Tag: Health

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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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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 Internet Culture

Day 118 and Games

I wasn’t a gamer as a kid but as an adult I’ve come to love gaming. The joy of accomplishments, the camaraderie of guild members, and the fantasy of the worlds are powerful magic. I’ve met dear friends that I love every much as anyone IRL.

Gaming has significant social benefits apparently. Which anyone who spends a lot of time in Discords and guild chats can vouch for. My gaming friends are some of my closest friends. I know more about their lives than I sometimes do about coworkers or casual acquaintances.

In findings published in 2017, the team found that MMO engagement correlated to a stronger sense of social identity, or how people self-identify based on their affiliation to groups. That social identity then corresponded with higher self-esteem and more social competence and lower levels of loneliness, the researchers found.

But it doesn’t have to be immersive or social to be worth my time. I like ditzy mobile games too. Silly games that don’t take up too much cognitive overhead can be the most relaxing. It’s fun to move around cartoon bubbles or dress up a Kardashian. And sure enough that has benefits too. Improved problem solving skills, improved cognition and and eases pain. Guess that might be why I like it.

“It’s common to try to distract ourselves from pain by paying attention to something else or focusing on other body mechanisms, but that’s not the only reason why games are a good post-injury prescription. Playing can actually produce an analgesic (pain-killing) response in our higher cortical systems. The more immersive, the better—which is why pending virtual reality systems may one day be as prevalent in hospitals as hand sanitizer.” Mental Floss

The truth is even with all the benefits I think play is important. Time to do nothing but engage in childlike enjoyment makes life better. I just want to do something fun and relaxing and and not worry about anything while I do it.

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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.

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Chronic Disease Chronicle

Day 115 and Physical Rehabilitation

As part of my commitment to quantified self and biohacking I have a physical rehabilitation protocol I cobbled together. Two years ago at the start of my autoimmune my journey I couldn’t walk easily. The ankylosing spondylitis manifested in my upper spine meaning I would struggle to get from my bed to the bathroom. I had to shower using a stool. I walked with a cane. This was not great for my cardiovascular health or my muscle tone. I was in this state for well over a year.

As the inflammation has become controlled in the past six months, I’ve been faced with a long rehabilitation. How do you build back stamina when even minor exertion was beyond one’s capabilities? As it turns out you do it one step at a time.

I’ve kept it simple. I get up out of bed every hour and take 250 steps. You’d be surprised how much a commitment to small consistent movements builds on itself. Once I got used to regular “get up” movements and pacing the room, I focused on adding small increments. Add in a hundred more steps at a time and now I’m comfortable hiking for an hour a day on flat or slight inclines. Thanks to a totally inconsistent stretching routines (a mix of Pilates and Alexander Technique) my muscles have retained mobility so that adding in more mileage has always felt comfortable.

I don’t have a program that is specific to rehabilitation though I suspect I should. I just committed to adding 5% a week more steps till I was able to walk 3 miles at a time or about 7,000 a day steps with a small amount of activity every hour. I suspect the regular activity each hour helps more than the steady state work but both add up to fitness gains. I have been adding in weight lifting and found that my strength is reasonably good. The real issue is that if I go to my full strength capacity I find myself struggling afterwards as healing and natural inflammatory processes are still a challenge for me. It’s as if the actual fitness isn’t the issue but rather my capacity for recovery.

Today I was able to successfully hike the NCAR trailhead in South Boulder. It’s a moderate intensity hike with some scramble and a gain of about 750 feet over a 3 mile circuit. What surprised me the most was that I didn’t have any perceptual issues with fitness. The exertion felt fine. The challenge was the occasional spike of pain. I wasn’t entirely sure if discomfort was a function of not being capable of managing the trail or simply that I’m still prone to system cascades. I can’t explain it any better than that. The trail was muddy and I lost my footing sending me into a fight or flight cycle that I needed to let pass.

Now that I’ve reached a point where normal activity is possible I need to find the next step in my cumulative rehabilitation program. The area where I can add 5% gains each week. If anyone has suggestions I’m open to it!

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Chronic Disease Chronicle Startups

Day 114 and Resistance to Change

Crash landing my life into a medical sabbatical really fucked up my headspace. Around two years ago I was beginning to realize I didn’t have a choice in accepting that I was sick. My identity as an always on, gets things done, reliable, entrepreneur got replaced by an entirely new self conception as “ill person” in a matter of six months. In August of 2019 I disclosed that I was officially sick. I sold my company and was going on leave.

It wasn’t a pretty adjustment. And I’m probably lying to myself when I say it took months to accept. I hated the new me. I felt weak and out of control. Willpower and muscling through did very little to help an autoimmune disease. If anything that mentality of “working on the problem” made it worse as I needed to rest and let my doctors do the work. I was resistant to change.

