Tag: Illness

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Chronic Disease

Day 183 and Pain

I forget the contours of pain when I’m not in its grip. Such is it’s overwhelming power that pain is the only thing you can focus on when you are in it, but it melts away from your consciousness like snow on a sunny day the moment it dissipates. Pain is both all encompassing and a ghost on whom it is impossible to keep a grasp.

It’s not an original thought I have here that pain is challenging to articulate. Virginia Woolf wrote On Being Ill

but let a sufferer try to describe a pain in his head to his doctor and language at once runs dry

I have an intellectual grasp on what is happening in my body. I can tell you what is happening in great detail. I take an immunosuppressant twice a month to keep the swelling in my upper thoracic spine down. These drugs makes me a bit more prone to infections as we need my immune system to be suppressed to prevent spinal swelling.

But when an infection takes hold my immune system fights back, the swelling in my spine comes back and the pain resurfaces. The pain will sneak up on me despite me being armed with all the knowledge about this cycle. It is still a surprise even knowing it is coming.

Yesterday I went to a doctor and got antibiotics. I came home and got into bed. And I got stuck. I couldn’t figure out what was happening to me. I’d been reduced to a consciousness unable to communicate with the outside word. I couldn’t even communicate to myself what steps needed to be taken next.

Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language […] Physical pain does not simply resist language but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries a human being makes before language is learned.

The Body in Pain: The Making and Unmaking of the World, Elaine Scarry

I go from having full intellectual capacity to understand my situation and discuss it with others to being stripped of language within hours. I couldn’t even tell myself what needed to happen next. I was stuck in bed. I tried to watch television but couldn’t focus. I tried to play mobile games and couldn’t focus. I was slipping into pain’s grip. It was only a reminder from someone who loves me that I had been lost from this plane of consciousness. “You are in pain Julie.”

I am resistant to taking pain medications. But it’s less about fear of their addictive power or potency. I am resistant to needing their help. When I’m not in pain I have the capacity to “tough it out.” I am able to hold onto the idea that my mind has some agency over my body. But as pain takes over my senses, I lose my agency and willpower. Pain steals the broader parameters of your personhood. I resist taking pain medications because I do not belief it is possible for me to leave my personhood so completely that I need their help.

But I do need their help. My focus narrows to the pinpoint of pain as it’s intensity blooms. And I don’t even notice it happening. I go from independent human to small body gripped in suffering without any awareness of how it happened.

Any other locus of power or human capacity that I normally retain shrinks to fit around the intensity of the pain. I am not even able to seek relief. That would suggest I retain the critical thinking to recognize what my physicians have prescribed I take and the capacity to enact it. I need to be reminded to take a Tramadol. I need to be coaxed into an OxyContin.

And then relief slowly slips over my mind and body. We think of opioids as drugs that shrink your eyes to pinpricks but I experience their relief more like a dilation of the soul. As the constrictive point of all encompassing focus that is pain is relieved my entire world opens back up.

I regain my mind, my willpower, my focus, and feeling in my limbs. That’s something they don’t tell you about pain. When you are in it you won’t feel anything else. The pleasure of a stretch or the relief of a leisurely walk don’t exist in the same reality as pain. You go from having thousands of senses to just one. You only sense pain.

If this all sounds unfamiliar to you I pray that it stays that way. But if it comes to pass that you are gripped by this monster know that it is ok to relieve your pain. There is no morality to this ghost that takes over your entire world. The only moral good that comes from it will be created by you. Pain will overcome you. You become stuck in it. And sometimes it is within your power to break free.

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Chronic Disease Emotional Work

Day 168 and Red Queen Running

On a typical week I spend about 8 hours on health care appointments. This doesn’t include basic human maintenance like good nutrition, exercise and sleep. These are straight up hours I spend with health practitioners. It’s a lot.

I feel a little bad complaining about it as most people don’t have the opportunity to pursue some of the things that hold me together. The American medical system is built for those with spare money and time. But I’m envious of people who don’t spend all their spare time and money on healthcare. I cannot even imagine what I would get done if I was as healthy as the average person.

