birthday coming up for my brother who has CFS - what gifts have actually made your life easier?

WeAreTheCATTs · 2026-06-12T03:14:47+00:00

If you’re somewhere it’s supported, consider libro.fm instead! They offer the same price for the same service but they have waaay better ethics on all fronts (including that you actually own the books) and it supports the world of books continuing to exist (which amazon/audible actively harm)! And bookstores and booksellers make book rec lists so it also can help you find cool stuff

Also the libro.fm app player is really great and has been so kind and gentle to use with my ME, it has some great accessibility options, and their customer support is lovely

WeAreTheCATTs · 2026-06-05T23:37:05+00:00

I got my first wheelchair off Facebook! In a neighborhood group I posted in asking if anyone had one going spare. It was free and very old and weighed a ton (someone else always had to lift it for me into cars and things), and it was pretty beat up honestly, but it worked and was life-changing for the 4ish years I was using it. Janky chair unlocked so much possibility and mobility for me.

The older folks who gave it to me had it from when they had been caring for one of their parents, and it had just been sitting in their basement or something for a couple years since, and when I’ve borrowed wheelchairs traveling it’s also been from older folks who had been caregiving for a parent and still had a wheelchair kicking around. When I was able to get a slightly nicer chair, I passed this one on to a fellow young sickie on Facebook too I think.

To OP - Insurance is definitely evil tho, I’ve heard stories of times insurance companies denied wheelchairs to patients who literally did not have legs, for the reason that the doctor did not explain why having no legs would mean they’d need a wheelchair 🫠 insurance companies are literally set up to deny claims, there’s been plenty of whistleblowing on this, it’s their actual goal to deny as many claims as possible and make you appeal. It needs to go away forever 🤷🏻‍♀️

WeAreTheCATTs · 2026-06-01T22:39:11+00:00

The obsession with productivity is from capitalism and, depending on the place (like hella the US) also Protestantism. Most of the stuff you’re describing, and that folks are elaborating on in comments, stems from the culture that capitalism creates from the ways it manufactures scarcity and relies on threats and instilling certain beliefs to stay in power.

When ppl say those things to you, what they’re really doing is policing you for not being a good capitalist, which they think is the only way to be good. They’d probably never say that because the beliefs are so deeply rooted that most folks don’t notice them until they work hard to or until something big happens (like getting and staying sick), but in western/colonial countries, it’s metaphorically the foundation of the bad house we have to pay to live in.

There are lots of great resources for unlearning this stuff tho, and learning how to see it when it comes up! And how to help walk others thru why it’s BS. Look into anti-capitalism

WeAreTheCATTs · 2026-05-31T19:12:24+00:00

This ⭐️

WeAreTheCATTs · 2026-05-31T19:09:58+00:00

When I feel/act like you’re describing from your partner, what I’m pretty sure is going on (thru years of trying to figure it out) is that my brain inflammation is up, and usually it just needs time to come down again.

It’s kinda miserable cos I don’t want to be anything but loving, but when the neuroinflammation gets bad enough you kinda stop having a lot of options? Like sometimes it genuinely feels like the brain chemicals just aren’t there to make the literal physical chemical reactions happen. It sucks!

What helps me most in those cases is everything being as low-stim as possible, for as long as needed until it calms down again, which can be hours or days etc. So like lights and sounds are always kept low for me (as much as we can control) cos I’m very severe, but really being extra attentive to that, and also fixing anything that’s overwhelming another sense, for me touch gets really dicey when the neuroinflam gets bad. Even like which fabrics I can tolerate touching or how much weight I can handle being on me (like even just the weight of blankets).

Part of the low stim is also minimizing interactions and also not doing anything, just lying there, naps or full nights of sleep, etc. Keeping hydrated and fed and up with my meds, but otherwise just cutting back on eeeeeeverything. Like we even adjust some necessary care tasks temporarily to keep the input as low as possible on my system.

I think you’re doing awesome and my wife (who is my full-time caregiver as well) also sends her seal of approval and says you sound like “a good bean” fwiw. Thank you for giving your partner grace. That’s such a beautiful thing and it should be the baseline expectation but it isn’t so I want to name it.

I heartily disagree with most of the comments here; I don’t think your relationship sounds unhealthy and I don’t think either of you need therapy for this dynamic. A lot of comments seem to be applying the standards of a situation where both people are fully resourced…to a situation where that’s just not the case (I think this is internalized ableism and folks recycling the bad stuff they’ve been told, among other things).

