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.

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 211 and Laughter

I miss being able to enjoy time out in the world. You know that feeling when you’ve spent the last two hours at your favorite bar with your friends just talking about nothing? The ease that you feel being with your community and enjoying being together? The casual camaraderie and easy laughter that comes from no expectations time together has been lost to many of us. I miss it.

It doesn’t seem like those days are coming back for some of us in the near future. If I give too much thought to the impact of things like the pandemic I think I just spike my cortisol. That’s a stress hormone. The stress of reactivity is killing all of us. Constant panic over floods, heatwaves, outbreaks and all their downstream effects is overwhelming our capacity to live. And yes, granted a more globalized war with a changing climate is capable of killing us. But we don’t have to let futility do us in early. We can find our way into solutions. But only if we stay alive to do it.

I’ve been coping with apocalyptic nihilism by shitposting on Twitter. Yes I realize this is a popular upper class pundit class past time. I’ve got some self awareness. But it’s also the only thing that mimics being out socializing with your friends. And I think that’s worth a lot. Shitposting is good for the soul.

You don’t have to shitpost, but if you cannot find a way to lower your stress response, as we say in crypto, ngmi. Everything may be going to hell but you aren’t there yet. You’ve got a life to live, people to love and who love you, and a chance to be happy.

Fuck cortisol. It’s not good for you. That’s some metabolic poisoning eating away at you and you chose to let it kill you. There is no reason to give yourself unnecessary stress. Some stress is good. It makes you resilient. But stuff you opt into? Fuck that noise it’s only going to make you sick.

And despite whatever family trauma circuit you may be playing out in your head, YOU DO NOT DESERVE THAT SHIT. No I’m seriously disease and suffering aren’t a moral good. Everything might be rough but you need to find a laugh. It might just save your life.

Categories
Chronic Disease Emotional Work

Day 209 and Synthesis

The only downside of spending a day intaking a significant body of knowledge is that it’s nearly is that it’s nearly impossible to do synthesis on it at the same time. I suppose this holds true for new emotions as well. Synthesis and understanding takes time.

I’ve been on a tear working through how I feel on a number of topics just as I’m trying to ingest a new body of knowledge. I’ve got some inklings of where I will net out on all of it but it’s still a gut feeling. Any capable articulation that will be external to myself will require some synthesis. I can’t tell you what I’m on about as I don’t yet know.

And while I’ve set personal deadlines for continuous daily writing I cannot simply apply willpower to everything. In other words, I can force myself to write today it’s not possible to force sense on it. The synthesis hasn’t arrived even if the force of daily habit has.

It’s not that I’m admitting defeat on willpower, I’m sure I’ll be able to push my understanding over time. But expecting it today is probably a lost cause. The spirit may be willing but my wetware is fragile.

Fragility is of course one of my life companions this year. I’ve had to face that life is cheap and it’s simply not possible to worry about everyone. I have to sacrifice some of my own goals in order to keep myself alive. I suppose it’s not always a choice, except in that I’ve chosen to live and not die. That’s a choice.

But how I fortify and defend myself against the realities of biology, cultural frustration and freedom is in the end up to me. The pandemic has brought this home in a particularly acute way. Forced choices on us all, but particularly the vulnerable.

But I suppose I’m done trying to protect myself and gain ground. It’s going to be one or the other. It is time to take some risks even knowing that it will harm me. I’m recalculating what kind of destabilizing my body can take in the face of societal exhaustion. But the emotional synthesis of knowing consequences and having made a choice in freedom isn’t done in a day.

Categories
Chronic Disease Politics

Day 199 and Vaccination

I’m not vaccinated against covid-19. It’s not a political stance. I’d very much like to be vaccinated and have it work. But I’m in the small category of folks for whom vaccinations do not produce antibodies. And to make matters worse, the only way I could “potentially” produce the antibodies in response to a vaccine is so destabilizing my doctors don’t want me to pursue it right now. So before being super smug about how this is a pandemic among the unvaccinated and it’s a “choice” for a small portion of us it isn’t.

