Tag: Illness

Categories
Chronic Disease Travel

Day 791 and Bathing Suits I’ve Never Worn

I’m on maybe my third or fourth trip to a warmer climate where I’ve brought a Norma Kamali bathing suit. I bought it on sale from Net-Porter as I’d always wanted one of her classic one pieces. I’ve never worn it.

For the casual reader, I have a chronic autoimmune disease called ankylosing spondylitis. It’s an inflammation condition that affects my spine and is aggravated by heat & humidity. Any temperature above above room temperature, give or take 72 depending on the humidity, starts to swell my tissues.

It’s well controlled with drugs but environmental factors can quickly spin up a bevy of symptoms including pain so debilitating I can’t walk. It’s one of the reasons we moved to Montana. I can live a semi-normal life so long as it’s cold. I spend most of my days laying flat in bed or in a zero gravity chair. My disability has become one of the super powers I use to propel my investing alpha. Because what else do you do with your time if you can’t leave bed except monitor financial indicators and chat with founders?

But back to the bathing suit. The black halter swimsuit has turned out to be entirely an aspirational garment. It’s still got the sanitary sticker for the crotch on it that says remove before wearing. I left it in and it’s become the not so subtle reminder that I may never enjoy a beach vacation again. It’s simply beyond my grasp unless I want to pay an obscenely high cost in pain and immobility.

I dutifully pack the Norma Kamali suit on each trip with a warmer climate. I’ve taken it to Miami, Texas, the Mediterranean and Mexico now. For this trip to Puerto Vallarta I packed a second bathing suit. It’s a striped bikini.

I had a fantasy that maybe I’d need a second swim suit as the other would need to dry if I swam every day. Oh what self deception we humans are capable of when it involves something we cannot have but want. I’ve never put the second suit on either. It also has the sanitary sticker still on it. It’s beginning to feel like they taunt me. Isn’t it funny that Julie still yearns to participate in the simple pleasures of life. “That dumb cunt” I imagine them murmuring as I pack.

My father loves tropical vacations. An adults only resort on a beach is his idea of a good time. And for his birthday, my brother and I very much wanted to give him what he wanted. Part of this is self protection as he often forgets to ask after other people’s preferences even if they are for something serious like a disease or disability. Better to avoid disappointment than know for sure. But also if we can give him what he wants why not make the sacrifice? It’s expensive for me energetically but I wanted to spend.

But it’s become clear I can’t make the sacrifices desired for the perfect fantasy family vacation. The bathing suit gets tossed in the suitcase with the knowledge that I can only manage one event outside each day. It’s usually a dinner or a chat.

Then I must sleep it off and work to recover. There is no space for pleasant relaxation on the beach in my body. The compressed Lycra slowly battling the expansion of my tissues as they swell overlapping with stuck lymphatic liquids would be torture. There is no joy to be found and no extra capacity to be eked out that might make the experience mimic the pleasure in a healthy body.

The fantasy is just that. A delusion I have about a life a lost and unlikely to be regained. The after effects of fertility treatments, IVF and living hard to outrun the vicissitudes of capitalism. I’ve accepted it as my lot in life. But it’s much harder to get it across to the rest of the world. And my fear that I’ll be left out and forgotten, that if I don’t fit myself into someone else’s life I’ll be abandoned. And so I rationalize that I’d be abandoned if I don’t at least try to bring the bathing suit. Even though going to the beach is a fantasy.

I hope my friends and family are able to meet me half way but I remain afraid that they don’t know how, or are unable to imagine what it’s like to live in my body. And it would be nice to be met halfway.

Categories
Biohacking Chronic Disease

Day 790 and Siesta

I have been crashing out of my day into a sleep cycle after lunch till about 4pm while I’m in Mexico. The stress of the situation along with the heat and humidity have me needing a lot of rest.

Last time I was in a hotter climate I’d find myself crashing out into naps if I did something like eat lunch outside. I think something similar happened here. There are no air conditioned common spaces in this hotel so if I want to spend time with someone I’m outside. Sure there is shade but that doesn’t knock down anything but brightness. The heat and humidity strike anyways.

I hate this phenomenon. I don’t find it helpful to be laid flat and exhausted by two or three hours outdoors, sitting, in the shade; but it’s absolutely draining. Even if I felt like I had a full charge, which I don’t particularly, I’d be down in the red quickly.