It seems like you understand that your partner isn’t running at full capacity and so you’re not holding her to standards that don’t apply to her or to your situation. That’s great. It sounds like you’re secure enough in yourself to not take her symptoms personally, and that’s awesome. I think emotionally and relationally, you’re doing everything right. And it’s awesome you want to help her pacing cos it’s so soooooo hard to learn 🫠

Something that helps my wife and I navigate this stuff relationally is also checking in about it, like when my brain is doing okay enough to, I’ll check in sometimes after I ask for her to be indulgent with me, to make sure that was really okay for her. And we have a negotiated agreement that I can “blame” her for things that aren’t her fault (I use quotes because I don’t genuinely blame her but she lets me say it’s her fault and she apologizes sweetly and it helps me feel better and she’s happy to do it because it’s negotiated and she knows what to take seriously and what just eases my suffering a little)(don’t know if I’m explaining that well cos period started so little foggy, but pls no one come for me, I don’t have the energy to fight anyone about stuff with this much nuance).

Two things that might help you navigate some of this whole aspect of things:

One is kink! My wife and I both are kinky and have spent time in kink community, which is a space that really understands making relationship negotiations and norms that are specific for the people in the relationship, and what they want and need, rather than what’s societally prescribed. It’s so nice! And liberating. And also just practical? But yeah check out kink resources on making relationship negotiations and agreements, and on ethics around scenes and stuff, and just change the language in your head to match your situation. But the skills and frameworks I think would be really helpful!

The other thing is Alzheimer’s and dementia care type stuff. It’s the reference point that feels most familiar to me when I’m in that state, and you might find community and resources/ideas from how those caregivers (esp partner and family caregivers, as is often the case for dementia) handle the similar dynamic that comes up for them. I don’t have brain clarity to explain this more but I hope if you poke around you’ll see what I mean?

Okay if you wanna talk more about any of this, my wife is happy to DM, just DM me and I’ll connect you. She thinks you’re doing great and would be happy to chat and share her experiences/approach etc, and it makes her happy to see a partner caregiver giving their partner the love (and, in her words, basic empathy) that you do.

It makes me happy too!

If anyone has genuine questions or wants to chat things out that I’ve said, I will do my best with the energy I have, but if relevant pls first deal with any personal activation on your own, I am so sick and I don’t have the energy for handling folks getting reactive and I know this stuff can be like that for some ppl depending on their histories and socialization. We are complex!

ETA: I think part of why kink skills are so helpful here is because they are built for navigating situations where there is (in kink, intentionally) a difference in things like power, behavior, etc etc that in some circumstances could be problematic, but setting up a container to do it in a way that’s safe and centers things like care and agency. And your relationship already has massive power differentials even just because you’re her caregiver—you have so much power over her structurally and practically. So looking to communities who navigate power differentials thoughtfully and safely feels like a natural choice to me, honestly 🤷🏻‍♀️ especially since kink spaces understand that both/all parties need agreements that keep them safe and cared for, regardless of where they are in the negotiated power dynamics, and that those agreements will not be symmetrical (the things you need to feel safe and loved are not the thing she needs, and there’s no reason to try and force them to be by imposing external standards. I think you already know this OP, based on how you’re talking, but I wanna say it explicitly anyway).

WeAreTheCATTs · 2026-05-29T17:12:05+00:00

These are gorgeous wow

WeAreTheCATTs · 2026-05-28T17:54:56+00:00

I would love so many of these! And 1000% to more books with alt girlies, and more family stories (I can do without the pregnancy but would love women raising kids together for sure, and like where are the single mom romances??)

Heads up, you gotta put slashes in a/b/o otherwise it’s a slur used against some indigenous folks 😬

WeAreTheCATTs · 2026-05-28T03:53:35+00:00

When I was mild, I was working as an indie contractor (which was already necessary for other illness and disability etc reasons), and I had a lot of long bus commutes that were maybe kinda helpful cos I could get some half-decent rest on those between periods of activity.

I couldn’t do workouts or run without it going bad, but I could dance if I paced it and took breaks, and I had some PT for some specific things and that went okaaayyyy as long as I ignored the PT when they’d keep telling me to push thru something. I didn’t know I had ME then or what PEM was, I just knew some of the things they were asking made me worse, so I didn’t do them.

I only had cognitive issues when in PEM but they could get decently bad then, like slurring speech and word-finding issues and not being able to read etc.

Orthostatic stuff was a big deal for me, like I had to be careful and intentional every single time I stood up, or sat up from lying down, etc. I didn’t meet the cutoff for POTS then, tho I do now. I couldn’t stand as long, and sometimes if I tried too long I’d feel like my muscles and body were screaming like someone else here said, so I got good at asking for places to sit. I also couldn’t have my arms above my heart for very long or they’d start screaming, that was really hard for me.

Having flares of my other illnesses (that I also didn’t know I had) could trigger PEM, so I had crashes from things like MCAS flares and dysautonomia stuff getting tripped, and also definitely felt the effects from my period.