I take immunosuppressants because my immune system has gotten some dumb ideas about attacking my body. I have had anaphylaxis a dozen times and allergies aren’t even my primary medical issue. That would be swelling in my spinal column. It was bad enough at one point that I couldn’t walk.

I’ve tried a lot over 2 years since it was diagnosed to keep it controlled. I was on chemotherapy drugs for about six months (I don’t recommend methotrexate at all and not just because it’s mustard gas). I was on high dose steroids long enough to develop a chemical dependency on them that required supervised titration down. Plus it made me fat as fuck and that annoyed me. Eventually my doctors settled into the suppressant category known as IL, or interleukin, inhibitors.

These drugs fucking rock and gave me my life back. Thanks to them I can live basically like a normal person with the exception that I need to be careful as I’m more susceptible to infection. We are quite literally suppressing my capacity to develop immune responses. You kinda need immune responses for vaccines to work.

Immunosuppressants and vaccines don’t really mix. I had to go off them to get a flu vaccine and I relapsed so badly my doctor was like well I guess it’s going to be masking for you in the future during flu season. About 5 months later the pandemic hit. Fucking hilarious.

If I go off my IL inhibitors eventually I’ll relapse. It’s possible I can make myself less prone to inflammatory responses but it might all be bullshit. I go to a stupid amount of trouble and money and engage in a lot of woo to make the rest of my health as strong as possible so I am not as prone to inflammatory responses. Maybe it will work. But quite frankly I’m not interested in finding out right at this moment if I can live without the drugs that saved my life.

Why does all this matter? Because you need to be off of immunosuppressants in order to have a vaccine work. And I’m not fucking going off my suppressants. Nor is it recommend except in stable cases.

It takes three weeks to dose them out of my system, three weeks off them before a vaccine of any sort would have a chance of generating an antibody response, and then another 3-6 weeks of injections get back to a baseline of stability. (their effects tend to be cumulative). And that’s because I would only be able to get one stick J&J as I happen to be allergic to the PEGs that stabilize mRNA vaccines, so I have to do one and done. But that’s an aside.

Basically I’m looking at 3 months of intensive inflammation that will cripple me just to get a vaccine. Because of a host of other complicating factors my primary caregiver physician and rheumatologist have recommended against me getting the jab. It will be hugely destabilizing to me (which is its own risk) and even if I get it, we just don’t know if I’ll produce enough antibodies while I’m on the suppressants. It could be for nothing.

It’s basically lose lose for me. It won’t work if I’m on the drugs and if I’m off the drugs I’ll be so sick it’s a crap shoot if I need to be hospitalized for going off them. Which ironically would put me at even higher risk of covid exposure. My doctors do not love this.

With the Delta variant on the rise I don’t know if it’s actually worth destabilizing me or if it’s a risk worth taking. It’s a crap shoot. I isolate. I mask. We didn’t want to fuck me up. It feels damned if I do and damned if I don’t. And I feel super alone in this status as everyone is acting like it’s a choice. And yes it is my body and my choice. But what choice would you make? My doctors aren’t sure either.

Categories
Chronic Disease Emotional Work

Day 196 and Exhaustion

I’m terrified of being tired. It’s the first sign of illness and a trigger of a cascade of traumas for me after fighting for two years to recover my health. The fear I feel when my energy flags is more than mere phobia. It’s the kind of gripping all consuming fear that stops all other emotions from surfacing. It’s a fear that stops joy and anger. It stops my my breathe and chokes out my chest if I pay it too much mind.

I’m already shedding unbidden tears probing a little at the edge of this fear. The fear that exhaustion will never lift sits in my body, scaring me into believing I’ll be trapped forever.

I’m more afraid of fatigue than I am of pain. Pain is complete and totalitarian yes. It limits your world sometimes in the extreme. But pain is not an enemy that cannot be overcome. When pain spikes or throbs I’m equipped with tools to combat it. It’s not that pain isn’t terrifying and all consuming. I’ve written about the challenges of chronic pain. How it robs you of your right mind. But it isn’t an enemy that extracts complete victory either.

