Categories
Preparedness

Day 620 and AQI

I am in the throes of a horrifying migraine. The take two Imitrax and pray type. It’s also the nausea inducing type so I’ve not eaten all day. I feel awful. And it’s mostly not my own fault even though I often like to blame flares in symptoms on my own lack of discipline or purity in maintaining some Platonic ideal of lifestyle or wellness regimen.

It is fire season in the west and I’m sure some, if not most, of my migraine is tied to the horrifying air quality that is choking out thousands of miles of California, Washington, Oregon, Idaho and Montana.

An AQI reading of western America on September 12th at 3:48pm Mountain Time from PurpleAir

The AQI or air quality index in my neck of the woods is 160. Unhealthy for sensitive individuals is the coy and somewhat misleading phrase used. It means in practical terms visibility is so bad I can’t see the mountains a few miles away.

Montana is at the moment free of any major fires. Our colder temperatures, lack of pervasive fire beetle blight, and reduced density makes it statistically safer than the Colorado front range when it comes to total fire danger. But it’s no safer from prevailing winds and the pollution from fire in other states. In order to escape from it entirely I’d probably have to leave the continent.

I’ve obviously opted not to leave my home region of the mountain west even if I have accepted moving to a more northern and protected corner of it. But there is a certain existential “No Exit” sense I have with AQI and fire season in general. It may just be my lot in life. Maybe it’s everyone’s lot. To give up your homeland is a complicated fight. I expect for some of humanity it must involve either certain death or the prospect of great riches

Categories
Chronic Disease

Day 559 and Stuck

I got stuck on the couch today. I’m not entirely sure why but I’m in the middle of a massive symptom flare. The pain is so acute and unrelenting that if I so much as sit up from bed I’ll get stuck in that position. I made the mistake of trying to eat lunch on the couch around noon and didn’t work up the capacity to get back into bed for over an hour.

This is becoming a theme on bad days. I’ll find myself upright for forty minutes completely unintentionally because moving, even to a more comfortable position laying down, is so painful I will put it off until I simply cannot remain upright anymore. It’s just that bad. Even the higher grade pain management isn’t doing shit. I’m just stuck in the pain until an even worse pain develops.

That’s probably a good metaphor for life. We will stay in an uncomfortable position until it’s so intolerable we simply must change. And I’d love to wax philosophic about that but I mostly mean it literally. If you’ve ever wondered how I got popular on Twitter, it’s simply because it’s the only thing I can do when I’m physically stuck in place by pain. I thank the internet Gods that this has been monetizable through investing or I don’t know what I would do.

You could almost surely correlate the number of tweets I send with the pain scale of my day. If I’ve tweeted more than 50 times on any given day it’s probably because I am over a 7 on the pain scale. It’s 2pm and I’ve tweeted 32 times today not including my DMs. I keep hopping the pain will abate enough that I can shower but it doesn’t show any signs of letting up today.

Frankly I’m just relieved it’s only my spinal pain and not anything else more exotic. Earlier this week I was dealing with being itchy and then I had a migraine that took 48 hours and several Imitrax to break. Regular old spinal pain is at least a recognizable and normal return to form. But until this nerve storm abates I’m stuck. At least until something worse comes along.

Categories
Medical

Day 545 and Stretched Time

Time has never acted like it is linear in my observation. It extends and stretches when you wish it could speed by. And it slows and circles back when you would most prefer it go quickly. Time is relative is a good joke, but also might be more related to a curse.

As I was waiting for a food delivery order today I could feel time unspooling. It stretched on into two episodes of some engaging but fundamentally disinteresting Netflix show. My head began to hurt. I remember taking an aspirin and getting a snack. I recall a phone call made to the delivery service order. And then my sense of linearity starts to fray. I’m not sure what happened next or in what order.

I think it was clear a migraine was coming on in the middle of this first act of swollen stretching time. But I couldn’t tell you for sure. Once pain hooks up with time it requires a Buddha or someone enlightened on the ways of Jhana. Still I tried to push myself out of the path of this time. Why not ordered a pizza as a replacement meal. That might be quick? I blamed the blooming migraine and it’s sister nausea on a lack of food. But in reality I was past the point of being helped. I was simply trying to avoid the oncoming path of the migraine.

I recall a pizza arriving but not the original delivery order. I made an attempt to eat. But I was in the grips of the time expanding migraine now. I took an Imitrax. I had some CBD. Perhaps terrapins and triptans could convince my mind that the moments of pain were short and fleeting. That was my best hope for experiencing the migraine in a positive way.

I put on a face mask. I sunk into a mindfulness practice. I noticed and turned over the kinds of discomforts I found myself in one by one. The emotional fears that I wanted distance rose up. The pain that bubbled around my body tightened, giving me a rationale for not wanting to being touched. A mind that wanted to drift far from others overlapped with my normal mind, this mind wasn’t forced to endure the noisy input from the world. All those experiences rose and burst forth and dissipated. Pain, distance, and fear came and went.

Consciousness seemed possible again. I had the sense that I could articulate some of what happened to me over the past three hours. That perhaps I could codify it in writing. It wouldn’t be as vivid but it would be there. The fear and failure and disprovals still existed but less acutely. The pressure on my mind had become less swollen. Time wasn’t threatening to extend out any other direction but forward. And maybe I could finally enjoy a bite to eat again. It has been five hours total since the migraine began.

Categories
Medical

Day 489 and Day Dreams

I had a dream during the day today. I mean the rapid eye movement kind not the fantasyland imagination. I had laid down to rest my eyes while my migraine medication worked it’s way into my system.