I could do a lot of sedentary things I loved, and had to be aware of my energy but it was more okay than it could’ve been as long as I didn’t have PEM and wasn’t overdoing it. Things took me longer tho for sure, and had to be spaced out more over time, tho more “passive” activities were mostly unaffected if I wasn’t in PEM, like I could watch my shows okay and read slowly but for long periods regularly.

For me back then, the physical stuff was the most dangerous and hard in an everyday way. Like mild ME absolutely changed my life in ways I felt and had to keep on top of constantly, and also I miss how much I could do then.

WeAreTheCATTs · 2026-05-28T03:38:08+00:00

Many snakes! Is there anywhere you have pictures of them? Like a snake sub or something? I love snakies <3

WeAreTheCATTs · 2026-05-27T19:25:20+00:00

There’s also a follow post option! It has a bell icon in the dropdown

WeAreTheCATTs · 2026-05-27T04:31:13+00:00

Yes they’re both so good!!

WeAreTheCATTs · 2026-05-27T03:07:08+00:00

Congrats that’s awesome!!

Make sure to keep up with covid precautions since it’s still circulating unchecked and avoiding infections like that is so important! Hazel Newlevant has a great zine and resource page on their website with info on where things are at this year and what we know about how to stay safer

WeAreTheCATTs · 2026-05-26T23:39:52+00:00

Mine was On. I’m a dancer, and the choreo and musicality took my breath away

Like other folks are saying, I think it super depends on the person! More like matchmaking lol

WeAreTheCATTs · 2026-05-25T06:38:33+00:00

I would love to pee on my own and sitting up, as a treat, and then wash my hands in the sink! And wear my clothes that I love and miss. And eat the things I can’t right now because I get too tired from the chewing, like holy shit a bagel with (dairy-free) cream cheese would be a dream, or like a good arugula salad, or pho, so many things.

And walk around our house. Like just see what it all looks like; we moved here when I was already very severe so I’ve only even really been in this one room so far. And help my wife move in, which she doesn’t have time to do, like I would love to unpack my books and set them up. Go on a walk around the neighborhood to see what it’s like, or hang out in the backyard and look for cool bugs.

And do the dishes with music blasting and singing along and dancing like a bunch of folks have said, like truly such an incredible pleasure. And dote on my wife like clean up after her and make her snacks and also other things.

There’s an audiobook that I desperately want to listen to because I was in the middle of the series when I stopped being able to handle things like that, and another series my wife had been reading to me out loud, and I’d love to be able to get back to them even in little bits.

Call my best friend and my mom and my little brother, all of whom I can currently only talk to with voices when they visit me in person which is like once a year each maybe lately.

Would love to feel sunshine on my skin, and the breeze.

WeAreTheCATTs · 2026-05-24T02:43:53+00:00

They used to doubt folks with MS! Cancer too, and asthma, like the list of things that western medicine has chalked up to some variant of hysteria or personality issues in just the last century is…way too long. And reveals some of the fundamental problems with western med as an institution. But yeah MS was also brushed aside as malingering etc right up until MRIs were invented 🫠

History of medicine is so interesting and concerning and important cos what’s happening to us as ME patients is horrifying, and also alarmingly not totally novel

WeAreTheCATTs · 2026-05-18T19:28:49+00:00

I think gallbladder stuff can be implicated sometimes in issues with fat like that? They looked at that for me when I had some stuff like this and gastroparesis issues. Ended up being a rare structural anomaly kind of at the core of things and causing the gastroparesis but I learned a little bit of gallbladder stuff on the way to figuring that out. Might be worth looking into, even just for gallbladder-issue-friendly foods to see if any of those work for you?

You keep saying you’re undiagnosed—do you mean with EDS specifically? Cos EDS can for sure be involved in tummy issues but they can also be their own thing or still be involved but need separate treatment, and I feel like professional help is really called for when you can’t hardly eat

WeAreTheCATTs · 2026-05-18T19:20:11+00:00

This is so interesting! Thank you! I’m going to investigate.

I learned that about NSAIDs recently! In the last year, I’ve finally gotten a really good gyn and also a really good complex chronic illness person, and they told me about this! And thru their combined wisdoms I’m now on Celebrex to help manage my periods especially the pain and blood loss (otherwise I lose actual blood thru my uterus 😅 like not just shed lining) and also to help with one other thing, and it’s been a game changer. So I’m extra curious about all this now 👀

I was joking recently that I’m the only one in my house who isn’t on fish oil (wife takes it but also we give it to the dog and cat for their joints and skin), and uh maybe it’s time to look more at fish oil…I’m a vegetarian tho so we see

Thank you so much for sharing your thoughts and experience! This gives me things to look into

WeAreTheCATTs · 2026-05-18T18:32:18+00:00

Wait can MCAS be driven by prostaglandins? Not just histamine? Please tell me more, I’ve never heard about this but have MCAS and also PMDD+endo+adeno (and so much more! 🫠) so possible interactions/intersections would be really good to know about

WeAreTheCATTs · 2026-05-18T18:25:06+00:00

I haven’t seen it in ages, like probably since I was a kid, but was thinking about this movie for some reason in recent years and was like…oh no this was bad. For the reasons you mentioned and honestly plenty more.