I feel I can fight back. Light pain can be tossed out of my consciousness with mindfulness exercises. Even a slight self inflicted pinch can deflect pain. If it’s unbearable there are pharmaceuticals on hand. It’s not that I don’t find pain to be consuming, I do and it is, it’s that it doesn’t feel impossible to conquer. I have tools with varying degrees of efficacy that let me retain my agency with pain.

With exhaustion I have nothing. I fear exhaustion is an enemy I cannot best. There are no tricks for my mind that give me a boost of energy or remove the obstacle of feeling leaden. The tiredness is too complete to be overcome by mantras. There are no drugs for exhaustion. Stimulants can drag me out of bed but the crash afterwards makes it clear the effect was extracted under duress.

A doctor doesn’t mind giving opioids for a patient with spinal swelling but telling them you are tired doesn’t do much. What could they even give you? Caffeine? Aderall? Of course you are tired they say, your body is fighting inflammation. In this moment, I’m overcoming an infection and a poor reaction to anti-virals. An inability to crawl out of bed is a given. Nothing can be done. I just need to ride this out and hopefully it will lift.

But I’m afraid of the tiredness that has taken hold of me this past week. The fear that all of the work and money I’ve put into recovering my help might have been for nothing lingers. I logically know, and doctors confirm, that I’m simply fighting an infection and we had a slight complication with the medication. They say I’ll be feeling well a few days. They asked me to stay in bed for a few days. But I cannot shake the fear that it it’s permanent. The fear that I’ve lost all my progress is real. I just hope I can convince myself that feelings are not facts.

Categories
Chronic Disease Emotional Work

Day 195 and Waiting on Hand & Foot

I’m embarrassed that I need help with minor physical tasks. I’ve got an infection of the self sufficient Americana myth that seems to have taken root right in my very marrow. If you need something done you’d better do it yourself right?

When I was much sicker and undiagnosed two years ago, it felt easier to accept help because surely it must be temporary. There is no harm in needing help if you know you can pay it back tenfold? There is no harm in being unproductive for a time if you can pay it it back with interest.

But what will if can’t pay it back? What if I must rely on the kindness of others forever? Early on I struggled with little things like needing to use a wheelchair in the airport. I told myself stories like“I could walk if I just tried harder and accepted more pain” as I went through the concourse on the way to a hospital stay. I couldn’t pay back fellow travelers for slowing them down. And maybe no one minded that I was sparing myself pain for little inconvenience on their end. Perhaps I could accept small types of kindness.

But what if it’s not temporary? And what if it’s a significant amount of help! What if I do need help with basics for the rest of my life? Thanks to a recent trip my husband took I learned his running of the household increases my capacity by a full 30%. I could do everything just fine on my own but it would make my life much smaller. And it doesn’t seem to make his life any less enjoyable. On the contrary he shines when showing off his excellence in operational matters. It’s possible what I see as an undue burden is something he quite enjoys.

But I can’t quite convince myself it’s a good thing. The self audience myth has a deep hole on me. But if a third of my capacity disapates into tasks like cooking, cleaning, errands, and logistics but I’m enriched and energized by work like writing or working with the media then shouldn’t the choice be obvious?

And yet I still find myself embarrassed and angry about my limitations. . Why did it exhaust me so much to stand and wash lettuce? Or require so much rest to recover from a short run to the pharmacy. Those are small, albeit physical, tasks. My soul feels broken and my body a traitor with these small physical limits.

Whereas other pursuits can be done from bed. And even though it sometimes makes me sad it’s not always my choice, I don’t mind that my world is often limited to lying flat for hours on a mattress. I don’t resent it. In fact, it makes me rather happy. I’ve got the whole world available to me thanks to the internet. I can invest as easily in bed as from a fancy office. Twitter is just as good a connection to the networks of ideas and power as conferences or clubs. Better often.

The only part I resent is feeling like I’m a burden. Like I need to be waited on head and foot like some aristocrat or an ailing relative. Well not like an ailing relative. I am ailing. That part is the. But I can thrive in it with help. I just hope I’m not to embarrassed to take it.