I woke up with someone asking about dinner plans which I had offered but in truth the most I want to do is get some dinner and go back to sleep. It’s just much too draining to be outside and there aren’t many restaurants in this town with air conditioning.

Categories
Biohacking Chronic Disease Travel

Day 789 and Types of Poverty

As you’ve probably seen articulated in thought leader tweet streams and thot-leader Medium posts, there are different kinds of millionaires. If you are young you are a time millionaire. If you are able bodied and healthy you are an energy millionaire.

I am in energy poverty. I carefully ration my attention & time and use lots of time-economic craft like asynchronous communication like emails and direct messages. Like a thrifty person with a budget I am always cutting the various coupons of time in my life to cobble together enough time to work full time so that no one can tell I’m energy poor.

It’s pretty common for folks to be in energy poverty. Maybe you are a parent. Maybe you are a care giver for an elderly parent. Maybe both. The most common is of course being disabled and requiring care. I am in that category.

I’ve turned my energy poverty into my super power. I am like Mr World monitoring feeds across the globe laying back and ingesting information & taking small minute actions to adjust my plans. I’ve adjust my career to fit this reality and find it to be an excellent fit for investing as it’s all about finding the alpha and acting on it.

I do telegraph that I’m in this situation. That my mind is sharp but my body is weak. I accept 2-3 events a week at maximum that require me to be up, about, in makeup and battle regalia (business dress) and the rest is dedicated to recovering.

I’ve never had hobbies that couldn’t be done from bed. The last time I participated in a sport was in my twenties before my latest flare. I’ve not had a social life independent from work for decades. It’s isolating and I remain perpetually afraid of losing people who aren’t in the same situation of energy poverty as I am.

Capacity can be drained further by negative conditions like heat, humidity or bright light. I am the type of disabled person that finds showering to be a huge drain so typically include those in my energy budgets as drains. Travel requires 24-48 hours of minimum recovery time which is why I tend only do month long stays places. You may have noticed I go cold places like Prague or Frankfurt and I live in Montana. That’s based on doctor recommendations.

Certain types of travel can’t be done without significant outlays of energy budget that will leave me in deficit for weeks. Beach vacations have long ago been lost but I can manage a tropical location so long as I stay entirely inside in an air conditioned room. Don’t worry laying on the beach isn’t fun for me so I’m not missing anything. Heat & salt water humidity is the fastest way for my body to begin an inflammation cycle.

I’m in Puerto Vallarta for my father’s birthday and the best I can manage is stay in my room all day and a dinner every other night. It’s a little confusing for folks who aren’t in energy poverty to fully grasp the concept but I feel no more frustrated with my situation than I would if I had financial poverty. Sometimes it’s just the situation and your budgets have hard limits. I’ll make an effort and spend 2 weeks of an energy on a long weekend for someone I love but it does cost me. Everything costs something.

Categories
Emotional Work

Day 772 and Spoiled

For as much as I write about pain, both emotional and physical, so much of my life is saturated with joy.

I was asked this week “when will you accept that you are happy” and I was thrilled to find myself blurting out in agreement “It’s true I am so happy.”

Crawling your way back from a life event that gave you ego death is no easy journey. You either accept that you are responsible for yourself or you don’t. And really bad shit happening to us like illness or divorce or death loss tend to be deeply clarifying.

I feel so spoiled by the life that my choices have given me. For all the mistakes I made, and they are numerous, I on balance made the right calls. I have never felt more loved in life than I do right now. I’ve got what I need and I felt brave enough to go after what I wanted.

I’m surrounded by people who care about me for me. And it’s such a luxurious feeling to be given the space to be yourself. It’s even better when being yourself is the thing that everyone loves.

A Friday night surf and turf feast with filet and crab.

I spent so much of my life fitting myself to my circumstances. And now here I am stretching out to become more of myself and I find myself rewarded for it. Last night my husband and a dear girlfriend made a magnificent surf and turf dinner. Just a restaurant quality meal made by my loved ones at my own home in Montana. And then we all watched one of my favorite movies Margin Call

Crab with lemon & parsley
Categories
Emotional Work Politics

Day 768 and Memory

I’ve not ever read Proust in its entirety, because what am I, an eternal being who exists outside of linear time? But, thanks to Wikipedia and university survey courses, I am familiar with its basic themes of memory and it’s frustrating insufficiency.

