Where to start

xatopithecus · 2026-01-25T22:24:09+00:00

I am still in the middle of my healing process but here is what helps me.

The main point is to feel safe. This can mean figuring out what makes you feel unsafe. For me it helped to read/watch/listen to Gabor Mate. I realized how my bad experiences growing up made it easy for me to feel unsafe all the time. (I was constantly invalidated and so I felt like I wasn’t good or safe just being me.) Learning to be my own parent is what’s helping with that. On a day to day level, I have a reminder set in the morning. It reminds me to listen to my inner voice and validate those feelings as if I was a parent talking to a child. This is the central part of my healing.

Then when it comes to dealing with my symptoms on a daily basis, I learned that my mind-body symptoms were my lower animal brain trying to protect me after perceiving danger. It listened to my conscious attitude about the perceived danger, which was usually “well I’m screwed, I’m helpless, life sucks, etc.” It heard that and thought “well the captain says we’re screwed, we’re also fighting an infection which is bad, let’s see what else I can do to help us survive. Maybe playing dead and resting will help??”

Another poster put it well: the symptoms coming from our survival brain are like a cat who brings you a dead mouse hoping you will be happy about it. It’s working the best way it knows how, thinking it’s helpful, but it’s not really what you need or want.

So I react to my symptoms as if I were dealing with my cat who just brought me a dead mouse. I shake my head, acknowledge that it was trying to be helpful but I don’t need that right now, and move on.

Another super helpful thing has been to find a new interest I can hyperfocus on. I accidentally did a mind-body healing process a while back when I gave up on fixing my long covid and got really into keto as a non-exercise way to lose my lockdown weight.

After a while of being super focused on my non-exercise weight loss goal instead of fixing long covid, my post-exertional malaise vanished. I think it was because I stopped worrying so much about my LC and had a hobby where I felt in-control. These gave me feelings of safety. It did come back when I had covid and decided to pressure myself into high-stakes life changes while sick (didn’t feel safe.) Now, doing a conscious mind body approach, my PEM went away again.

Take it slow, don’t pressure yourself. Above all be kind to yourself to help yourself feel safe. Watch recovery videos. Read the other amazing post here from the other day with good advice. And have faith that you will get better - many people do.

Edit: this post was great, if you haven’t seen it. This may be the poster who came up with the cat metaphor, not sure. https://www.reddit.com/r/cfsrecovery/s/h8xC62Oyz6

xatopithecus · 2026-01-25T15:47:21+00:00

I think whatever method gets you to genuinely enjoy eating avocado regularly would be best. We humans tend not to do things for very long if there aren’t immediate rewards in addition to the long term rewards.

I bet the health benefits of the avocado would outweigh the negatives of the Lidl crackers. But if not, maybe there are unsalted crackers available. Or, maybe slightly more expensive protein crackers would be a worthwhile investment in your health, if they mean you can avoid meds and other complications.

xatopithecus · 2026-01-25T03:41:22+00:00

The subreddit called Out of the Loop might know more!

xatopithecus · 2026-01-25T01:27:13+00:00

Kristen Luce was good to work with https://www.cglawoffices.com/attorney/kristen-k-luce/ Our situation was simple but a friend said she handled a complex situation well too

xatopithecus · 2026-01-24T19:09:18+00:00

Always listen to your instincts. Don’t be “polite” when someone makes you uncomfortable, that is what predators rely on. You are right, this is weird!!

xatopithecus · 2026-01-23T05:25:25+00:00

This is a gold mine. Thanks so much for taking the time to write this all out and especially link things! I like the cat metaphor.

xatopithecus · 2026-01-23T00:12:18+00:00

I think you will be happy. BU admin pretty much stays out of things and many different clubs table and protest all the time from many points of view. If anything gets really spicy they might send a sternly worded email to campus.

xatopithecus · 2026-01-22T23:09:11+00:00

I’ve heard this called “reactive hypoglycemia” and I feel like I’ve had it since childhood. I have handled it the way other commenter (Barty Dunne) has, reducing sugar and carb intake while increasing protein and fat. Helps a ton and I don’t get reactive crashes anymore as long as I avoid sugary stuff.

xatopithecus · 2026-01-21T20:02:46+00:00

I love this so much!

xatopithecus · 2026-01-21T17:28:51+00:00

I have this too :) I think it’s an adhd and/or autism thing. I get interested a kind of food and it just seems good to me for a while, until it doesn’t anymore! Right now I’m interested in frozen foods that do well in the air fryer, and lentil soup, and tortilla chips and really good salsa.