I think I’m going through a similar transition now as I did in 2019. I began seeing a new doctor in Colorado in October of 2020 and I made more progress in six months than I did in the previous two years. I’m beginning to face a new identity change as it becomes clear that I won’t be “sick” forever. While autoimmune diseases aren’t like an infection, there is no “cured,” it is beginning to look like I will be healthy enough to live normally. You won’t be able to tell I’ve got anything wrong with me soon.

And I have to admit to myself it’s a mindfuck. The emotional and psychological work I had to do to accept losing my entire identity is happening all over again. Who the hell am I if I’m not sick?

You see for the past two years I got used to explaining to people I was a sick person. I was disabled. I needed accommodations. I couldn’t work in ways I felt I would be reliable. I came accept my identity as someone with physical limits. And I slowly figured out ways to communicate that new reality others who has previously seen me as this abled person.

I guess you could say I was at peace with my situation. The pandemic helped. I know it probably sucked for you but I really enjoyed having a year of my recovery coincide with others having to live the way I did. I know it’s selfish but it helped! I felt less alone.

And yet just as I’m finally feeling like I really got a handle on my new identity it’s not my reality anymore. I’m not going to be a sick person. And while I thought I’d be overjoyed it turns out it’s a little more complex emotionally.

Let’s try a comparison. Imagine you broke your arm. You keep it in a brace and you can’t use it while it’s healing. And then the cast comes off and you are unsure if you can go back to using your arm like you did. You used to move your arm without thinking. You don’t worry about applying pressuring or picking things up before the break. But after it’s scary. You don’t want to set yourself back. You are scared to lift things and scared to apply pressure. I am in that place with myself. I know that the break is healing. The cast is off. But the muscles are atrophied and I’m not sure I trust that everything is knit back together. But the reality is that soon I’ll have the all clear.

But who I am now? I’m not the entrepreneur I once was. That workaholic Julie won’t be coming back. But the disabled sick Julie won’t be with me forever either. And I’m a little scared about it what’s coming. Who am I going to be next?

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Chronic Disease Chronicle

Day 109 and Medical Outliers

Watching the frenzy around vaccines has been an emotional experience for me. A lot of people are making assumptions about the private medical decisions of others. I’ve been watching friends “believe science” and discuss bonding over their jabs. And I’ve been watching friends caution that perhaps we should keep an eye on the long term effects of novel therapies and weigh the costs. The most frustrating aspect has been that everyone assumes that I am on their side. That I’m normal enough to have an opinion that is based on political affiliations and not one informed by my status as a medical outlier.

I guarantee you that my feelings on medical procedures are more complex and nuanced than any zeitgeist narrative thanks to being a medical outlier. As I’ve watched worried well and vaccine skeptics look to bond with me (especially those concerned about side effects or long term impacts) I find myself frustrated. It’s not that likely your concerns are mine. The chances that you as a healthy person with maybe a few issues are also a medical outlier in the way I am is unlikely. Like trust me you’d know it. You’d know if you were actually unusual. It doesn’t fucking sneak up on you.

I’m literally outlier. By definition I’m at the fringes. It’s not a surprise when shit goes wrong as weird medical shit tends to let you know. It’s not a vague concern about something that might happen. I’ve got blood work and specialists. I watch my markers like a hawk to see how much we much we push my immune system quarter by quarter.

I want to discuss my decisions for my own safety and what I’ll be doing but it just doesn’t seem, well ironically, safe. Too many people are too polarized and frankly paranoid. Most of you don’t have to worry about the stuff I worry about. It’s just not that likely you are going to experience the kind of autoimmune system cascades that are a real risk for someone like me. It’s a one in a million kind of thing. So equally it’s possible what is very safe for those millions is a risk for me. I wish it weren’t.

So I would ask folks to please take some care with privacy and respect when discussing medical conditions with anyone. Especially if you know they have something complex or long term. Other people’s assumptions about what I can or cannot do makes me feel alone and sad. Don’t let your politics or your fears invade the space of others who may not be so lucky as to have the same choices and opportunities. I promise we really appreciate the empathy and kindness.

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Chronic Disease Chronicle

Day 106 and Perceptual Drift

I often find it easier to talk about the darker parts of my journey from chronic disease once I’m already through the worst of it. If you are hearing about my long dark night of the soul it’s probably because I can see dawn breaking.

Maybe it’s because it’s hard to discuss the challenges when you are in the thick of them. Having any amount of perspective when life is at its worst is a skill reserved for religious scholars and internet advice gurus. The rest of us just try for hindsight being 20-20 at best. I admire the stoic philosopher types but I’m generally just happy to be able to survive rough days with a minimum of pain and angst.

It’s likely this tension between a better current reality and the heaviness of past challenges that made me so confused by the reaction when I posted about the envy I felt towards people who live healthy normal lives. A number of people checked in on me worried or concerned about how I was doing. I didn’t get it. I had just been discussing how well I’d been doing so why was everyone offering to pray me me?