Anyways, when not pondering madeleines, I am often confronted by how resilient the mind is in protecting us from the horrors of the world. Memory is a very funny thing. As good a reason as any to maintain diaries or engage in hagiography, is that you’d be surprised at what you forget if you don’t write it down.

A doctor asked me to get a pelvic ultrasound. I surprised myself by saying absolutely not unless it’s an emergency life or death situation, I am not doing that. And she, in sincere surprise, asked me why not.

And, because I guess therapy works, I recalled a pelvic ultrasound from maybe 10-12 years ago. I’d been referred in to a specialist as there was concern about a uterine cyst. This doctor, a gentleman over 50 in the kindly white patrician archetype, who I did not know know, proceeds to tell me this won’t hurt a bit.

But it does hurt. I am screaming bloody murder. It hurts so much I cannot stop. He tells me he will call security unless I quiet down. I cannot and I am in tears hysterically trying to convey the pain to him. I pass out.

I had utterly suppressed the memory till today. It happened to coincide with my husband mentioning a think piece in New York Magazine about women who empathized with the Clare Danes character from Fleishman Is In Trouble. There is a profoundly violating scene around reproductive health and consent that culminates in dark emotional trauma.

And of course, because it’s happening to a striving insecure aspirant white bitch, it totally doesn’t count right? The internet is not sympathetic to whining Clare Danes types. Fucking Karens. It’s super cringe to consider where the system hurts you, because, you dumb bitch, you benefit more than anyone else except the men.

So I guess I am not surprised I had banished the experience of something bad happening to me at a doctors office, but you know, it was not so bad that I am allowed to complain about it. And that is how the patriarchy perpetuates itself. Shut up you are rich. Look at the skulls upon which your empire is built you witch.

What I’m saying is that maybe you need to remember who it is that benefits from you not remembering the pain. Who benefits from forgetting? And trust me they are very scared when you realize that you remember. Even the rich striving white bitches have scares from this system.

Categories
Chronic Disease Emotional Work

Day 767 and Abandonment

I called someone today with whom I have a standing appointment. They didn’t pick up at first. I called back a few minutes later when they didn’t return my call.

They picked up on the second call back. They didn’t seem entirely healthy. I found myself scared. My inner child dove immediately into a pattern of abandonment and distance as I tried to cancel and give them a way out. I blathered on about how it’s usual time and I hoped I wasn’t invading their privacy but if they were sick I could rescheduled as it was obviously no big deal.

“Julie” they said to me firmly but kindly. “Stop telling me how I am.”

I sat back on my heels at that. I hate it when people make assumptions about how I feel. Rather than listen, people will simply make assumptions about how I am and what I can or cannot do. If you hate feeling pitied then this will probably seem quite familiar to you.

It’s not uncommon for people to work through their own issues on illness, pain or disability when talking to me. While I have an invisible disability from a chronic disease called ankylosing spondylitis I do make it known that I have this diagnosis. I even treat it as a part of my edge at work. But it’s just a fact that I’m in various degrees of pain because I have swelling in my spine. It’s arthritis basically just inconveniently located.

But despite it being a public part of my identity, most people have no idea. I don’t look sick and I mostly don’t act like it in public as it’s kept under control with modern medicine. But I’ll have bad days. Or I’ll have to ask for an accommodation like sitting down.

And that’s when I learn a lot about a person’s relationship to illness. I’ll get pitied. I’ll get babied. I’ll get pep talks. I’ll get praised. I’ll get ignored. I’ll get written off. It’s never about me but entirely about the other person. It’s a little bit like seeing someone’s tell in poker. Most people have got one.

In the past I’ve let myself be invaded by these feelings from others. And it made me sad. I felt abandoned by all these people around me who couldn’t see me for me but instead saw their own feelings mirrored back to them. I felt invisible. I got treated like a cipher for disability or illness.

But underneath that little drama, an the actual person names Julie would be left alone to watch them play out their emotional theater. But I am done feeling abandoned by it. I don’t have to let anyone else tell me how I am. And it’s entirely up to others to decide if they can manage around me. I don’t need to make it my problem. I’ve got no need to abandon myself for them.

