and found it’s comforting rationalizations about work’s inherent morality.

I’m fascinated by things like commodity aesthetics, the history of consumption, and theories of leisure & status. Partially because I got a kick out of supposing I was a better person than those wretched lazy types. I wasn’t so sophisticated to sneer “rentier” class as kid but I was well on my way to veneration of hard work and productive capital. An economics degree finished the job.

This was compounded by growing up in a family that worshipped the culture of Silicon Valley. The innovation of computers and the people that worked all hours to bring their creativity to the world were the most important people on the planet. They hadn’t quite crossed the cultural rubicon of power that the tech industry has now, but the power of making the future was hard work and heady stuff even before it captured the mainstream. I wanted to change the world like the people my father admired

There was a time when computing and automation raised questions of a new era of leisure. If we could move all of the work we’d previously done manually to automated systems perhaps humans could ascend to The Culture of Ian M Bank’s novels. In a distant future of abundance, sentient AIs run industry and production, so humanity can do, well, whatever it likes.

But we haven’t achieved a post scarcity world. If anything accumulating resources and showing you’ve done it by the rules of the meritocracy makes hard work even more crucial. You’ve got to play and win two games. You’ve got to make the money and show you’ve demonstrated the proper status while doing it. It seems like leisure is losing the battle quite soundly.

I’ve been pushing all year to get back to hard work. I’ve worked hard at my health. I’ve committed myself to biohacking. But really what if the obsession with working myself to the bone is killing me? I’ve been completely relaxed as I prepared for a medical procedure this week. I’ve never felt better. Which forced me to ask myself if maybe I better come to live leisure like the way I have loved work. It might be a much better life for me. The future sentient AIs might approve as well.