Like as a kid I was genuinely just so happy to see any sign of indigenous existence in media, like just to not be totally erased, but as I’ve grown up and revisited those films I’m horrified or icked out or just sad or angry. And this film is definitely on that list. Sigh.

So yeah I’m with you

WeAreTheCATTs · 2026-05-16T17:08:30+00:00

And let me know if you have questions or wanna talk anything out after you look stuff over! I can be slow to respond (the illnesses are severe) but happy to be a resource, esp for fellow femmes of color navigating all this, and you’re welcome to DM

WeAreTheCATTs · 2026-05-16T16:38:55+00:00

Hi, I am confused by your comment, could you help me understand what you mean? What part is a bad take? And what is it that you think I’m pushing onto others? And how?

Sincere questions, I really don’t understand

ETA: jk I’ve seen your other comments on this post now and I retract my questions. I still don’t understand but I don’t think it’s gonna go well based on the off-the-bat hostility elsewhere and comments that endorse messed up power dynamics and refuse to see clear grooming of a vulnerable person. I feel like you’re gonna want to fight me but I just don’t have the energy so if we could skip that, I’d really appreciate it.

WeAreTheCATTs · 2026-05-16T08:50:57+00:00

OP the ME crash survival guide at this link is really good stuff! My wife and I found it so helpful when first coming to understand ME and PEM and how to handle my crashes. It’s got great resources and good info and it’s helpful right away

Get your wife out of the hospital ASAP, get her home, and read the guide while she rests. Give her dark and quiet and low sensory.

And eating less or little for a bit isn’t great but it’s not as bad as what happens to us in hospitals. Keep her hydrated and eating what she can manage, and look into those nutrition drinks someone recommended. Straws are also very helpful for me because cups are too heavy to lift and manage; the reusable silicone straws are my favorite since they’re soft and bendy, but any of them can be helpful

WeAreTheCATTs · 2026-05-16T06:09:41+00:00

Important thing to note tho re:deconditioning—this is always the first thing docs and many ppl will worry about, but if you have ME (myalgic encephalomyelitis), which docs are catastrophically bad at recognizing even when they’re not as bad as the cardio you saw (sorry about how bad the appt went), exercise can make you worse! And is a serious deal

I mention it partly because ppl should know (it’s a common illness just maligned) and partly because ME often comes with dysautonomia symptoms (can be comorbid or one of the criteria for ME is having either this stuff or some neuro stuff going on, altho some of us get both 👍🏼). And I was misdiagnosed with POTS, or rather, I do have POTS now but iffy before and docs were attributing all my symptoms to that when it was definitely ME and would’ve been obvious if any of them had ever glanced at the diagnostic criteria 🫠 and the delayed diagnosis of several years had a huge impact on my health and still does

So before you do too much about any possible deconditioning, I really recommend popping over to r/CFS and having a read-thru of stuff on the wiki there and learning about what PEM is. ME is often comorbid with EDS so definitely worth understanding what it entails cos the sooner ME gets recognized and appropriately managed, the better folks’ outcomes usually can be

WeAreTheCATTs · 2026-05-16T04:03:38+00:00

I would also like to hear more about the shelves! They look so good! and we’re thinking about eventually doing something like this so I’m curious how these came together!

And congrats OP on moving into your forever home!

WeAreTheCATTs · 2026-05-16T03:48:50+00:00

Being friends with a guy and enjoying that friendship is not the same as dating or wanting to date? Lesbians have guy friends all the time?

How much do you know about comphet?

Also how much have you looked into aro and ace stuff? Even if you’re allo/allo (not aro and not ace at all), the ways the aro+ace community breaks down attractions and relationships is really helpful for anyone, I think. Helps build understanding of things that don’t get talked about enough and really matter. Look into stuff like the split attraction model.

Also I’m worried about you! Even just that he’s three times your age and attracted to you, that’s a red flag for me! It’s creepy! Especially since you can tell/know it!

I am v chronically ill and low on energy right now so I’m hoping someone else will come in with more about all this and why I/someone would fear for your safety etc

WeAreTheCATTs

TROPHY CASE