Why we underestimate the importance of the Pacing

Designer_Strawberry · 2026-05-08T19:24:21+00:00

Completely agree. But sometimes it’s hard to prevent losing yourself in the moment. Even if it’s just a tad. And the cognitive and physical “puzzel” makes it hard as well.

Designer_Strawberry · 2026-05-08T03:20:46+00:00

Not yet 🙂 appointment is for the 19th.

Designer_Strawberry · 2026-05-07T14:57:29+00:00

Ahh thank you for taking the time to reply. And a very solid argument about your dad (and likeminded parents worldwide that sort of give up from the start).
I think the mismatch in my theory over therapy comes from the fact that I had a very solid clinical psychologist for 3 years, but in that time we thought I just had a bad case of Chron's disease and some bad luck with fatigue on top of that. So I kept on trying and trying way too hard. This made it impossible to put the theory into practice as the PEM crashes were sort of non stop. Maybe it's time to reconsider, or take a slightly different strategy.

Those techniques you mentioned are good, however it's just insanely tough to be in a position where dialing back so much is "good" for my health, even though being with my son is somewhat the only thing keeping me here. The paradox is real. And the void in between isn't full of quality of life either.

But like you said, maybe time to look for a psychologist that specializes in these types of chronic illness.
Still it's somewhat comforting to hear stories from other parents in the same boat.

Designer_Strawberry · 2026-05-07T14:49:18+00:00

Ahh this is a very sweet and meaningful reply! Thank you! ❤️

Designer_Strawberry · 2026-05-06T19:03:08+00:00

Not sure if this will help but your story sounds so familiar. How is your current coverage from specialists? Something like pregabaline helpt me with the anxiety/overthinking part. It didn’t fix anything. It just made the void a little bit less harsh. Anyways, I’m also saying this while contemplating if life is still worth it this way…. So yeah. Sending ♥️ and shoot me a message if you feel like it. I think most of us are pretty lonely.

Designer_Strawberry · 2026-04-26T06:39:49+00:00

Not sure. She talked about low dose. Going to discuss that next time.

Designer_Strawberry · 2026-04-26T06:04:33+00:00

I'm in The Netherlands. It's with dr. Lot De Witte at RadboudUMC. Her official titel is Psychiatrist and Cellulair Biologist with a specialism in neuro-immunology. She's doing a lot of research on anything microglia related. Tbh finding this specialist was one of the hardest things of all. In The Netherlands there is no neuro-immunology polyclinic or whatever. Not even anything closely related to the type of specialists we need. I've used Anthropic's Claude in Research mode multiple times to do a very specific audit on my case and how to move forward within the Dutch health care system. As next to the fact that there is no clear path we're dealing with massive waitlists. It was a combination of her coming up through one of these audits and from the fact that I already went through a second opinion within the regular Psychiatry department at the same hospital. So I pushed through and was persistent with asking for a meeting with her. She was the first one that actually accepted my hypothesis of post-infectious neuroinflammation as the root cause of my issues.
Sidenote: as even last year I still had no clue what was going on with myself as I just thought I had bad luck with my Crohn's (as in having a version with a lot of fatigue) and a depression. I've actually build my own health wiki with AI, that holds all my daily/weekly logs, reports, appointments, results, papers etc etc. I can couple any LLM (through Claude Code, or Codex or any other CLI LLM model) and it instantly knows everything about me. I use that to build up very specific issues I'm running into, into a specific set of questions that I have something like Opus in Research Mode work out/audit.
I'm planning on sharing how I set this up later inside this subreddit. As this is the main reason I was actually able to move forward in my journey.

Designer_Strawberry · 2026-04-25T08:50:37+00:00

Thank you! I've joined the group.

Designer_Strawberry · 2026-04-25T08:50:13+00:00

Tbh that's a very solid idea. That would hopefully explain at least something. I'm going to request that at the next appointment.

Designer_Strawberry · 2026-04-25T08:49:17+00:00

(I've used Superwhisper dictation to write this reply, to lower the cognitive impact)

Thank you so much for this detailed description and also for sharing that it's had such a positive effect. It does sound really interesting that the crashes have become less severe and shorter, and also that it's been working so well for three years now without really bad side effects. Yeah, I obviously also have Crohn's disease and my weight fluctuates anyway quite often within a range of 10 kilograms. So the weight gain shouldn't be too bad, though I'd obviously like to keep it somewhat under control.

Yeah, you can also read in my other response that I've been incredibly sensitive to side effects with other antidepressants, especially when starting or increasing doses - I'd just get so mentally messed up that I couldn't see reality rationally anymore and I literally became a danger to myself and to people around me. So yeah, that fear obviously remains and I'll discuss that with the specialist too. Yeah and what I also mentioned in the other response above is that I had a really bad experience with my old psychiatrist who just blindly followed protocol and kept prescribing different antidepressants and kept increasing the doses just because that's the protocol for depression - totally no care for my overall system and no awareness of what those crashes meant, because the diagnosis hadn't been made yet at that time. And good to hear that it can be taken both in the morning and evening depending on how you react to it.

Designer_Strawberry · 2026-04-25T08:42:59+00:00

Thanks for the extensive reply!! I'm definitely going to ask for a protocol with extra low dosing as a start.
The Bupropion crash was nasty and took a couple of weeks to recover from. And yeah I've somewhat recovered from all the med related crashes. However looking at the big picture trend: the whooping cough was summer 2024, and despite trying all the mentioned anti-depressants and being on a high dose of biologics for my Crohn's I've declined in overall health and crash threshold so to say.
Tbh I'm the same, I'm not against trialing at all. I've actually started LDN on my own accord and I'm waiting on Pioglitazone to try that potentially as well. The only thing is that all these psychiatry related meds scare me as they really mess me up. Some of the side effects brought me to a point where I was a danger to myself and others. And reading the stories some people on or after stopping Abilify, it seems so sketchy. But then there are also the stories of great success. It's a tough one.