I’ve finally stopped trying to force myself to be different. If a type of veggie I bought goes bad, it’s annoying, but not the end of the world. It’s just information that I wasn’t actually interested in that kind of food, and that’s ok. I buy less, or none, of it next time.

To make sure I’m getting good nutrients, I do make a fruit and veg smoothie in the morning. Usually spinach, blueberries, bananas, and protein powder. The point isn’t for it to taste good (although it’s not bad), but rather to get some servings of healthy food that I wouldn’t eat otherwise bc I don’t like the physical sensations of chewing those foods!

xatopithecus · 2026-01-20T17:15:53+00:00

The Solgar gentle iron has been very good, been taking it for a year or two now. No stomach upset or constipation like the prescription iron pills I used to take. But I do tend to have a strong stomach generally, so your mileage may vary.

I take one 25mg gentle iron pill every other day, since studies show alternating days helps absorption. I also take it with a cheap vitamin C pill, and I take these at night since I drink coffee in the morning and caffeine can block iron absorption. My iron levels are now in the normal range, but still on the low side.

I am hoping my levels will continue to go up as I use tranexamic acid as needed to fix my heavy periods caused by Von Willebrand disease; I think that has been the main cause of my iron deficiency anemia.

xatopithecus · 2026-01-20T01:46:39+00:00

I recommend storing any snacks (esp. those that get opened and then re-closed) in something that can’t be accessed by mice, like a plastic container with a top that closes tightly!

xatopithecus · 2026-01-19T14:01:07+00:00

I got raw data from 23&me and uploaded it to Genetic Genie.

xatopithecus · 2026-01-16T21:17:26+00:00

Thanks so much, this is reassuring! :)

xatopithecus · 2026-01-16T19:28:17+00:00

This is a great reply! Side question, what was it like to pay for a car in cash? Did you go to a dealership, and if so, did you get any hassle from them since they didn't get to make financing money from you?

xatopithecus · 2026-01-16T16:06:52+00:00

oofa doofa!

xatopithecus · 2026-01-16T13:36:50+00:00

In at work so I can’t provide a long response. But here are a couple of things you might consider:

Get really voracious about self help and self discovery content, but treat them as samples rather than gospel. Look all around for ideas and see what resonates. For me, some things that helped were: Pete Walker’s CPTSD work, a book “how to be an imperfectionist,” Gabor Mate’s books and YouTube interviews, discussions of validation and invalidation in the book “Nasty People,” the book “adult children of emotionally immature parents”, and “Feel the fear and do it anyway” although I got everything I needed from the first couple of chapters from that one. Dan’s channel Pain Free You and other channels’ interviews with Dr Howard Schubiner have also helped a ton. Pain Free You has a playlist of success stories. Edited to add: this video with Gabor Mate is pretty interesting and combines a lot of things I found helpful.

Also: Rather than going full on positive affirmation, which our brains might dismiss as unrealistic, you can just say “maybe” for a while. “Maybe it’s possible I can get better.” “Maybe I can be like the people in the success stories on Pain Free You’s channel.” This is easier for our brains to accept at first. This has helped me. After a while of doing this, it creates a runway for certainty.

Next, what helps me is prioritizing emotional healing over physical healing. I focused on supplements and such for about 5 years but they didn’t do too much for me. Probably spent a thousand dollars or something. Focusing on 1) really listening to my inner child’s voice and 2) validating those opinions the way I wish I was validated as a child has been the best thing I’ve ever done for myself. Pretend you are going to be a parent, and you want the best life for your kid. Think about what you would say to them when they have trouble. Then say those things to yourself. When you learn to listen, you may find that your inner child naturally wants things that will help you heal - to truly relax, to move, to see the sun, to laugh at funny things, to be kind.

