Tag: Stamina

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Chronic Disease Community

Day 571 and Isolation

The move to Montana is mere days away. Alex has started to feel a sense of loss. He’s been able to build a nice community here in Boulder in just two years thanks to his deeply weird (joking) habit of having hobbies. I on the other hand, have never felt more isolated from my hometown. I cannot wait to leave.

Some of this feeling of alienation is simply transient. It is my natural dislike of summer coming to a head because of the physical toll extreme heat takes on my spinal inflammation. I can’t be outside much during these new extended heatwaves, which defeats the purpose of living in Colorado almost entirely. Who wants to live somewhere you can’t go outside for 3-4 months of the year. Let it snow!

But some of it is that I can’t have physical hobbies that are too energetically expensive like like Alex enjoys. I spend my summer weekends alone in bed reading and shitposting, while Alex has a fairly vibrant in person social life year round. My lower key physical hobbies like gardening also aren’t particularly social even though they could be if folks wanted to join me.

Part of the issue is that we have a rented townhouse n Boulder that is too small to allow for any socializing. You can’t really come visit us. There is no open space for welcoming friends, neighbors or family members. While people have come to visit us in Colorado, virtually none of them have set foot inside the house. Some of that was Covid but it was mostly not having any space for anyone to sit and relax for extended periods. And because we knew it was transient we never bothered to fix it.

And when you can’t guarantee your physical health, it mostly looked like people coming to visit Alex and me staying home. I couldn’t afford to use my energy budget outside the home a lot during Covid. I assume folks think I hate them, when in reality I just can’t guarantee I’ll be well enough to be out and about for three hours.

It’s much easier for me to commit to socializing if I am home in a safe place where I can lay down or access my medications. I’d like to play host as it’s just easier to accommodate my own limitations. It feels selfish but I think most people wouldn’t mind working around a minor disability like spinal pain.

I hope that people will take this as an open invitation to come visit us in Montana. We will be investing heavily in our guest rooms and eventually a full guest house in the barn. We want people to come up to take advantage of our access to a more remote and laid back form of living. You can go shoot with Alex or you can kick back on the porch and stare at the mountains with me. It’s up to you. But we’d both love to see you.

Categories
Biohacking Chronic Disease

Day 564 and Not Exercising

Summer is supposed to be when you are outside and most active. But that’s not been true for me. I’m not entirely when I stopped working out this summer, but I suspect it was sometime this May when I got the flu. When I was in Montana I caught influenza A from my husband while we were buying our new homestead.

I was pretty under the weather for the entire month. I probably extended my suffering by being in a high stress situation for several week. I had to do things like attend a two hour property inspection while I was definitely still sick. And then a few days later I was stuck in a car for 8 hours straight back to Colorado. Thankfully my husband actually did the driving. Negotiating the emotions of buying our first house while sick wasn’t ideal either. That was arguably the most intensive part of the entire experience.

Going into May I was hiking and walking an hour a day along with several consistent months of a 3 day a week weight lifting split routine. My squats looked good and my tracker apps were pleased with my low level ambient activity. I was still struggling with fatigue but I felt like being active was surely the best way of improving my energy levels.

I’m not as convinced this is true anymore. There has been chatter for decades about post exertional malaise in various viral and autoimmune cases. It is regularly brought up now in long Covid as well. I’ve experienced some variant on and off for years whenever I have symptom flares. Even modest exertion like a short walk can lay me flat if I’m not feeling well.

As I had a lot of ups and downs in my symptoms in June in July I let even modest exercise efforts go entirely. Between traveling to hot climates like Texas and the Mediterranean I wasn’t exactly eager to be outside either. Heat is my nemesis. I’m probably one of the few people who can go spend time seaside and struggle to be outside unless I’m literally in the water. There is a reason I am so eager to move to Montana.

Looking at my various trackers and diaries the past three years I have seen aggressive declines in my physical activity levels over the summer. As heat domes and 100 degree days become the norm I just can’t tolerate a lot of time outside. The temperature barely dips below 80 even at nighttime. And if I try to be active in that kind of heat I see set backs in all my metrics.

I’ve got years of data at this point and it’s funny that I’m always at my fittest and most active in the dead of winter. Everyone else enjoys sweater weather and Christmas indulgence while I am lifting heavy, energetically watching my nutrition and reveling in the cold. Maybe you can take the Swede out of Scandinavia but you can’t take the Scandinavian out of the Swede.

