Tag: Pain

Categories
Emotional Work

Day 512 and Not So Glamorous

Remember that respite I had yesterday from the flu? Yeah me neither! I barely crawled out of bed this morning after some pretty gnarly dreams. My subconscious was going through it.

I had a three hour session of biofeedback yesterday working through some of my self limiting beliefs. It’s truly wild how you will just perpetrate the worst emotional violence on the people we love the most. Alex and I in particular love acting out various O’Henry stories in our marriage. Gift of the Magi is a particularly favorite where we will actively sacrifice something we love for the other only to discover we’ve destroyed the very thing that our partner loved. It’s a super fun cycle and every time I think we’ve found a way out of the cycle we manage to do it all over again. The problem is the glue.

So I was a bit frazzled today from working through all the emotional stuff. I need to stop giving Alex power by letting him take care of me. He needs to drop care taking me. You know standard marriage stuff. I can write whole love letters about it. Anyway I digress.

I was a bit fried today as I was recovering from pushing yesterday. I happened to have a friend that wanted to talk about how I was doing. I think he was expecting a more glamorous even sexy answer. People often think I’ve got a more interesting life than I do. Which is funny as I feel like I write about the mundane details of chronic disease with some frequency. But today I was not swanning about in Europe or writing love letters. I was in a dark cold room fighting off a migraine and some spinal pain. Because sometimes life just isn’t all that glamorous. And honestly that’s ok.

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

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.

Categories
Aesthetics

Day 485 and Reality Shows

I’ve been watching Netflix’s reality dating shows this past week. I’m absolutely obsessed with the Nick and Vanessa Lachey properties in which twenty and thirty somethings do preposterous social experiments because they want to be married that badly. I’ve now watched Love is Blind and the Ultimatum.

I’m not typically a reality show person. I’m a yuppie startup bro living in the golden age of prestige tv. I like expensive scripted dramas and the media has provided me with ample options. But I’ve often wondered how much I’m missing out on popular culture by avoiding reality television.

I’ve got girlfriends who are obsessed with the Bachelor but I’ll be honest I’ve never been able to focus on unscripted tv. I admire the hell out of the product empire the Kardashians have built but I’ve never actually watched their anchor television show. There is clearly a deep cultural cross current that reality television has in America and I’ve largely let it pass me by. Well except for having to live through the Trump administration.

I’m particularly interested in how these reality shows reflect our cultural desires. I wrote this week about how the vibe shift is showing an emerging camp of right wing counter culture. The single minded obsession with marriage and traditional family structures in both Love is Blind and the Ultimatum make me think they both reflect the cultural power of traditionalism. Twenty five year olds offering ultimatums to their partners that they must get married now is a bit wild to me as a geriatric millennial. It was considered a bit retro to be married before 30 during the Girlboss new left Obama years. That’s clearly changed.

I’m curious what else is changing culturally that will be reflected in reality television. Love is the most universal so perhaps I’m projecting a bit on the medium. Maybe marriage is easier to transpose onto unscripted television. But I’d be willing to bet there are a lot of other traditionalist vibe camps that will arise on America’s favorite entertainment genre.

Categories
Aesthetics Emotional Work

Day 481 and The Mood

There is a scene in Dune where heir apparent Paul Atreides is dismissing the danger he is in from the Harkonnens. He tells his instructor he is “not in the mood” to train.

It proceeds to be a standard issue coming of age issue. Paul realized being responsible means finding the mood if the need arises. The circle of manhood. You’ve read Joseph Campbell too so you can fill in the hero’s journey.

But I’ve recently noticed an uptick of people not being in the mood. This isn’t for lack of desire to build and and will manifest. People are exhausted by the increasing chaos. The entropy pulling on all of our lives is weighing on us. People have let big life decisions go by as the uncertainty plays out. We want to stop to attend to those problems. We’ve got health issues we’ve not checked out. We’ve got family members who are struggling. We’ve put off buying homes and making trips and investing in things b

But we cannot let the pace and uncertainty of the now prevent us from setting the foundations for our future. We may not be in the mood. We may be tired and scared and overwhelmed. But the occasions that require action do not care for our moods.

Categories
Emotional Work

Day 480 and Responsibility

I usually have therapy on Mondays. I stack all my emotional work into the first day of the week so I can be my most present for everyone in my life. But today I just couldn’t show up for my emotional work. I’m in a lot of pain and a bunch of things are up in the air professionally and personally. I’m just not able to be here.

Thankfully I’m lucky enough to be surrounded by people who are working on deepening their emotional practice. Someone was able to help me see that I wasn’t able to show up even though I physically showed up. They did it with one insight too.

Responsibility is having ability to respond

One insight and my mind was blown 🤯. In that moment I didn’t realize I didn’t have the ability to respond. I was abdicating responsibility. I was reactive. It wasn’t under my control. I couldn’t preserve my ability to today today. I was not preserving my response ability.

I quietly bowed out of therapy for the evening. Well not so quietly I cried a little and shared my disappointment. I needed to take responsibility for myself in that moment. So in order to preserve my capacity to respond I had to make the decision to bow out. I needed to be the adult that would take care of whatever portion of me was incapable of working through the physical pain of that moment. My inner child needed me to parent and I did. Now hopefully I can continue that streak through mealtime, bath time and bedtime so that my adult and my inner child can respond to the best of our ability to tomorrow.

Categories
Chronic Disease

Day 472 and Missing Out

I never had headaches in my twenties. Migraines were a cultural phenomenon I was aware of it never experienced. After I did fertility treatments about four years ago my body went though a number of changes for the worse. I developed an inflammatory condition. And I became acquainted with migraines.