Generally I don’t fall asleep in the middle of the day. This is doubly true if I’m beating back a migraine. Triply so if it’s a particularly bad one. This migraine was so bad I needed nausea medication as well. I frantically texted my husband in the other room to help me look as I couldn’t locate my medications as keeping my eyes open triggered cascades of lightning flashes behind my eyes and nausea so bad I was afraid I’d lose the contents of my stomach.

I put on noise canceling headphones and a face mask and passed out. I woke into a dreamscape city that resembles the west village in New York. I was being instructed by a coach of some sort to forgive someone. Maybe it was myself. Maybe it was a cofounder of a past startup. The texture of the city was busy. Tourists were everywhere blocking the sidewalks. I recall a conversation about the end of the pandemic. Perhaps everyone was out celebrating. There were posters for movies or shows on every available service. I distinctly remember one in front of a fry shop that had media quotes promoting Billy on the Street combined with Family Guy characters. I’ve never seen Billy Eichner’s television show.

I woke back up nearly four hours after having originally gone to lay down. I felt dazed. I had the slightly unsettled feeling one gets upon waking in a bed that is not one’s own. I was disoriented and dizzy even laying down flat. My nausea still has not disappeared entirely. But the migraine had mostly passed.

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
Medical

Day 408 and Getting Ahead

My first piece of international travel since the pandemic began is coming up. I’ve not been on an airplane in over two years which is wild. But I needed to get a booster shot for my travel papers.

I was a bit nervous about how I’d react. I didn’t have the easiest time getting vaccinated. But I had a mild case of Omicon in December which made me slightly more optimistic about it.

I got caught in a snowstorm getting the booster yesterday. Which is so far the only inconvenience. I slept fine last night. I didn’t appear to spike a fever. I had no aches or pains other than the ones I live with normally. I’m so far enjoying having little to no reaction.

I did however take very good care of myself. I felt a migraine coming on mid-morning and I rushed in with all the good drugs. I wasn’t going to let myself suffer at all. And I am suspecting that keeping any and all stresses away has in fact been excellent for my body. Just another reminder that drugs are in fact good. Loving yourself can often mean mean treating yourself kindly. Removing the option for suffering and maybe all recovery can be this easy.

Categories
Emotional Work

Day 405 and Okayness

I wasn’t in my “okayness” this morning. My focus on self love hit a snag on hormones. I woke up with a migraine and menstruation and I wanted to treat myself as an attack surface. So I asked my Twitter feed to tell me how they got to okayness. And it was beautiful.

I am often struck by how if you share your vulnerability with people they will open up with their own. The joy I get from connecting with you in the fullness of being ourselves gives my entire life meaning.

What seems even wilder to me is that this kind of connection happens on Twitter. It’s crazy that out in some virtual world, the metaverse if you will, the most human needs are met. We can see each other on a phone application. It’s enough to take your breathe away.

I’d encourage you to browse the thread as it’s filled with insight. People take long Lindy walks and do their nails. They lower their standards and raise their spirits. They integrate shadow elements into their identity. They take little risks and embarrass themselves. They imagine the tweet they would send at the end of the day with their accomplishments. But most of all people make things. That even when being a human being seems like an impossible challenge our capacity to build gives solace.

Categories
Medical

Day 397 and Good Drugs

I feel a migraine coming on so I’ll do the bare minimum and get on with taking an Imitrax and heading to bed. I recently learned that psilocybin and the migraine drug Sumatriptan (aka Imitrax) are in the same basic category of drug except Sumatriptan isn’t psychoactive. I’d cite it but I’m having a hard time looking at screens.

Categories
Chronicle

Day 395 and Uninspired

I was texting with a friend that I wasn’t feeling very inspired to write today.

Do you think you will just skip it?”

It has actually never crossed my mind that I’d skip writing. I was idly commenting that it was on my to do list. My friend probably meant it more as a joke. Maybe I skip other items on my to do list. I haven’t meditated today. Or checked my email. But skipping writing just for being uninspired? That won’t be how my streak ends.

I’d be lying if I said I hadn’t considered how the streak gets broken. I’ll have morbid thoughts about accidents. You know the kind where your mind decides to make you consider something horrifying. What would it be like if I drove off the road? That would probably end the streak. Thanks mind for going there what the fuck.

But even when I had to go to urgent care or stay off my phone for the mother of all migraines, I still wrote something. It’s more likely that something stupid happens like a flight delay accidentally fucks up timing. I do actually have an international flight coming up and I’m planning to write first thing in the morning to work around the ten hour flight time. But today? Nope. I got a few paragraphs down. And that still counts.

Categories
Chronic Disease

Day 384 and Power Save Mode

I was convinced today was Thursday. I sent an email to my doctor confirming the appointment I was sure I had. She sent back a confused but it’s Wednesday response. That’s how I knew I went into power save mode.

I do my best to carefully cultivate reserves of energy. I used to have an attitude of “don’t save any for the swim back” as now I know I need to balance expenditure and recovery. I’ve been stopping when my battery is partially drained. So I wasn’t entirely sure I had over done as it’s been a while since I overshot my energy. That’s progress for me.

Yesterday I missed the signs for a migraine coming on. I was focused on something else and found myself surprised when I was vomiting and needed the lights off. Today I was so drained I went to lay down for a minute and found myself taking a three hour nap. Even though I had a good night of sleep. I wasn’t in a sleep deficient.

I was just in power save mode. I’d gone below the reserves I’ve have so carefully cultivated for the last year. Knowing that I’ll keep working on my reserves. I’ve got big plans coming up and I need to be operating on full capacity. So that means respecting I need to recharge now.