Category: Chronic Disease

Categories
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
Chronic Disease Emotional Work

Day 544 and Want of A Nail

I let something cascade over the past thirty six hours. I knew it would have an expensive energy budget but I wanted to try it anyway. I feel basically fine having made it through the entire experience, but now all I want is to sleep. And thank goodness as the consequences could have been worse than just needing more sleep. And I am reminded of the grief that comes from small consequences.

For want of a nail the shoe was lost.

For want of a shoe the horse was lost.

For want of a horse the rider was lost.

For want of a rider the message was lost.

For want of a message the battle was lost.

For want of a battle the kingdom was lost.

And all for the want of a horseshoe nail.

For want of a nail

I had a bout of perhaps food poisoning yesterday. It was unclear what the source might have been. Bad dairy seems likely. My whole body cascaded into responses. I was itchy and in pain and a range of histamine and emotional responses as the stress cleared through my system.

It’s always an exercise in frustration finding what little mistake or miscalculation sets off a disaster. Something so small can have massive consequences. I suspect it’s more about the power of the compounding effect. Or maybe it’s that giant domino meme. Sourcing backing to one silly little catalyst always shows you the fragility of your own life and circumstances.

I can’t tell if I find this reassuring and devastating. If the biggest life events always come from something small how can we event expect to impact an outcome. Or perhaps that is freeing. If everything comes from some unknown small then of events then we can simply life our lives unbothered by preparations and foresight. Something random is bound to knock life off track.

I think I’ll take the sanguine view. How could I possibly let myself worry when a little detail like a boot of nausea can set off a whole day. It’s a Franz Ferdinand approach to life. Sometimes a spot of political trouble in the Balkans sets off the whole world. It’s always going to be something.

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
Chronic Disease

Day 517 and All At Once

I had insomnia last night. Earlier in the day I’d done a treatment for my spine and I felt terrific afterwards. I let the feeling of being without pain amp me up and then couldn’t come back down from it in time for bed.

I should have taken an Ambien and quietly read a book but, because I’m always worried about over using any type of pharmaceutical, I decided to wait and see if I could fall asleep on my own. Not that I helped myself in the matter. I kept my phone open and scrolled through such worthy topics as “what is Cat Marnel up to” and a meme account called tee-shirts that go hard.

I often find myself struggling with the decisions of “past me” when it comes to sleeping. I was in so much pain today I found myself unable to concentrate. The correlation between a bad night of sleep and a flare in symptoms is pretty clear. Living in a linear manner is one of the downsides of the human condition.

Around 4pm or so I had to tap out of the day. Forgoing the Ambien last night in a fit of false virtue meant I needed to a far worse drug today. I wanted to fight it but I just couldn’t. I slapped on a THC patch and put on Everything Everywhere All At Once. As I let the chemicals sort themselves out, I was reminded that time isn’t real as Michelle Yeoh made her way across the multiverses. The pain passed. Time did what it does in my human perception. And I’d survived it.

Categories
Chronic Disease

Day 513 and Pain Myopia

It’s a testament to how excellent my health has been for the past five months that I’m absolutely indignant about feeling shitty today. Last year feeling shitty wouldn’t have been a surprise. It was more like my default to be in constant pain.

Today my brain was fogged, my energy was low and much of that is tied to my pain being just unrelenting. I’ve been riding between seven and ten on a ten pain scale for the past two weeks. Infections tends to set off all of my chronic issues. My pain is tied to the legacy of old illness. If you think long Covid is bullshit, I can assure you that many significant infections leaves behind post-viral bullshit that can fuck your long term quality of life.

Pain is a steady companion in my life. In five hundreds blog posts I’ve mentioned pain ninety four times. Even I’m a little astonished looking at that number. Twenty percent of my life has the dark overhang of pain. I’m in pain more than that, I’d wager it’s about half of my life if my logs are correct. But 20% is about right for when pain is so present it’s at the forefront of my consciousness.

