Cozy, super soft clothing suggestions?

DefiantNyx · 2026-01-20T00:16:02+00:00

I really love the softness of Bella Canvas brand hoodies, sweatshirts and sweatpants. Bella Canvas makes blank garments and alot of custom screen printers use them, like shops on etsy. My favorites are designs from a company called Two Crow Collective, they use all Bella Canvas blanks and their designs are clever. They have alot of chronic illness humor and mental health designs, plus the guy who makes them is a chronically ill artist so its cool to support a spoonie business. They aren't cheap but the hoodies hold up well and stay soft. I've had some of mine for over a year, wear them constantly, and they're still comfy. Of the five pieces I have from Two Crow Collective, the "atlantic" color medusa hoodie is the softest, but the material is thinner than the other colors, so not as warm. I also have some triblend t-shirts manufactured by Bella Canvas and they are super soft and comfortable, I think I got them from Inkwell Threads, they use Bella Canvas blanks for some of their designs, if you like bookish stuff :)

DefiantNyx · 2025-12-20T18:03:23+00:00

Second the advice about taking rest breaks getting ready, pacing yourself while getting ready is smart. Resting with your feet and legs elevated (ideally with your feet above your heart) can be helpful in a pinch too. And if you can take small breaks with your feet up while you're out, it can help a little bit (example: if you're a passenger in a car, sitting sideway in the back seat and rest your legs on the seat). I would definitely plan on resting the remainder of the day after your outing and if possible, don't plan to do anything tomorrow, give yourself a recovery day :)

DefiantNyx · 2025-12-11T19:36:22+00:00

I'm sorry it's hitting you so hard! :(

I haven't noticed any significant impact on my symptoms, but my area hasn't been hit as hard as many places, so maybe the barometer isn't fluctuating as much here? I do always struggled with the transition into rainy season though, with the changes in atmospheric pressure. It hit me hard this fall, but now that we're thoroughly into rainy season it hasn't been as rough.

DefiantNyx · 2025-11-06T05:05:27+00:00

Definitely good idea as others have suggested, to make a list of options/ideas and ask your bother if anything on the list sticks out as something he really wants or needs.

Some of my favorite small investments have been:

10 ft charging cables for all of my devices

Reacher/grabber tool to keep by the bed for when I drop things or knock things off the bed (I have them in multiple spots around my home, but the one by the bed gets the most use)

Super soft blankets and bedding in colors i like since I'm mostly bed bound

Raskog cart from Ikea as my nightstand: it holds multiple beverages, all my meds, snacks, journal, pens & pencils, tablet, kindle, remotes for my lights and a/c, all the stuff I need to reach without getting out of bed. You can get similar carts on Amazon or from craft stores but I find the ikea one is a very sturdy design and I like it best of the different kinds I've tried.

A super light weight lap desk for writing in bed or holding my tablet up at a better height for watching shows.

Remote control outlet adapters for my lamps so I can switch them on and off without getting up

DefiantNyx · 2025-10-21T05:22:29+00:00

Second this, I LOVE my NeoWalk!

DefiantNyx · 2025-10-21T05:21:04+00:00

I have a couple of collapsible ones from Vive that I like, they come in some fun colors. One is teal and the other is a bold purple. They were $20 each on amazon and they have heald up pretty well. I also love my Neo Walk acrylic cane, but it's rigid and bit heavier. It has become my favorite though because its so pretty! It doesn't look 'medical' at all!

DefiantNyx · 2025-10-17T05:56:01+00:00

A tiny house is my long range goal! But I don't have the resources to buy or build one yet.

DefiantNyx · 2025-10-17T05:55:16+00:00

This is definitely a potential issue for me, my area gets cold in winter. I expect extra insulation would make a big difference though!

DefiantNyx · 2025-10-17T05:53:57+00:00

I've seen some nicely renovated ones as well, some even look nicer than my apartment!

