I’m currently a little over a month into a planned 3+ months of travel and, as always, I’m finding that solo travel forces me to be flexible about plans and expectations in a way that doesn’t come naturally to me. I tend to over-plan by default and experience a lot of internal pressure to make good logistical decisions. And travel is complicated; every situation is new and there are a lot of decisions to potentially make badly.

I try to be more flexible when I’m traveling because over-planning often leaves less margin for error when things go wrong and less opportunity to pursue interesting things as they arise. This strategy sometimes means that I realize after the fact when I could have structured things better (eg. I could have gotten much better utilization out of my rail pass) in addition to making actual mistakes (like getting tickets for the wrong day).

I don’t have, like, an insight or even a well-formed question here but I feel like I’m converging on the correct amount of perfectionism? I’m getting to do basically everything that I wanted to do, I haven’t had any major catastrophes and things go better-than-expected about as often as they go worse-than-expected.

I’ve heard that some people relax when they go on vacation? I might try it sometime

Another note about the pocket knife world:

A common phrase is, "a sharp knife is a safe knife", the reasoning being that sharp knives don't catch as much when cutting, and require less force when cutting, and are thus more predictable and don't slip as much or as forcefully.

I used to just assume that this was right because all the knife guys say it, and presumably they know the domain best. But this week I'm becoming increasingly convinced that this is very-persistent copium from people who really like having sharp knives, or at least is heavily dependent on the way you're using your knives.

It is just way easier to cut yourself with a sharp knife than a dull knife. It's way easier to cut yourself way deeper with a sharp knife. A sharp knife will just slide right through your skin and organs. A dull knife requires way more force than I usually find myself using (regardless of knife sharpness), to actually break the skin.

In some sense this is a "skill issue": If you're an expert at handling your knife, then sharpness does make the knife more predictable to you. But even then I'm unconvinced that the net effect is in favor of safety. I've watched a ton of knife youtube this week, and I sure see a lot of professional knife guys, whose whole deal is having and using and reviewing sharp knives, with fresh red lines all over their hands. I just don't buy that a typical person is going to entirely avoid steel-to-skin contact, and dull knives are way safer conditional on that steel-to-skin contact.

I've been getting really worried about Sam's severe photosensitivity, headaches, and malaise (diagnosed as "migraines"). There are updates to this story!

He was supposed to get an MRI since things weren't getting better. But the scheduling team was really slow and gave us inaccurate info. Thursday morning, I got up early to take matters into my own hands, making many calls and wrapping my head around the scheduling/logistics/pricing.

Soonest I could get was an April 9 appointment. But they advised me to get a "stat" added to the order, so I messaged this to Sam's doctor.

At about 2pm, we got a call back that we could get an appointment in SF (40min away) at 3:15pm. We rushed out the door. (Sam wore an eye mask on the way over. He hadn't left home in... weeks?)

More inaccurate info, more decisions, long wait time... But we got it done.

Since the order was noted as urgent, we got results 7am the next day. They say he's all clear! (Brain + orbits, with and without contrast.) Yay! This rules out tumors and various other serious problems. These problems were seeming increasingly likely to me, since he wasn't getting better.

But also, coincidentally... he might be getting a bit better now? The big MRI day didn't trigger him and he's been fine the last few days. Increased medication dosage MIGHT actually be working. Cool!

(The improvement isn't "he can tolerate a normal amount of light." We haven't checked that yet. The improvement is "if he is maximally careful about light/stress, he feels ok" — previously, we struggled to make him feel not-shitty at ANY level of avoidance.)

I, on the other hand, developed very bad PEM from the experience. 😝 I spent roughly 7pm Thursday to 4:30pm Saturday (today) in bed. I was so depleted that I think my body was struggling to digest food — at least, I think that's why my stomach was in overwhelming pain. That one's new for me.

It's pretty sketch for someone with ME/CFS to push themself like this, but I did it because I felt sure enough that I'd recover. And Sam is very, very important to me. Definitely the most I've pushed myself in a long time.

Anyway, we're really happy to have negative results and possible improvement!

This week in "Ben has been doing consumerism to his bedding and clothes, to an embarrassing degree, and has recommendations":

• I really like my new buckwheat-hull pillow. It's cooler and firmer than any other pillow I've used, and it doesn't need to be fluffed or get lumpy. It can be adjusted to be more or less full / malleable (just add or remove hulls). Until recently I've been using some latex pillows that are better than traditional pillows on these axes, but the buckwheat pillow blows them out of the water.
• I also really like this muslin blanket: muslincomfort.com/products/the… . It's got an extremely pleasant soft texture; it almost gives me goosebumps.
• Less extreme, but this cotton knit weighted blanket is also great: silkandsnow.com/en-us/hand-kni…
• I like Kuhl pants, especially Kuhl Denim Klassik jeans.
• Duluth Trading Co makes two kinds of cellulose-based underwear that are extremely comfortable even though I'm fat and most underwear is torture: duluthtrading.com/s/DTC/mens-f… and duluthtrading.com/s/DTC/mens-d…

I've continued to be relatively well this past month. Frustrated I don't have more energy to socialize, but thankful my health remains non-terrifying.

