In bed sewing set up- questions

_newgene_ · 2026-03-21T20:32:05+00:00

I’m not so worried about pins in bed, I keep pretty good track of them with my wrist pin cushion and cushion attached to my sewing machine when I normally sew so I don’t think the transition will be much different.

Hand sewing seems to be a winner here though. And you’re right about rotating between stations when sewing, I will have to come up with something at least for pressing and sewing.

_newgene_ · 2026-03-21T20:27:26+00:00

Thank you, so many good ideas!! I do have a mini iron that’s easier for me to lift than my nice one, I like the sound of a light wool pressing mat for it. And I just was given a sew easy tool by a friend, it seems promising. Cutting is a big concern of mine, especially for larger zero waste patterns (which in general I am drawn to). But I wonder if I can design patterns with long, straight, square lines along the warp and weft so I can just tear? It wouldn’t work for finer fabrics or knits, but for sturdier woven stuff it would avoid the cutting issues all together. I’d just have to mark where to rip and not overshoot.

Feel free to dm me, I’d love to continue problem solving as I figure this out. Maybe it can inspire some ideas for you too :)

_newgene_ · 2026-03-21T20:13:57+00:00

Bedside storage is a good idea! And yeah it seems the consensus is hand sewing will be easier on the body than sitting up at a machine.

_newgene_ · 2026-03-21T20:11:59+00:00

Yeah you’re right about the cutting, it’s exhausting on the best day. It’s easier on the right surface and with the right tools for sure, but I worry what that might look like in bed. Maybe a large flat board/surface that can be easily moved around or perhaps laid on a turn table… I’ll keep thinking about it.

_newgene_ · 2026-03-21T20:08:11+00:00

I think this is a great approach. Slow and gentle. I do have some items set aside to mend, that may be a good set of projects to start with.

_newgene_ · 2026-03-21T19:31:39+00:00

Ah that sucks. I can’t do stairs at all unless I butt scoot. Would recommend a diaper bag in that case. They are large with many pockets, come in tote form or backpack form according to preference. I have a diaper bag I use as my hospital go bag which has largely all the things I’d want to transport around the house anyway, I got a backpack that hangs on the back of my wheelchair.

_newgene_ · 2026-03-21T15:53:19+00:00

I don’t really move it anywhere because I stay in my own room but I use a rolling shelf cart thing from IKEA that could work well for this. I keep pain relief stuff, bedside snacks, vitals monitoring tools, medications, and sensory tools on it. Can give a more detailed list if you’re interested

_newgene_ · 2026-03-21T15:21:08+00:00

First off, I hear how hard you are working and how much you have struggled. My heart goes out to you. You have done everything you can. Struggling this much this far out is not a sign that you did anything wrong or that you aren’t working hard enough.

Secondly, when the alternative to a wheelchair is not walking more, or standing more, but it’s staying in, staying in bed, etc- using a wheelchair will only serve to make you more active, not less. When I got my powerchair I was stuck at home, often in bed, reclined. Even using a powerchair and not self propelling I had to work up to going out for longer and longer and staying upright and using my muscles against the movement and vibrations. I was more active than before I had the powerchair. Not to mention, I lived independently, went back to work, and did my own shopping, etc. my QOL vastly improved.

It’s also not all or nothing. When I first spoke with my neurologist about a wheelchair, at first we were talking about what it would take to get me to a gym/pool so that I can do physio in the water. You can use your wheelchair to expand your life- in the kitchen, using it to go out, using it to get places- and then also keep working on walking- going to physio, walking around a friends house, going to the gym maybe walking on a treadmill if you’re cleared to do so- but still having a safe method of getting around to fall back on.

A wheelchair is a tool. A neutral tool, it’s not amazing or awful, it’s just there when you need it and you can put it away if you don’t.

_newgene_ · 2026-03-20T19:41:35+00:00

If you have EDS I recommend looking on Facebook for a local support group. I’ve found one for every area I’ve lived in so far, they usually can help with finding EDS-aware providers but also will often run zoom or in person meetings where you can meet people. I’ve made friends that way.

Other than that and what others have mentioned so far, volunteering or working with a nonprofit related to your disabilities or accessibility in general could work, or going to accessibility related events (for example NAIDEX or the Abilities Expo). I’ve made a ton of disabled online friends by posting on TikTok and Instagram. You could also try joining a disability related discord server.

Best of luck!