Regular people have the luxury of emotional dramas, personal hobbies and families. I on the other hand get to go to the doctor. I don’t get to stay up all night obsessing over men. I don’t have the capacity to raise children or parent. I don’t get to train for marathons. I’ve written before about the envy I feel for the lives of the fully able.

But mostly I resent that I have to spend so much time on my health just to maintain my progress. I feel like I’m trapped by the Red Queen in like Alice in Through the Looking Glass.

“Now, here, you see, it takes all the running you can do, to keep in the same place.”

Lewis Carroll

Some might argue that having a disadvantage like this focuses you. I’ve become quite a charmer over the years to offset my physical disabilities. I do more in less time because I have to in order to compete. I’ve found ways to thrive in late stage capitalism. It’s entirely possible I’m not standing still.

There is a whole theory of evolutionary biology that these pressures just to maintain your place in the world are adaptive. In fact, it is called Red Queen theory. I guess just needing to work your ass off just to stand still is pretty normal.

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Biohacking Chronic Disease

Day 162 and Reactivity

I’m sensitive to everything. Physically I mean. I’m surprisingly tolerant of emotional volatility, which means I’m well suited to entrepreneurial nonsense and financial chaos. Physically, on the other hand, I’m a hot house flower. Orchids have a wider band of tolerance than I do. If you don’t feed, water and rest me on a precise schedule I will cascade from blooming to dead in a few hours. Only a slight exaggeration.

I’ve got endless examples I can share. I can go from zero strain & a low heart rate when working out at 65 degrees to vascular distress and heart rate spikes at 75 degrees. When I was younger I would get drunk from one drink and now I can’t even have a sip of wine without turning beat red. If a drug has rare side effects I’m virtually guaranteed to get it. My doctors are pretty familiar with this now and like to make jokes about it. “Well .001 of patients experience thinning hair so you will probably go bald!”

On a day to day basis I hate this because it means I have a lot less flexibility to fuck around. I will find out. I need to keep strong rhythms and routines. And I can often spot when even a planned and positive therapy has negative consequences almost immediately.

For instance, I take an immune suppressing biologic every two weeks to keep my immune system from getting too worked up and causing inflammation. I’ve got ankylosing spondylitis which means the swelling shows up in my spine. It’s good to keep this suppressed. This drug lets me walk and live normally which is awesome! Yay! But on the day of my shot and about 24 hours after I feel like shit. I can literally feel my immune system getting shut down in real time. I’m sniffly, tired and slow today. While this is good in the long run, we want to keep my immune system down, I’m grumpy as fuck that I feel the effects of this drug.

The upside to this reactivity is even modest changes show up in my tracking tools. I can leverage many subtle therapies, diagnostics, treatments and supplements to significant effect. It’s probably a factor in my affection for biohacking. I can see results quickly. The feedback loops tend to be short and noticeable for me, which thanks to tracking many variables over a long time span, means I can isolate effects within relatively short order. So while I’m a pain in the ass patient I’m also a pretty emotionally satisfying one. If you make a correct diagnosis on me you will find out pretty fast. That’s so satisfying.

The irony of this short feedback loop reactivity is that I mostly work on longer term horizons and on extremely volatile things. Maybe it’s because I get the benefits of compounding because I have built up so many positive habits? I don’t get worked up by any individual data point because I’m used to seeing extreme reactions in myself. No big deal. I don’t mind chaos at all because I don’t have much chaos in my daily life because I’m constantly managing my own biology. Maybe I’m actually perfectly suited for my professional life now!

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Chronic Disease Emotional Work

Day 157 Brushing Your Teeth

I feel like I need a break from having daily obligations for a day or two (it was a big week) but I’m also a creator of routines and rhythm. When you’ve got a chronic disease you don’t get to skip stuff like your medication or healthy habits without some consequences.

One reason I don’t find myself burdened by writing something long form everyday is that I see it as a habit like taking vitamins, taking a daily walk or brushing my teeth. It’s just something you do.