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Travel

Day 555 and Recovery

First off, today is a great number. I love this palindrome thing for me. It remains a surprise (at least to me) that I continue to hit these daily writing milestones but here I am just continuing this habit. I doubt I’ll stop anytime soon.

It’s always fun to have a “I did it” moment on a day where I’d rather not be writing. I’m jetlagged today after flying in from Heathrow last night. I did most of the transition just right but I still have a bit of that lingering sense of recovery one always has after travel.

I am always so hungry when I am jetlagged. I try not to eat at funny hours when adjusting for time zones but it’s not always possible. I’ve eaten at all the proper meal times this transit and it’s left me feeling massively over fed in addition to being hungry. Some of my body chemistry is clearly off.

I’m excited to be done with any planned travel for the foreseeable future. I’ve got my move to Montana in August but that’s not “travel” so much as it is a major life transition. Sure, it is an 8 hour drive from Boulder but at least I’m not getting on an airplane. I’d like to be done with the “back to travel” portion of my pandemic experience as it’s just not a ton of fun to fly anymore.

I’ll wrap it up here as I’d like to go to bed and see where day 556 takes me. But here at the end of 555 I am feeling good about this experiment and life in general.

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Travel

Day 554 and Creature Comforts

You’d be surprised at what you can tolerate so long as you’ve got the little luxuries in life. I think I stole that quote from a Vin Diesel movie Pitch Black. And I’ve found it to be quite accurate. Travel is the sort of experience where misery can be overcome by a decent pillow and room service.

I am emerging from some time on the Ionian Sea that happens to be on the wrong side of some of modernity. And let me tell you my appreciation for capitalism has been rekindled a thousand fold.

I did a layover in Heathrow overnight and I’ve simply never been more relieved to be in a decent business hotel. I must have looked a wreck as I got upgraded into a king suite with a soaking tub. And I just say I feel much more human after an hour in the bathtub, a night of sleep with multiple decent pillows and room service.

A good long soak and a full English breakfast has done much to improve my overall spirits. And my general condition of itchiness has gone by the wayside. The blue bags under my eyes are merely visible as opposed to horrifying.

I’ve got another leg of the journey ahead of me but I’ll be in business class and that’s a luxury of the sort that I very much crave at the moment. A flat lay, endless hydration and a bunch of saved Netflix shows is a creature comfort of the highest order. If the empire is going to decay I’ve got to savor every last moment of little luxuries before they are gone.

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Chronic Disease Emotional Work

Day 550 and Boundaries

I don’t maintain boundaries well. I am embarrassed by my needs. Ashamed even. I’m afraid if I maintain the boundaries I actually need I’ll doom myself to a life of loneliness. No one is going to go out of their way to hang out with someone who can’t do fun shit right?

And so I let my own needs slip. I agree to do things. I tell people sure I’ll meet up. I’ll agree to go to a meal together. I pretend to be excited about going somewhere. I yield to the expectations of a normal life. And then I hold myself together as long as I can. I’ll get some enjoyment out of my time with loved once. But after a few days if I don’t get rest and recovery I will be in a rough spot.

It always ends in a crash. When I know I could simply draw firmer boundaries and take time before it becomes a crisis. My loved ones are confused by how I continue this cycle. Why didn’t you say something? Why did I agree. And I honestly don’t know sometimes. Because I’d never agree to do anything ever if I had my way.

And I’ll admit I’m afraid that if I never do anything eventually I’ll be forgotten. That no one will go out of their way to be with me. I can tell myself that this isn’t logical. That this is just the scared inner child who experienced being left alone when she was small. That reality doesn’t reflect reality any more. But I’m not so sure. Maybe my nearest and dearest will still come out for me. But I do think we live in a harsh world where we mostly don’t care if others disappear into their homes forever.

Categories
Aesthetics Travel

Day 547 and Cruel Summer

The cruel summer is the season after silent spring. It’s hot out. Unnaturally and unseasonably so.

And people aren’t really prepared for it. Whole countries haven’t invested in air conditioning yet. I made the mistake of being outside during high noon. I was under shade and there were fans but I let my insides get simmered a bit while I ate lunch.

The exhaustion that overcame me was enough for ten siestas. A dozen forced naps would easily overcome even the most fervent consciousness. I’d simple done too much by existing and eating at the height of the day. What a foolish hubristic nature this mortal has.

What little defense the air conditioner has against the full force of noon will have to be enough. Sleep will find me if I can find an even small restorative space. One I know will disappear the second the key card is lifted from the auto electricity system.