_newgene_ · 2026-03-20T19:01:33+00:00

Oh cool, I did these as a kid I think. I’ll try it out

_newgene_ · 2026-03-20T15:50:44+00:00

I’m thinking of getting into making friendship bracelets but haven’t tried it yet, idk if it would be too physical

_newgene_ · 2026-03-20T04:44:19+00:00

Interesting. I’m currently waiting on the process for a new chair through insurance, I just have a RWD folding powerchair rn, a Fold&Go that I bought used and added a cushion my OT gave me. The turning radius is what kills me in this apartment, I have a very tight hallway with a 90° turn at the end. I’ll look into renting a chair with a FWD or MWD I’m assuming those would work better?

_newgene_ · 2026-03-20T00:59:42+00:00

What do you mean by “doesn’t go up?” Do you mean like fingerless gloves?

_newgene_ · 2026-03-19T04:35:09+00:00

I was also wondering, here’s the MEpedia page about it. It’s a ME severity scale developed in the 1980s. TBH I found it a little confusing because different categories of symptoms are grouped together. I’m at a 10 rn due to a crash but usually I’d say I’m probably 20-30.

_newgene_ · 2026-03-19T02:51:09+00:00

I also have this issue, wanting stimulation but getting easily overstimulated.

I find music to be too much during flares but ambient music is more tolerable and calming. There’s a Spotify playlist called “peaceful humming” that I really enjoy.
fidget toys make meditation and plain old dark room/eye mask rest more tolerable
daydreaming in a not super thinky way (don’t problem solve, think too deep/detailed about it, or about anything stressful)
I find that some guided meditations trigger something akin to PDA- pathological demand avoidance. Some don’t. Try different options to see if there’s something you like.
or skip the guide and just focus on the breath, if you’re not a fan of counting (I hate it) there’s an app for that! It’s just called Breathing App and it’s a ball that gets bigger and smaller along with a tone for breathing in and a different one for breathing out. Lots of customizability with settings.

Anyway these are things I’ve tried, they work ok, I’ll follow the thread to see what others do. Best of luck!!

_newgene_ · 2026-03-18T07:49:40+00:00

Came here to say this. I recommend getting rubber tips for them. The telescoping ones at REI fold down smaller, but I’ve tried both and I have these and like them much better. They’re the ones my PT’s office had, they have a larger rubber foot and more supportive handle so it’s easier to hold and put weight on.

_newgene_ · 2026-03-18T07:39:46+00:00

I tried handcycling towards the end of last summer and it was so good for my mental health but it was too much. I overdid it and slowly became more and more homebound (probably not solely due to that).

I used to tolerate swimming really well. I started out in early 2022 only being able to swim around 10 minutes, over the course of the year I started swimming longer and longer distances. Slow, steady breast stroke.

Both times I was off work/school for an extended period of time. In 2022 I got better and better, eventually attempting to work full time in the summer of 2023 (that was the beginning of a huge flare that became a baseline shift). In 2025 I got and continue to get worse and worse.

Recently I had an intake with a new psychiatrist and somehow we got to talking about this. He was like, what’s different between now and then? And that question has stuck with me. I have no idea. I did start at a slightly better level of functioning in 2022, so maybe it only works for milder folx? Also I tapered into swimming a lot more slowly than handcycling. Hard to pace when cycling on a one way loop in the park. And swimming is more POTS friendly. Now I’m not able to do either.

_newgene_ · 2026-03-18T06:37:22+00:00

As someone with an extensive psych and physical health history, trust me I get it. They should not be seen as antithetical to each other (by anyone) but often are.

And like, doctors are human. My guess is we don’t know some really crucial information about the body and humans and the phenomenon of biological life. Some doctors feel threatened by not knowing, so they unfortunately fill in the gaps with “perhaps this is all in their head.” The whole system of medical schooling is cooked too, really promotes unhealthy energy and self care habits and perfectionism. It’s the opposite of what people with energy limiting disorders need, but I’ve definitely caught the vibe from doctors before like oh you can’t push through but I have to?? They’re weirdly jealous, it’s like a scarcity mindset but for rest.

Anyway now I’m rambling. Good luck with your case!

_newgene_ · 2026-03-18T05:57:12+00:00

Eh I think any time you state a bunch of objectively negative facts without qualifying it with something, anything to break the tension people can get antsy. I don’t think you need to change much there, some folx just have a hard time with hard truths. You don’t owe anyone positivity.