But I can chose how much time I put into writing or how long I walk (though it seems prudent to let the electric toothbrush run it’s full 2 minute cycle). So I’m reminding myself today that it’s alright to keep today light. If you want something good to read I recommend the Thursday Style Problem.

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Chronic Disease

Day 156 and Social Accommodations

One-on-one synchronous communication requires energy and commitment. If you have plenty of energy and few health problems maybe this isn’t intuitively obvious to you why it’s tiring for me. To understand I highly recommend the Spoonie theory of living with chronic disease. A Lupus patient Christine Miserando explains to a friend using “spoons” as a prop/metaphor.

So, she laid out a handful of spoons on the table and explained that the spoons symbolize all of a patient’s daily energy reserves. Every activity, no matter how thoughtless and automatic, depletes from the energy supply. Getting out of bed, showering, getting dressed, eating, and any number of mundane tasks threaten to deplete energy at any given time. When you run out of spoons, you can choose to borrow against the spoons of a future date, but there are consequences. When you deplete your spoons, you are bedridden. Unable to manage the simple activities of life.

I work with a limited set of “spoons” each day. If I manage my energy budget well you would never guess I’m any different than you. But I optimize my day around accommodating my firm energy budget realities. I think of it as a wheelchair or a crutch. It’s a tool that helps me extend my capacity. I can do more with less energy and thus I need fewer spoons.

One area that makes a huge difference is digital asynchronous communication. Written documents or presentations, text messages, email, Slacks, heck even voice memos are all great ways to reach me as long as you don’t expect an immediate response. Asynchronous communication means respond when I have the energy. I rarely feel overwhelmed by those as there isn’t a need to respond right that moment. I don’t have to use a spoon to get you a response. If you need FaceTime or a phone conversation then I have to work around your preferences (which might not be strictly necessary for the information it’s just what you happen to link) and then you are also asking me to prioritize your preferences over my limited energy banks. Which can feel disrespectful if you don’t suffer from strict energy budgets. You are asking me to take a double hit. Accommodating me makes me more likely to budget more energy and time on you in the future if you respect my energy now.

This means you may need to reach out more. If you expect a synchronous back and forth you may end up waiting on me. Please don’t wait on me to reach out and have energy & free time at the same time as you. You will wait a long time! Reach out and we will work it out asynchronous style.

This is why I love social media. It is easy way to connect people to what I am doing on my own tike frame I have extremely limited energy and capacity to express that one on one. If I had to I’d end up limiting my entire world to like 3 people. My energy for one to one communication is limited. As someone who is disabled and chronically ill, I feel lucky that I have access to technology that allows me to expand my capacity to connect and communicate. If I didn’t have these tools my world would be severely limited as each conversation and interaction I have takes significant resources.


Like a myriad of writers who have been sick before me (Walker Percy, Virginia Wolf to name a few) I use this tool to extend my life and influence beyond the bed in which I spend 12 hours a day. So please understand I cannot always communicate in real time or in person for everyone. It’s the highest energy usage thing I do. Let me use technology to expand my world beyond my bed. We will both get a lot more out of it and you will find that thanks to technology I can can as much done as you.

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Biohacking Chronic Disease

Day 138 and Positive Reinforcement

All my health apps think I’m dying. Which like no duh guys I’m an avid biohacker because I’ve got some health challenges. This is a persistent issue across most tracker apps but a compelling example is the Gyroscope app which relies on a health score system. Because I have a high resting heart rate due to chronic pain from ankylosing spondylitis I get served persistent alerts like the one below. “Warning you are more likely to get sick right now”

Of course, the issue is if you are always getting flashing red lights your inclination to do anything goes down. It’s the “boy who cried Wolf” problem. If I’m always being told I’m more likely to be sick now why would I ever modify my behavior to try and improve things? It’s always “now” so there is no point in doing anything to make a better future.