Categories
Emotional Work

Day 766 and Friends

The worst part of getting back on Instagram has been the number of people who said welcome back. Now you might say that sounds kinda nice. And for the extended universe of people with whom I casually socialize, yes it was nice. But for the people I considered to be friends it was fucking insulting.

I left Instagram before my health troubles but the overlap on the timing on the two isn’t wide. Its mostly concurrent. It’s hard to post the kind of aspirational lifestyle bullshit that the algorithm prioritizes from bed rest. There is a reason Twitter and long form blogging on WordPress are where I spend my social media time.

A significant portion of people in my bucket of friends simply disappeared from my life when I disappeared from their lives. When I stopped reaching out they stopped reaching out. My timing certainly wasn’t great as my health imploded around the time a lot of my peers got married and had children. Totally acceptable reasons to be busy.

But I also I learned the hard lesson that most people are so busy keeping themselves afloat they don’t give a fuck if you are dying. Because they are struggling too. Yet it’s hard not to have a sense of abandonment when people don’t reach out across any medium except what’s proximate and convenient for them.

I went to so much trouble putting myself and my entire journey online. I knew I was harder to reach as I couldn’t leave the glide let alone my own bed. So I reached out from the pit of my own despair and hoped someone would see my hands reaching. And a whole world of people did. I made a lot of new friends that way.

I’ve literally written hundreds of thousands of words about my journey. And all of it is conveniently tagged and linked and is searchable. If you wanted to read about pain management or biohacking or my medicine regiment it’s all here. I’ve even written an FAQ on how to reach me. I am one of the most accessible people you will ever reach. I made this this space because I knew I had to reach out lest I be abandoned.

So when a bunch of socially networked acquaintances said “welcome back” on Instagram, what I really heard was you were never my friends in the first place. And that felt sad in a way I wasn’t expecting. I’m sure was true that most people were not my friends. I always knew was true for the vast majority of people. But it was sad to learn it was true for people I’d felt close to in the past.

For the handful that were actually friends, it was a bit disappointing to see what distance, time and sickness has yielded for my expectations. I hadn’t heard from them in years but they still think we are friends. And I don’t know how to break to them that no actually we aren’t. I have come to expect more from people.

Categories
Emotional Work Medical

Day 762 and If It’s Not A Yes Then It’s A No

I was supposed to drive my husband to an appointment today. I’d put it on my calendar and was prepared to make sure it happened because that’s what wives do right? It was an easy and obvious yes. I didn’t think anything of it.

Around noon I noticed I was becoming intensely sound sensitive. I asked my husband if it felt really bright outside even though we had cloud cover. I felt a little bit nauseous but I’ve been taking some antibiotics so I dismissed the symptom.

It was only when some silverware clattered onto our wooden dining table I realized something was wrong. I full on screamed. I jumped and shrieked liked like a poisonous spider had just bit me. A massive overreaction to a noise that objectively was neither that loud or that threatening.

“Honey, is it possible you have a migraine?”

Alex Miller

Despite the litany of easy to diagnose symptoms, I had managed to ignore the obvious. I had a migraine. And from the looks of it a pretty severe one.

I’d woken up feeling amazing so I wanted to tackle the day with all the energy I had. But as it waned I got angry. If I’d bothered to look at the emotion I would have seen that underneath the steam of the anger was hurt. I felt betrayed by my body. I had a 95% recovery score on my Whoop. How dare it let me down? So I just ignored it.

The kicker to the story is I kept trying to ignore it. I took one Imitrax even though it seemed like a two Imitrax migraine. Alex asked me if I was sure I would be OK to still drive him this afternoon. I waffled a little bit and said I dunno I am sure it will be fine once the migraine medicine kicks in.

I don’t like to drive after taking Imitrax as it tends to make me a little sleepy. And I really wanted to help Alex by driving him. So I just took one and hoped for the best.

An hour later Alex came into the dark bedroom and said “honey you know if it’s not an immediate yes then it’s a no, right?”

Apparently I did not. I took another Imitrax and Alex found another ride. Hopefully I learned my lesson.

Categories
Biohacking

Day 742 and Careful Balance

I don’t think I’ll be getting my best writing out today. I’m plugging through my work while balancing out my personal chemistry against my obligations.

I am a bit scared to find myself balancing a delicate body chemistry in a foreign country. I don’t care much for taking a steroid like prednisone but when it’s a choice between hives and yellow weeping eyes or a modicum of comfort, you pick comfort.