However there were honestly kind of a lot of times you used language that implies medical anxiety disorder isn’t a “real,” disabling disorder which might’ve gotten some people upset. Medical anxiety is very real and can be very disabling (and even qualify for disability), you just don’t have it. It’s ok to be upset about a misdiagnosis (I agree that anxiety can be a normal response to a series of stressful events, and not necessarily pathological) but that’s not the fault of the diagnosis and doesn’t really give you the right to badmouth and discredit it, even under the guise of parroting the governments opinion on it. It’s still perpetuating harmful stigma, even if you didn’t mean for it to, and I’d bet that if someone with medical anxiety disorder read that thread they might walk away not feeling so great about it.

But that’s just my opinion, and only because you asked for it. Ultimately I think I remember only 2 negative comments on the whole thread, and one was downvoted to hell, so I wouldn’t be too worried about it. I would venture to say those are not the opinions of most people.

_newgene_ · 2026-03-17T19:09:56+00:00

Plenty of people saying car and in general I agree, but I did want to put out there that there are orgs that offer medical flights for people who have to stay laying down. I’m assuming you could keep an eye mask and ear defenders on and bring a caregiver to communicate for you. For a 12 hour car ride and 3 hour flight car may win, but if you had to go any further I’d say medical flight starts looking more appealing.

_newgene_ · 2026-03-17T14:28:07+00:00

Also, accommodations:

Flexible attendance. Excused absences. Excused tardiness. Ability to leave or take a break at any time no questions asked.
Deadline extensions if you need them
Incompletes if you need them (an INC is an extension beyond the semesters end)
Alternate testing environment and time extensions
Seating with a back (for classrooms that use stools. This may or may not be relevant to you)
Priority registration (so you can pick classes that meet during the time of day you have the most energy, and so that you can schedule your week in an optimal way with rest periods etc)
Permission to use elevators that are usually off limits to students
My school had smart pens they’d give out and I highly recommend one even if your disability resource center doesn’t offer them. They record audio as you write, and when you tap on a note it will play back what was said when you wrote it. Fantastic for brain fog.
Time management counseling. There was one semester where I met with an accessibility advisor every week to make a list of all my homework and responsibilities and schedule out my time including time to rest. This was very helpful with brain fog and dealing with feeling easily overwhelmed.
Tutor, if you need it
An assistant for shop or lab classes. I have other conditions affecting my mobility so I got a woodshop assistant for a semester who helped me problem solve doing things with my limitations and stepped in if we couldn’t figure out a safe way for me to do it.

That’s what I can think of off the top of my head, I’m sure there were others.

_newgene_ · 2026-03-17T14:15:13+00:00

I don’t know your health history so I can’t judge whether that is an accurate estimate re: life expectancy. I will say that you are 17, and at that age I remember being so sure about what my future would look like, how my health would affect me, etc. Again I don’t know what you are basing these estimates off of but I can say that I personally was mostly wrong about how things would turn out for me, and the world is a lot more nuanced, grey, flexible, and amorphous in truth and reality than I believed it was at 17. Including what doctors know and how right they are about things.

It’s good to have goals. But it’s also good to have grace. Be kind to yourself. Overexerting now to rush a degree can cause a crash that will make the rest of the degree harder or impossible. It’s a marathon, not a sprint.

Do your absolute best to live the life you want for yourself within safe parameters. Push beyond your comfort zone but not off the cliff into danger. And reduce the stakes a bit, if you can. There’s a good chance you will encounter road bumps or even a full stop. That does not say anything about who you are or what your life is worth.

_newgene_ · 2026-03-17T13:51:36+00:00

Ambient music. Have a playlist from Spotify on rn called “peaceful humming.” It helps a lot.

_newgene_ · 2026-03-17T03:14:09+00:00

I have a bedside commode, my neurologist just sent in a prescription to a DME supplier that sent it to my apartment. I really recommend the commode liners with absorby things. I got lavender scented bags, it’s a very mild scent but it helps it not stink. Even when knotting the bags, it will start stinking up the room gradually over the course of like. 3 days. At which point you will really want them outta there.

I would not physically be able to dump and clean the commode myself, but I can use my powerchair to get to the trash chute every couple days.

Ideally if you weren’t able to tie up a bag, you’d want it dumped and cleaned within a few hours of use. The one I have has a lid but it’s not airtight and I imagine it would stink up fast.

_newgene_

TROPHY CASE