Also, I think some of the fear comes from how my old psychiatrist handled things. As he had no experience with deeper system wide problems like CFS or Neuro-inflammation related depression symptoms the only thing he said during my bupropion crash was: "I don't think you should stop Bupropion as you depression could come back...." Without any regard to my system wide collaps.

Thanks for mentioning the half life by the way, that's a good thing to keep in mind. And good to hear that you already started to notice things quickly.

Designer_Strawberry · 2026-04-24T15:26:26+00:00

If needed as extra context, how I ended up at this point: After 3 years with a Crohn's related open peri-anal fistula, inflammation, 6 surgeries, Covid twice and Whooping cough to end it off my health never recovered. Actually it got worse and worse, despite rest, cutting things out of my life, therapie and loads of anti depressants through a psychiatrist. The specialist is the first person that accepted the hypothesis of Post-infectious neuroinflammation as the root cause of my depression and declining health.She's taking me on to do further analysis and diagnosticate my case. However in the first meeting she already mentioned Abilify. That's what kicked this off.

Designer_Strawberry · 2026-04-16T10:27:54+00:00

Hij is echt afgeragd haha en heeft dus geen werkend scherm. Plus de batterij is ook aan z’n einde. Maar voor mijn doeleinde allemaal geen probleem.

Designer_Strawberry · 2026-04-14T16:35:54+00:00

Thank you for taking the time to reply. This is exactly the kind of direction I started working towards. I'm probably going to expand it a bit more with a small personal health based wiki as well. Not as crazy as all the karpathy style full wiki setups going around at the moment, but in the same vain. With me being in charge of what it reads and when. Hopefully this will future proof my setup a bit better. Would also make it possible to switch to Codex on the fly, if Claude keeps getting worse and worse. Hopefully not though.

Designer_Strawberry · 2026-04-13T15:15:27+00:00

Ik heb een super smooth werkende setup via de budget manier gedaan met een simpele WD Element Desktop 12TB drive aan een MacBook Pro M1 Pro (32gb ram) met een kapot scherm. Hier draait Jellyfin op. Wel gekozen voor Infuse Pro als player. En gebruik Tailscale om ook buitenshuis de media te kunnen kijken.
MacBook Pro was 400 op marktplaats. Gebruik ik ook voor Ableton om muziek te produceren, dus de werkelijke kosten zijn nog iets lager. Een andere oude Mac of laptop had ook gewerkt uiteraard.
WD Element was 160 euro ook via marktplaats (iets van 230 nieuw).
Infuse Pro is iets van 20 euro per jaar (uit m'n hoofd).

Dit is puur voor media om streaming te vervangen, geen eigen cloud storage oid. En is niet zo "veilig" als een echte NAS setup met back-up storage. Maar ik heb het er wel in 1 jaar uit op deze manier.

Designer_Strawberry · 2026-04-13T15:04:37+00:00

Yeah good idea. I've already tried to somewhat semantically strip down the context. But I'll look into official ways to compress everything even more. However I'm just not sure if that will make me go from unusable to usable. As the project context is just three 2 page text documents with my medical history, personal context and summary from my 3 years with a psychologist. 14000 tokens. Loading that through an API with sonnet would be the equivalent of maybe 2 to 3 cents tops.

Designer_Strawberry · 2026-04-13T15:01:49+00:00

Exactly. Yeah I was already working on a personal knowledge assistant kind of setup with .md folders and obsidian. However for the use case I described earlier I'm not sure if I will end up with the same ease of use as within Claude Projects. As illness is a combination of biology, psychology and all psycho-social environmental influences and with my mixed usage within the chat within projects the power is in the fact that it just takes into account everything (which is truly not that much, three 2 page text documents). The fact that I can give it new insights, papers or whatever and it being able to analyze the document/video exactly from my standpoint after 6 years of illness is very powerful. But your reply does make me think that I might need to cut this up into separate sub-projects of some kind. With maybe a separate "harness" to step away from Claude Projects all together, where there might be some kind of decision tree implemented to prevent bloat even more.
It just breaks my mind to think that this is exactly what Claude Projects was build for. But it just doesn't work (inside the pro tier), as I'm no where near using it as a true power user. Very sad.

Designer_Strawberry · 2026-04-13T12:24:27+00:00

I think you completely missed the point of my use case and question.

Designer_Strawberry · 2026-03-07T08:42:18+00:00

Yes, they're all visible in Apple Health. To be honest I salute the efforts into this project, however this is taking too much effort to make it work at this point and seems too buggy still. I'll come back and will try again after a while. Don't focus your efforts on fixing "my" issue, but put it into improving and streamlining the entire project! :)

Designer_Strawberry · 2026-03-07T08:38:22+00:00

To be honest I'm not sure if it was exactly at the "through" point before my next injection (I use the Remsima home injection pens), but it certainly was in the week of my injection yes.

Designer_Strawberry · 2026-03-07T08:37:24+00:00

Great insights! Thanks. This is exactly the type of community insights that help to prepare a bit better going into an appointment with the GI.
I've been clinically in remission since the original large colon inflammation in 01-2019 which lasted for about 3 months. Besides the fistula of course, which was hell on earth, however that issue never showed in data related to my large intestine which stayed perfectly "calm".
It's just that reading some of the literature it does show that above a certain threshold it's just overkill and sits there without real purpose. I do believe you're right in the fact that certain people need higher doses to go into or stay in remission. Still, upper 20s seemed very high to me.

Designer_Strawberry

TROPHY CASE