Categories
Chronic Disease Emotional Work

Day 542 and Energy Budgets

I’m not much for active time off. Or being active at all really. I have a limited energy budget so I watch my energy expenditure carefully. Other people budget their money. I budget my energy.

I’ll often find myself jealous of other people who enjoy active hobbies. My husband plays tennis and shoots competitively. Every weekend he is off doing fun shit outside. He could easily play a sport, socialize afterwards and still have the energy to go out for dinner.

Meanwhile I’m probably in bed. I have plenty of fun, lower energy usage hobbies. I read a ton of fiction. I play games. I am working on my foreign language skills (be my friend in Duolingo), and of course I’m a notoriously active Twitter shitposter. All things that can be done while laying down!

And while I love all of those activities I wish that I didn’t have to run the math on how much a coffee with friends would set back my energy budget. I long for the opportunity to simply throw on clothing and head out the door without fear of how that might impact the rest of my day or even my week. But I run on the spoon theory just like your average disabled person.

My fear is that my energy poverty is isolating me. I struggle to explain that I’d love to spend more time with people but I need them to commit to cheaper energy expenditure options. But even the energy required to explain how friends and family can accommodate me is a challenge. It embarrasses me there I need everyone to work around my needs. And I’m often too scared to be demanding about what would work for me. So instead I just spend my time and energy alone.

If you are interested in learning how to make the effort to spend time with someone with energy poverty I hope this post helps. For instance instead of playing a round of tennis, perhaps you could come visit me at home and we could quietly chat on the couch. Instead of going out to dinner we could order in takeout. And no I don’t mean cook at home because then I’d need to plan, shop, cook and clean up afterwards. I very much mean order food on disposable plates so it’s minimal energy outlay. Disability accommodations are not very eco-friendly. It’s a different calculus of resources.

You may have to do a lot more work to be friends with someone managing a disability or a medical condition. If they don’t respond it’s not because they don’t want to see you necessarily. It could just be that you messaged on a bad day and it slipped through the cracks. We need you to actively work to be present for us. It’s a big ask but it is appreciated.

Categories
Chronic Disease

Day 540 and No Pain

I’ve come to accept an ambient level of pain as part of my daily existence. I’ve logged over fourteen hundred discrete pain measurements over a three year period. It’s likely one been in pain for a bit longer but those are the documented years since I had a diagnosis and began working to overcome it.

I’ve only had a handful of days where I’ve logged below a three. The pain scale most of the medial industry uses is from 1-10 with 4-6 being moderate pain and 10 being unbearable give me the opioids pain.

I typically log somewhere between four on a good day and seven by it’s end. I’ll usually have an eight or a nine a few times a month. Those knock me flat and I won’t be able to get out of bed. I can work and do basics when I’m at a five or six but it’s very tiring. And frankly it took a lot of mindfulness work to learn to work through pain.

Pain is actually exhausting. It’s hard to even begin to describe how much it reduces your total capacity. Articulating pain has eluded much finer writers than I. Just because one can live through it doesn’t mean one should.

To have had a morning of relief felt truly miraculous. It was sadly short lived. Some stresses hit my day and my pain is back up to a four. I can live with a four. I have been for sometime. But to finally have seen the light of having a pain free day after years of struggling will sustain me for a while. To know that it’s possible. It felt like a miracle.

Categories
Chronic Disease Emotional Work

Day 527 and Accomodation

Last night I was lucky enough to attend CoinCenter’s annual dinner. I’m a big fan of the work they do to advocate for better crypto policy. And their entire team is funny as fuck on Twitter.

But I had a moment of utter embarrassment when I arrived early in the cocktail party hour that was taking place outside. It was over 100 degrees and Austin City Limits has hard concrete floors. There was no way I was surviving 45 minutes on a hard surface standing without a chair in the heat. But they had not opened the doors to the dinner space.

I got completely flustered. But my husband Alex was able to immediately take control of the situation. He asked a security guard if we could go inside. It was a no go. Talk to the front of house. The head publicist was immediately sensitive to the situation. Alex explained that I have ankylosing spondylitis which makes me invisibly but variably disabled. Heat swells my spine and makes it a struggle to stand.

I was absolutely mortified that I couldn’t manage being outside for the cocktail hour. The embarrassment and shame of needing to asl for a special accommodation felt overwhelming. But it was too hot for me to be comfortable and there was no place I could rest comfortably. It was either ask for help or go home. And blessedly my husband has the wherewithal to ask.