We see this problem across so many areas where our future selves would benefit from our present selves being more responsible, from personal finance to weight loss. If everything sucks now and nothing we do seems like it will improve the situation by a meaningful margin why bother?

App designers need to take note of this tendency of despair based on the gap between short behavior loops and long term goals. Nudging us towards improvements required positive reinforcement that rewards us for who we are now even as it seeks to compound the positive effects for significant change over time for a future outcome. If you’ve got 50lbs to lose you need to be rewarded for each small decision that helps you lose your unwanted weight, not be told everyday by an app that you are at risk of disease.

Overwhelming human minds with the enormity of a goal or a gap between our current stare and our long term goals doesn’t lead to positive short term behavior. If it did we would have solved climate change and racism by now. If we think a problem is within our power to solve we will try but fuck it why bother if it’s a parade of impossible scenarios.

If you are designing systems for people that need to make changes keep in mind this gap. You will see better results and happier humans if you lay off the doom and gloom. Positive reinforcement works.

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Aesthetics Chronic Disease Chronicle

Day 122 and Soul Delay

There is a line in William Gibson’s Pattern Recognition that has stuck with me for years. The context isn’t all that crucial except to know the hero has just taken a long flight.

She knows, now, absolutely, hearing the white noise that is London, that Damien’s theory of jet lag is correct: that her mortal soul is leagues behind her, being reeled in on some ghostly umbilical down the vanished wake of the plane that brought her here, hundreds of thousands of feet above the Atlantic. Souls can’t move that quickly, and are left behind, and must be awaited, upon arrival, like lost luggage.

Sadly I am not jet lagged, as that would imply international travel which is a context I doubt I’ll have for at least a few more months. But I’m finding soul delay can happen even without jet lag. The separation between one’s body and one’s soul is a rich emotional issue. For the past week or two I feel like I’ve been reeling from a gap between my soul and my body. It came on suddenly, despite all the disparate causes been easy to see coming and not remotely surprising.

The dawning realization that I may not be stuck forever with a chronic illness hasn’t been the unmitigated joy I anticipated. In fact, it’s been fairly miserable realizing that the convenient excuse to keep me from workaholism won’t be an available crutch forever. I’m assessing all the things I take for granted in my life and their myriad benefits and it’s not pretty. It turns out even the most joyful possible goal attainments come with a host of introspection.

And that generally means you can’t lie to yourself. It actually feels a little bit like attaining wealth overnight. All those excuses you used to have about how you’d just pursue the life of your dreams if not for financial limitations? Some of them turn out to be lies you’ve been telling yourself for years. And then how do you feel? It turns out much of your circumstances were self imposed.

Which isn’t to say that I’m finding out I need to make drastic life changes and that I’ve been living a lie. That would actually be easy! It’s more that the sum of dozens of self limiting beliefs need to be assessed, turned over for utility, and discarded or repurposed. Why was I a founder? Why am I married? Why do I pursue attention? All of these are little bits of honesty that are giving me soul delay. Because finding out what I actually want, without the benefit of a circumstance preventing me from achieving my desires, is going to require reconciliation between my soul and my reality.

So right now I feel a kind of emotional jet lag. After intensive work and a significant amount of willpower I am getting what I wanted. I’m getting my health back. But I’m still reeling in my soul from the journey. The cortisol spiked adrenaline of the effort is wearing off. I need to recover from my recovery. My soul needs to reel itself in. But I don’t know when it’s arriving at baggage claim. And I’m so very tired from the effort. So even if I have arrived it doesn’t feel like I thought it would. I hope I can be patient with myself while I wait. It’s been two years so I figure what is another few months?

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Chronic Disease Internet Culture

Day 121 and Health Data

One of the biggest blockers to taking up a more quantified approach to personal health is your ability to get good data. Why? It’s not because it’s hard to capture or track key metrics. Nope, one of the biggest blockers is the consistent portability of your personal health data. This frustrates me as biohacking has been key to regaining my health but it’s a challenge to keep my data sets in order.