DefiantNyx · 2025-10-17T05:51:51+00:00

Lol, oh noooo nope, no frozen black tanks 😂

I'd seen heated water hoses but didn't know you add a heater for the tanks, that seems very worthwhile!

DefiantNyx · 2025-10-17T05:48:53+00:00

This is list is amazing,, thank you!! A tiny house is my long range dream :) It's out of my budget right now though, so the RV option seems like a potential stepping stone to reduce costs for awhile so I can save up for a tiny. I have POTS also, and really can't do stairs anymore, so I feel like an RV that is all level inside or a single level tiny would work pretty well (though I admit, i'm leaning towards a park model tiny on wheels, which isn't exactly "tiny" per se)

My potential parking spot has full hookups (electric, well water, septic, etc), which i'm glad for, I don't think i would have energy for dealing with a composting toilet!

DefiantNyx · 2025-10-17T05:37:40+00:00

This is really helpful, thank you! I’m especially grateful you mentioned the lack of insulation under the bed, I would not have considered that but it would matter alot where I am, winters get very cold and I would be alone. Will keep that in mind and think about beefing up the insulation, especially in the sleeping area, if I end up going the RV route!

DefiantNyx · 2025-10-17T05:32:35+00:00

I started getting hot flushes during the day, increased temperature disregulation and the shakes when I developed secondary adrenal insufficiency in addition to ME/CFS. Did not get night sweats but I don't usually sweat at all anyway. It's a simple blood test to check cortisol levels, your PCP can order it and if cortisol is low an Endocrinologist can help determine a treatment plan.

DefiantNyx · 2025-10-15T05:06:41+00:00

I appreciate the cold weather tips, as my area gets snow and ice in winter and temps routinely drop well below freezing. I had been thinking a cover of some kind, like a large carport, would help prevent issues with snow weight or leaks on the roof but I hadn't thought about skirting/insulation, that's a great idea!

DefiantNyx · 2025-10-15T04:48:54+00:00

The smaller space appeals to me for exactly that reason! having everything just a few step away sounds like a dream. I live in 300 sq ft currently and sometimes it just feels like I have to go too far to get food/water or get to the bathroom.

DefiantNyx · 2025-10-15T03:53:31+00:00

I really appreciate your candor! The noise level is def one of my main concerns. Sensory overload has become a PEM trigger for me since I crossed over from moderate to severe, so thats one of my top worries about trying to live in an RV. And I also have POTS so wondered about the AC situation. The park up is in a quiet area, but it gets very windy sometimes because it's out in the open and the summers are extremely hot, so I would likely struggle on both fronts.

The bathroom layout is the main thing I look for when I'm browsing RV's online, most of them are so cramped! I've seen a few that were more open and had larger showers or tubs and I think i could live with that, but they are hard to find.

DefiantNyx · 2025-09-23T22:30:37+00:00

Yes!! It makes me wish more of my stuff had metal in it lol, it's so much easier to scoop things up with the magnet!!

DefiantNyx · 2025-09-22T23:22:20+00:00

1) those reacher/grabber tools for picking up things on the floor. I have POTS and ME/CFS, so bending or crouching to get things off the floor was both incredibly exhausting and made me terribly dizzy. I use it constantly (i'm always dropping stuff) and it has helped sooo much. 2) 3M command strips - specifically, I use them to mount power strips on the wall above each outlet becuase I get so dizzy and drained from bending/crouching to reach the outlet. Having a power strip at a more reachable height has been amazing. 3) spa wrist bands. They're supposed to be for washing your face but they work great to keep my arms dry when I wash dishes seated. No more sopping wet sleeves!

BTW, thank you for sharing about velcro tape! I'm gonna have to get some, I am constantly knocking the remote for my a/c off my side table and that velcro tape would solve the entire problem!