And that’s with assiduously managing it through medications, lifestyle and nutrition. But to realize that pain on the forefront of my mind 20% of the time feels a little bleak. It seems like a miracle I’m as functional as I am. It’s a miracle anyone is every functional with pain at if I’m honest. Pain is a myopic master.

Categories
Chronic Disease

Day 511 and Respite

I didn’t feel like shit today. One of my doctors made a suggestion for how to spend up the post-viral malaise of this flu. I woke up feeling at least a little bit more human this morning.

I knocked out the first draft of my talk for Consensus. A task that has felt so overwhelming I’ve now blogged about it three times in one week. I am never prone to procrastination when it comes to writing so I know I must have been super sick if I felt I couldn’t write. That’s literally the one activity I’ve completely taken the fear out of through daily repetition.

I was able to do all the various “living” activities today too. Basic tasks like showering weren’t overwhelming. I was able to make progress on odds and ends for moving life forward. Making decisions about stuff like what to eat wasn’t hard. Basically I felt normal.

I am not sure if this is a respite from the flu and it’s aftermath or if it has fully broken. But I’m going to enjoy it with an early evening watching television and fucking off. All my downtime doesn’t have to be sick leave.

Categories
Chronic Disease Startups

Day 508 and Deficit

I woke up feeling reasonably ok today. I slept well but checking my trackers I learned my recovery scores were pretty low. My HRV was dipping into 30% recovery territory and I had a low blood oxygen count. I’ve been recovering from Influenza A so it’s not a surprise my lungs are struggling. But I tried not to let some bad data psyche me out. Maybe I was ok. I told myself I just needed to stick to my routine as I can’t let myself get into a physical deficit.

So I went about my morning routine with some optimism. I got some coffee and made breakfast. I took several rounds of supplements. I did some basic grooming. I felt basically human. I was all excited to dive into work from the second I woke up. I was so excited I’ve been dreaming about the presentation I’m giving at Consensus. I literally woke up with talking points.

And then at around 10am I realized I’d used up all my functional hours taking care of myself. Fucking figures. I am already in a physical deficit from this flu. It’s scary for me to be in a deficit as my favorite coping mechanism is to engage in workaholism. I over prepare and over work and I make demands of myself that only sabotage the end result. It’s entirely counter productive. It just looks socially acceptable because of the Protestant Work ethic.

So I need to calm the fuck down and accept where I am and that it will still be good enough. I know my shit. It’s worth it. And I’ll deliver on better than the average midwit. Honestly even acting like this is kind of midwit. The real galaxy brains would just be vibing it anyway. But it really is amazing how easy it is to fall into midwit fear based patterns. Believing in the bigger broader math of your own life is really hard because so much of our own ego is rooting for us to indulge in our worst impulses. So I’m going to calm down, not worry about my energy deficit and continue to do the work. It’s not glamorous work. It’s mostly making good decisions day in and day out. But then compounding kicks in.

Categories
Chronic Disease

Day 507 and Better is Not Binary

A close friend of my husband and I sent me a sweet check in text message today saying he hoped I was feeling better. Our friend is a sincere and empathetic person. Because I know know he does care for me sincerely I said how I was actually feeling to him. I was feeling confused.

lol I never know how to respond to this sort of thing as occasionally I get regular person sick but I’ll never not be disabled 😂😭

“Better” is a bit of a loaded term for me. It suggests so much. Absolute improvement like my flu is over suggests better. Or perhaps improvement that will stay put forever is better. Or maybe it’s a good day in a string of bad ones and that’s better. Better can be though of in both binary and scale terms.

Default healthy people think of better as binary because once they’re good enough they are “better”. The flu passes. They get back to normal. But if you’re chronically ill or disabled then better is on a scale and you never get fully “better” but rather ebbs and flows. I don’t always know how to articulate this to abled well people.

If you have someone in your life who you think of as not being very social, I’d like to ask you to discover if it is because of a physical disability or ongoing chronic disease. Maybe they aren’t social as they can’t accommodate your pace but they would love to spend time together with you if you accommodated their pace. A lot of folks are chronically ill. And we like to be friends with you. We just need you to recognize we require some accommodations from you.