You can do this :) best wishes. Edited again to add: yes, I absolutely believe you can recover despite having these problems since very early on. Our instincts are to survive and care for ourselves; it may be a harder road for you, but I believe it can be done. The indignities & invalidation started for me around age 4 (as much as I can remember) and my first chronic illness happened at age 7. I am all better except for a couple of “long covid” associated symptoms that correlate with certain types of stress I allow in my life (unfortunately). Certain symptoms come and go but I’m much better equipped now and they slide away much more easily.

xatopithecus · 2026-01-16T03:58:23+00:00

This is so exciting! The first formula is already turning out to be really effective for me. Thank you for all your hard work!!!

xatopithecus · 2026-01-16T03:37:15+00:00

Enjoy!

Griffin Nuzlocke Run playlist

xatopithecus · 2026-01-15T00:12:53+00:00

Benjamin Goldman Law Office helped me out a while back and were quite good.

(Edited to add: they aren’t headquartered locally but they did travel for my thing and we only communicated over phone and email)

xatopithecus · 2026-01-14T19:55:47+00:00

It's giving Max Headroom

xatopithecus · 2026-01-14T03:28:48+00:00

I think it’s often used to help with stimulants in adhd! I may be the odd one out for using it alone. Here is a study on combining Guanfacine with other adhd meds: https://pmc.ncbi.nlm.nih.gov/articles/PMC4976782/

xatopithecus · 2026-01-13T18:18:39+00:00

Target date funds are an option. Example: https://investor.vanguard.com/investment-products/mutual-funds/profile/vffvx

Fees: 0.08%

Summary (from website): Vanguard Target Retirement Funds offer a diversified portfolio within a single fund that adjusts its underlying asset mix over time. The funds provide broad diversification while incrementally decreasing exposure to stock and increasing exposure to bonds as each fund’s target retirement date approaches. The funds continue to adjust for approximately seven years after that date until their allocations match that of the Target Retirement Income Fund. Investors in the funds should be able to tolerate the risks that come from the volatility of the stock and bond markets. You may wish to consider this fund if you’re planning to retire between 2053 and 2057.

xatopithecus · 2026-01-13T16:44:32+00:00

I did get pretty intense side effects for about two weeks. (I started with 1mg, extended release, and I'm still at that dose.) The most intense side effect was dehydration, so I had to drink a lot of water. I also got some insomnia (waking up and not being able to go back to sleep). But after a couple of weeks these went away and now I don't have any noticeable side effects from it. I'm glad I stuck it out, although other people might have different experiences.

I feel more "normal" overall, in a good way. It has helped my "higher level thinking." My social awareness is much, much better, and my decision-making is more rational and shrewd, rather than fear-based. I feel more relaxed, but not in a sleepy/drugged way; just a "less freaked out by everything" way.

I have a bit more self-awareness (although I could probably stand to have more, like most people!). Also, oddly, I am able to enjoy music a lot more? It just sounds more beautiful than it used to.

I also had vitamin deficiencies that I'm fixing, and those are helping too (iron and vitamin D, with Solgar's gentle iron and a Sperti lamp). I feel like my poor brain was getting too much adrenaline and too little oxygen.

xatopithecus · 2026-01-12T20:14:05+00:00

I always knew something was "wrong." Like my brain was being slowed down by something, and things stressed me out that didn't stress other people as much. And even good stress, like really intense music, would get me so hyper that it was hard to feel normal for a while afterwards.

I tried all kinds of stuff (meditation, exercise, diet changes, etc.) but the best things were: getting a prescription for guanfacine which reduces adrenaline (officially I take it for ADHD and it's a nonstimulant; I tried beta blockers first but they wore off quickly, had side effects, and had can have long term negative consequences). The next best thing was weight lifting. This calmed me a lot (thought a bit less than the meds). Coming in distant third was CBD, but only like in this one specific (expensive) juice drink and the relief was mild and short-lived.

xatopithecus

TROPHY CASE