Kate Violette

Time to read: 10 minutes

I’ve been on the fence about whether to write a “Hello, 2026” blog post or not, similar to how I’ve discussed my yearly goals on here the past two years. On the one hand, I like having a record I can read later, to remember how things were going for me at the time. For some reason, the older I get, the more this feels important to me. On the other hand, I suffered a massive worsening of my already bad illness in Sept 2024, and didn’t recover to my prior baseline until the last few months of 2025. The year 2025 was a big wash for me—well, that feels a bit unfair. Allow me to try to explain.

When you’re so sick that while not yet dead, you also aren’t really living, it’s hard to be grateful for that time. It feels like a pretty big loss; a year of your life evaporated without any larger meaning. The only difference is that someday you might live again, and that is why I have still preferred an energy-limiting illness over death. And I want to emphasize, I’m not talking about like, “oh well I’m stuck in bed but I can sit up and read and watch movies and do other things from bed”. I’m talking about a level of illness where you have to lie flat in bed, in darkness and silence, and don’t have anything fun you can do that wouldn’t cost you even worse later. A level of illness that’s like 16 hours of meditation, all day long, only punctuated by brushing your teeth, using the toilet, and meal times. (And I’m one of the fortunate ones who has been able to brush their own teeth and drag themselves at least to the toilet and back, if nothing else, on their very worst days. It’s pretty fucked what counts for “fortunate” with ME/CFS.)

Even just regaining the ability to read a few pages from a book, or scroll some social media on your phone for a bit, is a massive step up for one’s daily quality of life. Being stuck in bed feeling immensely awful and not even being able to do much of anything to distract yourself from your suffering (both the physical suffering, and the psychological suffering) is the absolute worst. But now that I’m starting to see improvements and it seems we’re actually making real progress on the root causes of my illness, has it all been worth it? Yes. I’m grateful for the year of living semi-death because it meant, if nothing else, that I could maybe have a 2026 that’s closer to life again.

I want to tell you how I’m doing, but I’m also a bit afraid to do so. A phenomenon that anyone with ME/CFS (and similar conditions) will tell you is that as soon as you tell people about a bit of progress, they tend to oversize it in their heads and starting thinking you’re now doing much better than you’re actually doing. They’re then less likely to keep supporting you, logistically and/or emotionally, even though you need that continued support to keep getting better. Another tricky angle is: it’s very difficult to put words to deeply multi-factor truths like “well, I used to be really, really, really tired all the time and now I’m just really, really tired all the time; I’m both ecstatic for this progress and yet still have so far to go; I’m also terrified of losing this progress, getting worse again, and not having enough support to stay alive”. It’s like being in a horror movie and you’ve managed to run out the front door of a haunted house but a monster grabs your ankle and is trying to pull you back in. You’ve at least made it to the front steps, you can taste freedom, but these bastard monsters sure as fuck aren’t going to make it easy for you. You’re not really free yet, and in fact it’s still quite scary at the moment.

But let me try to tell you how I’m doing anyway.

Since June of 2025, I have not had a full-bore ME/CFS crash day. By that I mean having whole days where I am so dangerously metabolically compromised that my body is telling me that any movement—or any excess thought!—may put me at risk of possibly fatal metabolic collapse. (One time I had a doctor’s appointment where I typed in the Zoom chat box the whole time instead of speaking because my crash was that bad.) I used to have crash days somewhat frequently, perhaps a few times a month, sometimes more in really sick times. Instead, since last June, I have only had two or three days where I felt about 50% of what an ME/CFS crash used to be for me, and it burned off by mid-day or early afternoon. That’s it. I cannot tell you what a relief it is to know that even when I slightly overdo it by accident, that I won’t have to spend the whole next day fearing for my life. There just aren’t words to describe it.