The publicist brought us back. The only other person in the dining was Senator Gillibrand getting settled by her team. And then suddenly it wasn’t awkward. The staff completely understood. It wasn’t putting anyone out to be let in early. It was completely fine. I had been willing to leave rather than put anyone out. It no one was put out. Everyone just wants to help.

Categories
Aesthetics Startups Travel

Day 526 and Out of Practice Yuppie

A well dressed, tall, friendly looking white gentleman tried to join me on an otherwise empty blue velvet couch that I had deliberately planted myself in the middle of to avoid socializing. All that was missing was a “closed for business” sign around my neck.

I had attempted to tell him “no actually this seat is taken.” I was confused he didn’t immediately pick up on my body language. I had spread my entire body across the couch and had intensely “don’t come here” body language. I had my purse down to take up more space. I laid my hand with my wedding ring on my knee so it’s instantly visible. He didn’t pick up a single visual cue. I tried verbal. I literally shouted at him that no he wasn’t welcome to join me. “This seat is taken!” Didn’t make a difference.

I don’t think he could hear me as he sat down and tried to strike up a conversation despite his obvious discomfort clinging to the edge of the couch with half a butt cheek in mid air. He tried a few lines of conversation as I doggedly ignored him. I started a tweet and angled my phone screen towards him so he could see me typing complaints. Didn’t help at all.

I really had done everything I could to claim this space as my own. The couch was directly beneath an air vent trying to push cooler air into the crowded house bar. It was as hot inside the bar as it was outside but this one area had modestly more airflow making the summer heat at least breathable.

Which is to say it was over 100 degrees inside the old house. The Rainey Street bars in Austin are all converted old historical houses with wide open full floor windows and open doors to allow people to enjoy backyards with twinkling lights and hipster backyard games. These bars are a cultural treasure in March for SXSW when everyone enjoys the mild 70 degree early spring. In June during a heatwave they are a hellscape for yuppies who have simply forgotten how to socialize like normal human beings.

I was engaging in some incredibly rude behavior yes, but the bar has no other visible seating near an air vent and even the 5 degrees of lowered temperature and the moving air helped a little. I was wearing loose comfortable clothing but it was still intolerable. I regretted not sourcing a wheelchair for the week but then again none of these houses are accessible anyway. It was the only spot in the entire bar where I could even attempt to mitigate the effects of my invisible disability.

I could feel my spine starting to swell within minutes. Ankylosis is a winter disease. Heat and humidity swell the spine and that pain will radiate out to a kind of ambient full body throbbing intensity that cannot easily be ignored.

Actually, pain is just like the heat in that way. It overtakes your willpower slowly but inexorably. Quietly it makes itself known like the stillness of Joseph Conrad’s Jungle.

“And this stillness of life did not in the least resemble a peace. It was the stillness of an implacable force brooding over an inscrutable intention. It looked at you with a vengeful aspect.”

Joseph Conrad “Heart of Darkness”

The amount of determination you have to play mind-over-matter games is simply a fight against time. Eventually you get tired from the effort. You pray you don’t let it take you to the dark places it took Kurtz. But you know one day it could take you too.

Eventually my husband came back. He’d been searching for a bathroom and our hosts for the evening. The yuppie next to me pretended to ignore him. He sat for another two minutes or so just to give the impression he’s weirdly close proximity to me was on purpose as a resting place and not at all an attempt to strike up a conversation with a woman who did not want to talk. A tactic we’ve all used once or twice to conceal a social faux we didn’t mean to commit.

Alex and I used to attend parties like this all the time. We were aggressively on the circuit for both tech and media events for well over a decade. He used to produce TechCrunch Disrupt in a long distant past before he transitioned into being an operator at early stage startups. Then those startups matured to established companies. And now it’s become clear we are established professionals.

We no longer need the social circuit. Networking has lost its payouts. More people want to meet us and ask for things than the other way around. We’ve made it. And it’s a good thing too as the social contract is breaking down all around us. Yuppies have forgotten their manners as we are all out of practice with the basic niceties of the social season. Everything from how we approach someone to begin a conversation to whom we may invite to a private event is now fraught. Hell I can’t even remember how to apply professional makeup anymore so I can’t look down on a man looking to chat. We’ve all lost some of our humanity over the pandemic.

And I find myself mumbling “the horror, the horror” as I walk myself back to the hotel because the streets won’t allow taxis in the downtown core. The transition from soft times to whatever comes next is full of unexpected surprises.