My migraines are the light and sound sensitive type. They leave me nauseous enough I have a prescription just for that. I’ve tried a number of treatments for the migraines prophylactically, but only Imitrax really helps once it starts. If I’m lucky I can turn one around in 3-4 hours with medication and a cold dark room.

Today wasn’t a day where I could turn it around fast enough. And I feel sad and alone and depressed about it. I was supposed to meet friends for a nice meal to celebrate with them and I’m missing it because I couldn’t control the migraine fast enough. Alex my husband made it to dinner with our friends but but alas at home in a dark room waiting for my Imitrax to kick in.

I debated if I could force myself into showing up but it was decided the amount of pharmaceuticals required wasn’t passing a cost benefit analysis. I tried to make a case for it saying if I just tossed enough pain medicine at the migraine maybe I could do it. But the rational vote from Alex was a veto. And he’s right if it takes an opioid to get me out the door that’s not something I can justify for a social event.

The irony is I actually dislike fancy dinners out. I find them to be exhausting. Having to sit on uncomfortable chairs and socialize for two hours is very expensive energetically for me. It probably takes a day to recover from the energy expenditure and I often have to up the doses of my stabilizing medications. I tend not to say yes to them as it’s expensive for me and I don’t enjoy them.

So I don’t know why I’m so upset that I’m missing this dinner. But I am so upset. Maybe it’s because I’ve had months of stability without any issue. When I said yes let’s go I expected to be fine. The last time I recall having a major crash was in early February. Since then I’ve flown internationally, lived on my own, and made it to a crypto conference in Miami with little incident. So maybe I was due for a bit of a crash. Maybe it’s just inevitable that if you push you need to rest.

But I feel miserable, inadequate and guilty about it. Like I should have tried harder. Should have taken more drugs. Or at very least been more upfront that sometimes my body is unpredictable and I find it challenging to have be “on” and in public for social things that aren’t strictly speaking crucial. But now do you tell beloved friends that they aren’t crucial? You can’t really. I just have to hope I can do it. And mostly I can. But not today. Today I couldn’t.

I feel like maybe I owed my friends a performance. I can perform in even dire circumstances. I never miss a dinner or event or appearance at which I’m required professionally. But I don’t hold myself to that stand personally. Sometimes things happen and I just can’t do it and I have to let my body dictate my schedule.

That reality makes me feel isolated and alone. Because I can’t make the same commitments as regular people to socialize and enjoy normal things. There is always the risk that I’ll have a bad day. And I save my energy for work because I have to. So that means I don’t get to have a normal social life like other people. I don’t usually mind but today I do. Today I’m missing out.

Categories
Chronicle

Day 449 and Lost Time

I lost some time this week. I was living on someone else’s schedule and it cascaded into a wash of hours where I felt like I was completely out of sync with the wider world as I struggled to get back in my own time.

I’m not at my best when I have to push myself to live on other people’s time. Everything shrunk down to my bedroom and my body and my own myopia about righting my sense of reality. I was in a lot of physical pain which pushed me mentally as well.

I started to feel genuinely better and on track around 5pm in Frankfurt. Technically that meant I still had a half day in California to work. But I’d lost the will to push. I needed to regroup. I am telling myself that it’s ok because it’s not as if I work a standard 9-5 job. I can take the weekend to find my way back to the timeline. And if I’m honest some of my best work gets done on Saturday night.

Categories
Chronic Disease Medical Travel

Day 437 and A Mood

I’ve been struggling with allergies ever since I arrived in Frankfurt last week. The stress of travel and the constant itching affect my mood more than I’d like.

It’s a weird situation if I’m honest as I’m so happy to be traveling and on my own after two years or being in the same place and with the same person. I love my husband and I love my home but I’m sure everyone can relate at the end of the pandemic for the need to be alone.

My mood has largely been buoyant except for the constant low level misery that is these damn allergies. My eyes water. The skin around them is red and raw. My skin keeps finding new intermittent patterns to express hives and eczema. And I’ve built up quite a tolerance to Benadryl.

The allergies stress me out and then my spinal pain worsens and then suddenly I’ll find myself in just a miserable sad mood. I’m grateful I can write it all down so I can get the mood out. I just want to be comfortable in my own skin and smiling again.

Categories
Internet Culture Medical Startups

Day 415 and Accessibility

I don’t think of myself as disabled or requiring special accommodations, though I have a well controlled medical condition that swells my spinal cord called ankylosing spondylitis. But for the first time since my diagnosis I really felt like I was handicapped. And I am feeling so much sadness over the idea that I might genuinely be disabled.

I’m attending ETHDenver and it’s wildly over capacity. No consideration has been given to any kind of basic accessibility. I didn’t think it would effect me though till I got here. I can walk without a mobility aid and if you met me you’d never know I have an issue. But I can’t stand in line on cold concrete for two hours. It turns out I would need a wheelchair for that kind of activity. And even if I had a wheelchair the first two days were in the cold and snow so I couldn’t have wheeled over or around the slush and water.

So I have only attended private parties and small events and group outings. This is great for me as I’m a well networked established member of the startup ecosystem. I’ve got a popular Twitter handle and can easily reach out to people. But I’m noticing just how much a bit of inaccessibility will gatekeep the crypto and web3 community. If you don’t have my heaps of privilege there is no way you could navigate this conference.

And we really need web3 to be welcoming and accessible. To build a better future with infrastructure and economies we all collectively own and benefit from we need an order of magnitude more people participating. But if no one can get in and experience things first hand than web3 will just be a repeat of the oligarchy of web2. It’s honestly my worst fear for crypto. We will accidentally exclude the people who will benefit the most from our innovations.