However!! Now Sam's unwell. We don't know exactly what's going on. Right now, he's about as disabled as me.

About 8 years ago, Sam noticed he started getting headaches from sun exposure. At first, this was entirely resolved by wearing sunglasses. But he's slowly gotten more and more sensitive.

Usually, he gets a headache, but not always. Sometimes it's just brain fog and fatigue, which still impairs him significantly.

Last month, his day could be ruined by 30-60min outside. Even with sunglasses on a cloudy day. This month, he's ~never going out when the sun is up. He's wearing sunglasses indoors, and spending a lot of time in our bedroom, where we've totally blacked out the windows.

Relatively small amounts of stress/effort can force him to rest for hours.

Talking to LLMs, I learned that this could be due to migraines. Even though he doesn't always get a headache, and his headaches aren't severe, his experience still could be classified as "having migraines." We spoke to a migraine specialist at Neura Health, and they confidently confirmed the diagnosis.

He was given rescue meds (triptans, nurtec) plus preventative meds (amitriptyline). But nothing is helping, besides resting in the dark.

He's been on 10mg amitriptyline for 3.5 weeks. Can take 6 weeks to kick in. (Apparently that's a low dose — we're probably going to try to ramp it up.)

The rescue meds aren't doing anything. We gave him a ton of supplements recommended for migraines, and they also aren't helping much (or at all, idk). He's taking magnesium (as Magtein), fish oil, B2, D3, multivitamin, CoQ10, NAC, and curcumin.

Ibuprofen might help a bit.

We haven't tried an elimination diet — I'm not sure if that's worth the effort or not. With how unsuccessful everything else has been, I'm wondering whether "chronic migraine" is a misdiagnosis. He's not having acute attacks centered around headaches; it's more of a constant sensitivity, leading to varying levels of impairment (with or without a headache).

I've run this through Deep Research. It sounds like his symptoms and treatment-reactions are atypical for a migraine, but nothing else is clearly a better fit. (It suggests: Intracranial hypertension, MS, chronic infection)

I think I'm going to book him an appointment with a neuro-opthalmologist at UCSF. I welcome recommendations on who else to see, or what else to investigate.

Hey y'all what's up

I have something to share

I'm a fucking person again

. . .

Few people understand how bad ME/CFS is. My case, which has prevented me from working or living a normal life, has been *relatively mild* for most of the past 5 years. It can get so much worse.

In the last few months, I experienced the worst health of my life, by far. I descended from mild/moderate ME/CFS to moderate/severe ME/CFS. I would crash for days after a 5 minute conversation with a friend. I couldn't kill much time watching TV because any form of prolonged focus could wreck me. I started getting incredibly sensitive to light and sound. One night, the sound of Sam gently getting ready for bed was so stressful that I cried.

I knew that if I needed to get healthcare for any urgent, unrelated problem, I'd be fucked. If I fell ill with anything, I would not be ok.

I felt like I was looking down the barrel of a gun. Things kept getting worse. I was spending most of my time in bed. I held onto gratitude that I was still able to get up to use the bathroom, but I looked into buying a bedpan, trying to be prepared for when I'd need one. And I told myself: at least I can still eat solid food.

There was a chance I'd become "severe" or "very severe" — very severe ME/CFS is extremely bad.

In September 2024, before my descent, I spent 41 hours socializing. That was my baseline. In January 2025, I socialized for 81.5 minutes. 3% of my pre-decline capacity.

. . .

On February 9th, I had a friend over. I felt strong. I felt like things were really turning around. I thought: I bet I could talk for *40 minutes* today.

We talked for 214 minutes.

I thought: Ok. Wow. Even if I feel horrible for days, it is amazing that I could talk for this long at all.

I settled into resting by myself — sometimes the crash doesn't kick in until I settle down.

And then
an hour went by
and I still
felt
fine

Do you know what that's like?

. . .

My step count data can be used to make a nice chart showing my energy level over time. You can see that things got worse, and worse, and worse — and then better.

My improvement does not seem random. My body did not fix itself just as mysteriously as it broke. My improvement seems to be a result of my actions.

I hesitate to explain those actions here, because what helps one ME/CFS patient rarely helps many others. And what I did was complicated. (A mix of many pills.)

But I'm telling you this, because this is good. When you know why you're feeling better, you have a much better shot at staying healthy.

I'm still very limited. I've *been* very limited, for years, and I'm not even back up to the health I had in October 2024. But I'm no longer so scared that I'm about to be stuck in a state of living death. (And that's all that matters, right?)

Optimistically, I'm hoping I can use what I've learned to recover from ME/CFS more fully. I think I have a shot.