It’s of course not without its side effects. Steroids make you feel great till they make you feel a bit crazy. They are very good at tamping down every reaction your body has which can ironically give you some autonomic issues. For me it can feel like I’m in fight or flight.

I left my Airbnb as the more I tapered the steroid dose the worse my symptoms got. I’m a little concerned about fighting Airbnb for a refund but better to lose a few hundred dollars than need steroids. I did find a very nice and crucially clean hotel that will do the trick for now.

Categories
Travel

Day 736 and Liminal Civilization

It must have been somewhere in the late nineties or early aughts that I first learned about the concept of liminal spaces. I’m fairly certain I got it from William Gibson. I’ve associated it with travel and the in-between spaces like corridors, escalators to nowhere and empty lounges. But it really means any in-between space that is not clearly claimed as one type of space or another. The rules of the space are unclear as it doesn’t have an identity.

After my most recent flight to Germany last night, I am wondering if manners and social contracts can be liminal too. Between the spaces where rules and social probity apply, and where we believe we can we can engage in bad behavior, is liminal civilization.

You are not quite bounded by the rules of your friends and countrymen nor are you fully bound by agreed upon civilizational manners when traveling. And nowhere is this truer than traveling when sick.

On the first leg of my flight a white twenty something gentleman sat next to me. He had an awful cough. He would sniffle, hack and then snurg up a ball of snot and swallow it down on repeat. I hadn’t put on a mask as the airport was mostly empty and so was the flight.

But I was next to a gentleman who was clearly in the grips of some type of viral infection. I put on a KN95 and didn’t remove it. He stated daggers at me. Like I was the rude one. But frankly I had no intention of getting his cold.

On my second flight I encountered a couple even further removed from decent manners and leaning full into liminal incivility. United had a huge fuck up on my flight which had them scrambling to reseat me after they gave away my seat when their own flight didn’t make it to Denver. I had bought another ticket on another flight and checked in at the lounge and has my husband call to confirm but alas I almost didn’t make it onto my flight. After pleading, I was reseated next to these two chumps.

I noticed the wife coughing first. A polite hem hem cough sniffle sniffle. She asked the flight attendant for a tissue. But her companion was far sicker. He coughed every 8-10 seconds while he was awake. A wracking hacking wet cough. And neither one of them had masks. A passenger with a baby asked if they would consider one. I said I had masks still in their wraps and NyQuil if it might help.

Whatever liminal edge of society in which they live, it is clearly one where the politics of masking has taken them so far beyond the bounds of basic decency, no one on the flight could convince them to cover up. Not even while the flight circulator was off during take-off, landing and taxi. These were visibly sick people. It wasn’t Covid paranoia. It was simply please keep your germs contained.

The gentleman thought it was so rude. Unless someone has cancer or another immune disease it was ridiculous for anyone to wear a mask. He explained has anti-bodies so it was clear he couldn’t get any of us sick. That’s how antibodies worked he explained. We stated incredulously. His argument was because he has had“it” before his immune system was fine. He couldn’t get us sick. In fact he wasn’t even sick really, just showing symptoms right? Needless to say this isn’t how infection works.

Furthermore, if he could get any of us sick from these coughing fits, it was because we were weak. I told him I took immune suppressants for a spinal condition and an infant was one seat away from him. The parents of the child and I both wanted to avoid a cold or flu if possible. He just laughed and said we were idiots.

I can’t really fathom living this far out of basic civilizational norms. It used to be impolite to cough in people’s faces. You were encouraged not to travel when ill. Other cultures introduced masks so the ill wouldn’t infect the rest of us. But since COVID’s disastrously overdone masking policies, we’ve now lost a basic tool of hygiene and human decency to keep those infected from harming others.

One reason I identify as a doomer is because of how often I see people like these three travelers completely ignore the needs, wants, desires and safety of others. It’s like they have their own bubble and fuck any of us with our needs and boundaries my desire to not get sick is just my opinion man. And it’s rude of me to ask.

I ended up masking till the air circulators came on. I slept without one. I hope the baby managed. If I were their parents I’d be furious some asshole decided his right to engage in society when sick was so much more important than theirs. Travel might be full of liminal cultural spaces where the rules of civilization no longer matter. Covid broke everyone’s brains.