Since mid-September of 2025, I’ve been able to drive myself to all my medical appointments again. This is a huge deal. There’s been a few really sick days here and there where a friend has given me a ride when I haven’t been well enough to drive myself, but like 95% of the time, I’m driving myself. Since October, I’ve managed maybe 2-3 short walks per month—this progress is a bit more spotty and fledgling, but I hadn’t been for a fun walk at all since Nov 2023, so it still feels pretty exciting. In the past month or so, my muscle molasses (that draggy resistance feeling) has honestly gotten like 50% better—my muscles now, possibly literally, feel halfway normal. (But again, please remember: half of major suckage is still pretty sucky.)

What are the still-existing downsides? Well, I continue to have MCAS attacks that land me in the ER or even necessitate calling 911. That royally sucks and is a source of omnipresent background unease. My energy levels are still not such that I can 100% independently care for myself around the house. Although it’s better than it was some months ago, I still rely on help from friends to keep me caught up with laundry, dishes, taking the trash out, etc. And with the bit of newfound energy I do have, I’ve mostly had to spend it catching up on a year-plus of delayed life admin, and haven’t been able to spend much of that energy on catching up with friends again yet. I hope that changes soon; I’ve got a lot to finish before my energy budget frees up for more fun stuff though. I quipped to a buddy the other day, “you know the sort of excitement you feel when you get a new washer and dryer?, that what it’s like having more energy but needing to put it to stuff like going to the DMV and doing taxes”. And then there’s a host of other weird, unpleasant, and unpredictable symptoms my treatment has been causing, but that’s a whole other can of worms. My day-to-day is still a real slog.

What do I attribute my improvements to? Honestly, I think my illness this whole time has been Lyme and co-infections, specifically bartonella and babesia. I think I’ve probably had them since I was a kid, dormant for the most part, but a bad residential mold exposure in my late 20s (and again in my mid-30s) really kicked these infections back up, most likely. It’s hard to know anything with certainty with these illnesses, but using this as my working hypothesis and focusing on treating Lyme has been bringing me the most sustained gains I’ve had since becoming big sick in Dec 2020. I started working with a Lyme specialist last spring, and have voraciously read the Buhner books on bartonella (et al) and babesia (et al). I’m doing a combination of treatment recommendations from my provider, and rolling my own protocols from the Buhner books.

I’m also continuing to work with a functional genomics naturopath, who helps with reducing inflammation and generally helping right my body’s various compensation cycles—this has been helping me tolerate Lyme treatment better, contributing to a virtuous cycle. I’d love to write in a bit more detail about all this sometime, but this is already approaching full blog post length so I should probably wrap it up here. But before I do that, I would be remiss to not also point to the love and care I’ve gotten from a very good friend I made in 2025. This is an ex turned best friend, and our relationship has had the sorts of bumps you’d expect from such a transition, but we’ve ended up in a good place. I would not be doing as well as I am today without their support. Everyone who is sick like me deserves a ride-or-die friend like that. If you have sick friends in your life, consider playing a bigger role in supporting them. There’s a lot of need out there.

In short, I got almost none of my 2025 goals accomplished in 2025, because I was Very Fucking Sick. Even my bedtime continued to be rather trash, and I didn’t manage to pull the average earlier than 11p. But the one thing I managed to do last year is maybe the most important thing of all: finally pushed for treatment of the root causes I suspected all the way back in 2018 (but no doctor wanted to listen to me), and am perhaps actually starting to get better. I don’t know how much better I’ll get, but it is possible I may partially-but-meaningfully recover from an illness I’ve had for a very long time. Maybe 2025 wasn’t a wash after all, maybe it was just the end of a somber second movie in a trilogy.

I’ve got goals for 2026, but instead of talking about them beforehand, I just want to jump in and get started. We’ll see what this year manages to hold for me or not as it unfolds. There’s not much point in planning with a body like I still currently have; you just have to put one foot in front of the other each day and hope that someday that amounts to something. It sucks, I love planning. But isn’t this sort of what everyone deals with to a certain degree? The future is never guaranteed, you never know for certain if you’ll ever see the fruits of your labor. Or if your labor will ever even bear fruit, whether you see it or not. How do we keep going, keep building, despite that reality? I suppose that’s the central question of 2026 for me. We’ll see if I can answer it.