No one uses one piece of hardware or software forever. Preferences evolve. Doctors want new metrics. A new device comes on the market. You decide one metric isn’t worth tracking anyone. Or maybe your Fitbit just shits the bed and you decide to buy a new type of step tracker. Whatever the reason our stack changes over time. And yet data interoperability seems like a pipe dream. Devices and applications act is if you will be with them forever. Your data gets parsed in their specific presentations with little indication that it can be exported for later use in another table or application.

If you are considering doing work in health data please take into consideration that even if you build the next billion dollars company with a decade of your leadership, it’s possible your customers will won’t make it for the whole ride. Please don’t tie them into your best case scenario. There are real people on the other end of your metrics and they are making important real world decisions with the health data that is making you money. Respect that we want you to make money for providing us with value but there may be a legitimate reason we need to make a change. We should have the ability to take our data and have it be usable somewhere else. So please don’t optimize for “sticky” user behavior that keeps us coming back. Give us value without having to sacrifice our freedom. If you can’t do that then maybe you shouldn’t be in the health business.

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Biohacking Chronic Disease Chronicle

Day 120 and Naps

I’ve always been prone to energy dips in the afternoon. I wake up immediately ready for the day but after lunch and another of work or activity and I’m heading off an energy cliff. If I allow myself a burst of sleep I’ll be back and feeling as energetic as I was in the morning right as my body insists on an energy dip as it is dinner time. Two hours later and it’s basically bedtime just as my second energy burst is coming on. Not great timing if I’m honest.

I used to force myself through afternoon lulls with caffeine or attempting to slot in a workout to push for energy. Neither really worked well for my rhythm or energy. Once I went on medical sabbatical I was able to test out the afternoon nap. The Mayo Clinic agrees it has proven benefits for cortisol levels and stress. WebMD has a long roundup of benefits like lowered blood pressure. The only thing you have to look out for is if you are an insomniac then late afternoon naps might push your bedtime back.

This is a concern for me as I regularly get too worked up to fall asleep easily. I practice all the sleep hygiene best-of hits like blue light blocking, dark cool rooms aand magnesium and still I find myself longing to find my phone and doomscroll Twitter. My biohacking efforts on the most restful night of sleep are easily derailed by the need to dunk tweet or reply guy.

I long to find the ideal balance of nighttime rest and day time napping to make my ideal circadian rhythm shine. I wonder if I should be one of those types that breaks their sleep pattern into two blocks. Biophasic or segmented sleep always seemed like a cool hack for maximizing energy. I just don’t know if it would accidentally break me.

As much as I want to go on some sort of sleep optimizing spree my gut tells me I just need the sleep that I need. I probably need the eight hours at night along with an hour during the day. It’s just fine that I sleep more. It’s literally the best thing anyone can do for their health.

The tricky workaholic part of my brain fantasizes about having an even block of productive work that shifts my bedtime so I have a six hour evening block to match my six hour morning block. I get indignant that after my nap in the afternoon instead of rising into a second workday my energy is consumed with practicality like dinner and sleep hygiene routines. I should not push my body for my workaholic fantasies but the bio hacker in me really wants to try.

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Chronic Disease Chronicle

Day 117 and Drained

I feel like my mind hasn’t caught up to my body this week. Usually it’s my body that isn’t caught up to my mind. But I’ve been fighting so hard to get physically healthy that I don’t think I fully considered what it would mean to achieve it.

I’m exhausted as the reality of a change is hitting me all at once. I’ve been having a roller coaster of emotions trying to figure out how I feel. Some of it is a resistance to change. But I think some of it is simply that even positive changes require emotional adjustments. Adjusting to a new self requires a lot of energy.

A part of me feels like I’m fighting some boss that if I can just defeat will let me get to the next level in the game of my life. And I’ve used up all lives trying to get through it. I’m pretty sure I’ve figured out how to make it happen but I’ve been at it for so long I can barely see straight. But who wants to take a break when you are so close to leveling up?

I really don’t have it in me to say much more today. But I’m pretty sure I’ll have more once I can just get through it.