2026 Update

♿️ Accessibility: The video above is audio only

It’s very hard for me to write this right now, my mind is lost to me in a cloud of haze, dull fog and strong migraine auras, like my brain is a watterlogged sponge constantly spinning on a wheel. But I know a lot of you are wondering why I’ve disappeared in 2026, and right after a rather exciting video post about talking again.

I know I don’t owe the community an explanation, we all understand that if someone goes a bit quiet, it’s ME/CFS and they’re crashing or something else medical related is going on. (it’s important to establish this with all your friends by the way - that there is no pressure to respond and if your friend doesn’t respond, you’ll always assume it’s because they’re just too sick to). But I always want to try my best to stay connected with you all and contribute something to our collective mindstream when I can.

I had a very serious medical incident happen right after posting my last video about talking again and have been through a lot. I’ve made a video update about it, or several actually, but haven’t been able to get them ready to post. So coming soon!

Im ok now, I’m recovering and my body is going through “growing pains” or maybe more accurately “healing pains” adjusting to new meds and a possibly long healing process.

Lately I’ve been sleeping 12 hours a day and waking up to strong migraine auras along with brain fog and trouble focussing that have left me staring into space or with my eyes half closed listening to ambient music or on better days, Scandanavian slow jazz all day and barely able to tolerate the sound. (But kind of forcing myself to because I refuse to give up on music. It’s one of the few things I got back after Abilify in 2020) And doing nothing, I can’t seem to work on anything or do anything beyond barely taking care of myself (often with a shit load of will power; Brushing my teeth can feel like climbing a mountain not to mention all the other meds and routines)

The video here in this post is what I look like most of the time.

I’m ok, we all have these setbacks. But they are so hard. Getting worse sucks. You can quote me on that. 😊 I keep making plans based on my current health and then my health (and thus energy limit and ability to do things) changes and chaos ensues when I can’t meet commitments I’ve made. It’s devastating because those commitments are all stepping stones towards bigger dreams that I want to make happen so badly.

Right now I’m just going to batten down the hatches and weather the strom and hope for the best. That’s often the best we can do, and really it’s a miracle if we can achieve that given how the cards seem relentlessly stacked against us at all sides.

You know, one thing I’ve been thinking about is just how F’ing hard/rare it is to get better with ME/CFS and how easy it is to get worse, or way, way worse into terrifying hell realms. There are millions of things I could do right now that would make me worse and which I have to avoid or moderate or handle with extreme restraint, but I don’t know of anything that would make me feel better; I know of things that keep me stable and not get worse or get less worse, yes, but improve? I don’t know of anything. I work so hard with my routines and meds and supplements just to try to stay afloat.

And that is so hard to live with. Putting so much of our energy into avoiding hell, into trying not not to get worse. Always rowing, but never getting anywhere because the current against us is so strong. Living surrounded by land mines and nothing but desert for miles.

But I remember the trees, I remember the light and I will keep fighting forever to feel it again on my face.

I appreciate all of your well wishes, but please, there are so many of us having such a hard time right now, please send them to someone who is struggling and sicker than me. I’ll be ok, this is not meant as a plea for help, there are others suffering so much and I would want any prayers/wishes/energy sent to them. 💙

Love, Whitney ❤️

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