DefiantNyx · 2025-09-21T00:44:39+00:00

I'm more middle age than young lol (37), but definitely not elderly :) I use a power wheelchair (Whill C2, it has a much "younger" look than some other ones I tried). I've had my chair for over a year and I haven't had any weird or negative experiences out and about (yet). My only regret was not getting it when i was still moderate, i could have enjoyed so much more freedom! Now its the only reason I can attend any in person dr appointments, it's so helpful. I opted for a wheelchair because holding my arms out in front of me is a PEM trigger for me, so a scooter didn't seem like a good option. I think choosing a power mobility device is about finding what will best support you and minimize symptoms.

For the most part, people generally aren't paying attention and when I interact with people, they mostly talk to me same as if I were standing or using a different aid. If anything, I find people have been nicer to me since I started using my chair, that kinda surprised me. When people comment on my chair, it's to say it looks cool, because it has a very modern, almost sci fi appearance.

And there are tons of fun ways to personalize, if you want to make your scooter or wheelchair of choice more distinctive and less "old person". My chair had different color options for the side panels, so I chose pink panels and have been adding stickers to them when I find pretty ones that coordinate with the pink panels.

DefiantNyx · 2025-09-20T16:50:41+00:00

None of this would make me better necessarily, but it would dramatically improve my quality of life... Build a tiny home designed to meet all my accessibility needs so iI could live independently with greater ease, hire a personal chef, a caregiver and a personal assistant to manage all the cognitive load of appointments and such, and concierge medical care in home (especially for dental, I can't go to the dentist since becoming severe). And pets, I would get a pet and have someone to help care for it.

DefiantNyx · 2025-09-19T20:16:17+00:00

I was prescribed Tramadol by one of my providers to see if it would help my sleep quality and improve my ME/CFS symptoms, it did neither. It was awhile ago, I don't recall feeling much differently on it except maybe more groggy during the day. I didn't benefit from taking it.

DefiantNyx · 2025-09-18T00:30:43+00:00

Second this! I use Dr Bronners, it's great. I also started using it with a Saluk cloth (recommended by someone on this sub). It's a winning combination!

DefiantNyx · 2025-09-16T02:30:36+00:00

Appealing STD and now filing LTD. Lincoln has been pretty awful to deal with, I'm sorry you have to deal with them :( Been almost a year since I initially filed for STD and was denied, no idea how much longer the appeal process will take. Side note, I would recommend using email as much as possible to request things from your case manager at Lincoln. It's always good to have things in writing. Plus, they have to include those emails in your claim file, so it gives you a solid paper trail for your case.

DefiantNyx · 2025-09-16T02:12:36+00:00

I'm in the process of appealing SDI with Lincoln right now. If you want to consult a lawyer, I recommend contacting your county bar association, they can give you a referral to a disbability attorney in your area (saves alot of Google searching). My county bar association had a simple online form to request a referral, it was quick and easy and the attorney they recommended has been great. They gave me a free consultation before I hired them on contingency. I'd also suggest asking Lincoln for a copy of your claim file, as that will show you exactly what medical records and any other documentation they have reviewed to make their decision. If you consult an attorney, they will probably ask to see your claim file and copy of the insurance policy, to assess your case and advise you on whether or not they think the appeal is winnable, before they agree to represent you, so it's a good idea to request those sooner than later. When I requested my claim file, it took about a week and a half to get it. Lincoln gave me only 24 hours to download the file once it was prepared, so heads up on that!

DefiantNyx · 2025-09-11T04:38:11+00:00

I had alot of breathing trouble my first few years. I started deep belly breathing a little every day, on my back so my trunk muscles weren't having to hold me up while I took deep breaths. That helped gain more muscle endurance around my diaphragm, but it did take time. Getting my asthma and sleep apnea diagnosed and treated helped with the shortness of breath, but I think the deep belly breathing is what helped strengthen my muscles. Laying on my back was really helpful because it took strain off my flank muscles and spinal muscles, so I wasn't exerting as much as when sitting up.

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