Tag: Migraine

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.

Categories
Emotional Work

Day 310 and Short Burnouts

Is it possible to have brief periods of burnout? I’d always associated it with the years on the other side of a startup. If you’ve put in long hours for an extended period it makes sense to have a year or more of recovering from dipping into reserves for too long. But I wonder if it might be possible to have a week of burnout from a couple intense months.

I wrapped a few big projects last week. It was easier than anticipated and I felt a real sense of joy and accomplishment. But then this week I was a bit of a mess. I had several days of terrible sleep. Then I burned my hand making breakfast. Fun fact blisters are a form of burn, which finally made sense once I experienced a real burn as it’s healing looked exactly like a blister you get from a hiking boot. I’m feeling a sense of overwhelm with the drumbeat of preventative care and appointments that comes from 20 months off from things like dentists. I just felt like I got nothing done that was important to me this week. It was one thing after another. And it seems like others are feeling the stress as well.

Maybe it’s alright to have a week of feeling unproductive. I was very on for all of September and October and then I wrapped some stuff so it’s possibly normal to feel like all focus and willpower has gone out the window. But the temptation to force a fix on it is quite strong.

I’ve got a habit of turning everything into an opportunity for self improvement. I’ve been concerned about my capacity for using self control as a way to abuse myself. It’s been a running theme that I find myself concerned about the work that goes into keeping myself productive and healthy. So maybe it’s just par for the course. But I’m already worried about next week as I’ve got 4 fucking doctors appointment including one that involves a long drive. Maybe there is never a world where productivity is easy to come by and I should let go of the worry. The days are short but the years are long. And progress compounds over time.

Categories
Biohacking Chronic Disease

Day 287 and Routines

I haven’t figured out how to incorporate my routines into my busier workdays. I feel like I’ve written this blogpost at least 3-4 times but somehow I never seem to find balance easily when I make big changes to how I spend my time.

All the self care efforts that has become comfortable rhythms go by the wayside as soon as I add in new obligations. And then my body gets pissed that I’m not taking care of it and I get into the same pattern of two steps forward and one step back.

You’d think after experiencing this issue multiple times I’d be better at ramping change slowly but I remain the sort of person that loves to dive into shit head first.

After much enthusiasm and progress I’m writing todays post from a physically mediocre places. My stomach is upset. I am fighting off a migraine. My muscles are tense. I’m anxious about all of these symptoms turning into a messy cascade. So I’m turning to my pharmaceuticals, taking a mess of prescriptions, and going to bed. Maybe tomorrow is another chance to find a better balance.

Categories
Chronicle

Day 253 and Lady Troubles

Occasionally I find myself annoyed that women’s bodies are less studied than male bodies. You’d think we’d want to know more about the vessels that produce the heirs to make fortunes. Grumbling about mishandling property rights aside, I do wish we knew a little more about women’s health.

I get migraines when I menstruate. If that particular tidbit of information is too much for you well sorry but maybe it might be helpful if the basic biology of women’s bodies were a little further to the forefront of cultural consciousness. Women talk about it with each other which is why I’ve got a host of folklore on cramps, bloating, headaches, sore breast, and emotional rollercoasters.

I’m fairly lucky to have migraines. It’s marginally more pleasant than what my friends with heavy flows or bad cramps go through. And I say this just having vomited from the nausea that comes with my migraines.

And on that note I’m signing off as I only went on a tangent about the need for more effective study and treatment of women’s health as it’s the only thing I can think of to write about. And I committed to writing something every single day. So here I am writing through the migraine. I bet tomorrow will be more interesting. And I’d be thrilled if later in life we solve for the interplay between hormones and headaches so I never write about this topic again.

Categories
Chronicle

Day 249 and Vacation

The last vacation I went on was a long weekend to Miami in early February 2020. I had been following the outbreak as it unfurled in Wuhan at the time but it was before covid19 became a pandemic. It didn’t appear as if it had made it to America at that point. Three weeks later and I began locking down.

I remember having a terrible migraine on the second day of that vacation. It has been a question as to whether I was healthy enough to travel. We were still stabilizing my ankylosing spondylitis but we hadn’t been on a vacation for over a year at that point as I had spent the summer and fall in and out of hospitals. So we risked it. It seemed like we should at least try to take a vacation. Even sick folks deserve a break.

I took a picture of the darkened bedroom while I rode out my migraine in Miami

In hindsight obviously I’m glad we took a chance and went to Miami. Even if I spent a day of the trip in a dark room. As much as I was early on the pandemic, I didn’t fully appreciate that it would be so long and so restrictive. Even being able to be in a cold hotel room nursing a migraine was an unimaginable luxury for most of the pandemic. I’m so grateful we took that last trip. Sure it doesn’t look particularly exciting but to me I see it as the last time I felt safe traveling.

Now that I’m in Colorado, which is it’s own vacation destination, I don’t feel as much of an urge to get out of town as I did living in Manhattan. Sometimes you do really need to escape from New York. But no one needs to escape from Boulder.

Yet right now I am craving a vacation. I want to feel a change in routine. Hell a migraine inside a hotel is still more exciting than a migraine in my own bedroom. I’m not likely to get on an airplane as the cases are a mess but maybe its time to go somewhere. I hear Aspen is lovely in the fall.