I’d come to terms with some of the sadness and anger I’d felt during the worst days of my illness because I was doing well. I’d been posting about how excited I was that I felt great, had clean bloodwork, and was seeing better days. It was because I was doing so well I decided it was best to ruminate on the challenges I’d experienced. I was on the other side of it. Feeling well and energized meant I had the capacity to explore the dark places. When I’m actually in a dark places usually all I can do is survive the experience.

But I get that others didn’t see that now. They saw darkness and sadness and reach out to me with kindness. The love and support from people close to me and the messages and prayers from my internet friends all added up to me feeling like the good times will just keep getting better. If you are reading this I encourage you to share your journey. You just might get back the same love that I got. People are great that way.

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Chronic Disease Chronicle

Day 104 and Having HP

When you live with a chronic illness a certain element of unpredictability is always there. As I’m settle into having a case that is under control (what I wouldn’t give for a term like remission but autoimmune doesn’t get terms like that) I find my body is more reliable. More days are good days and bad days can be papered over with drugs. And as an autoimmune case stabilizes you can take more risks to push through bad days without promoting a systems cascade. That means you can take more risks on a good day and have a positive outcome.

Today was a good day. It might sound strange but this was the first noticeable day where I worked a straight workday in over 18 months. I started off before 9am and didn’t wrap until 5:30. I barely broke for lunch. It’s not that I haven’t worked during my sabbatical and recovery months, but typically I try to keep a pattern of rest between work blocks. I doubt anyone feels great at 4pm but in particular I notice all my symptoms are at their worst in the later afternoon. Frankly people are onto something with siestas.

I’m honestly thrilled to have had an extended good day. I didn’t notice any major pain spikes at any point in the day. I can usually tell if I overdo it and need to rest. Sometimes it’s just a pain spike that forces me to lay down. That wasn’t the case today and even more excitingly I don’t think I dipped into any reserves to have a full day. I suspect I’ll feel fine tomorrow.

It’s honestly not that different from using up too much HP or lives in a video game. Sometimes you gotta do it but it’s expensive. And sometimes you go up against a boss and are like oh “huh” guess I’m stronger than I thought. Today I discovered I’ve actually built back up my HP. And I’ve still got all that old XP from years of grinding. It felt like I had misjudged the difficulty of a level I hadn’t played in ages. I was so sure I was going to get beat. But I sailed right though. And I’ve still got plenty of lives for whatever level I’m playing through tomorrow.

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Chronic Disease Chronicle

Day 93 and Distrust

I’m feeling pretty good these days. I’ve written about my progress and my biohacking. But one area I’m not improving in is consistency. Despite meticulous record keeping and a routine I maintain assiduously, it’s almost impossible to predict when I’ll have a bad day. They appear at random!

Most days were bad days the past two or three years. The good days really stood out. I noticed them because they were rare. Now I’ve got a pretty consistent pattern of several days on and one day off. Sometimes I’ll even wrack up almost a week of good days. I used to have bad months and bad weeks. Now it’s rare for me to have more than three bad days in a row.

But I’m still regularly caught off guard by bad days. Out of the blue for no discernible reason I’m in pain, exhausted and struggling with basic function. The pain is the first symptom. Radiating out from my upper spine it pins me flat on my back in bed. About all I can manage in that state of pain is my phone over my face and the light gestures required to work a touch screen. But I don’t know why I have these bad days.

I can do everything “right” and be feeling terrific and then I’m fucked up all over again on a dime. Now I’ve got a small pharmacy I can toss at my symptoms now so I can often medicate myself back to a tolerable baseline.

The issue is what should I do once I’ve recovered? Do I rest? Build up my strength? I used to practice “active resting” where I would engage in restorative practices even when I felt well. The idea was I was building up a reserve of energy for the next crash. But was that the wrong approach?

I’m beginning to think I should take advantage of every last moment of health I have. If I feel well then screw the “active resting” I’m going to use every good minute I’ve got to pursue my goals. Active resting doesn’t seem to have any benefits I can reliably track. And it seems no more likely I’ll have a good day if I have rested then it is I will have a bad day. At best it’s marginally related to a poor night sleep but once I’ve woken up to face the day the day is cast there isn’t it?

I hate that I’m unreliable. I hate that I can’t track triggers. Doctors have seemed largely sanguine on the issue. Some days will just be bad. Sometimes your immune response will be off. But I’m feel lost and angry that I don’t know how I can live life without some degree of predictability. The only thing I can rely on is that on good days I feel good. So maybe I should just pack shit in on those days. No restorative crap. Just go hard at my goals. I’m not sure this is a good plan. It’s probably a bad one. It could just be my addiction to work talking now that my mind knows my body can handle my hard living again. At least for a few days. But if hard living doesn’t produce predictable crashes then what should my takeaway be? Fuck if I know.