I have ME/CFS and am stuck in bed the majority of the day, every day. On average probably about 22/24 a day. As such it has been huge for me to have two beds, one "sleeping bed" and one "resting bed." This has been a major privilege and is soooo helpful in getting better sleep and allowing a mental separation that makes me feel a little more like a normal person "getting out of bed" in the morning. :)
Heating pads and ice packs are great! Also maybe some wet wipes or makeup wipes or some sort of face mist (I like rosewater) Just because sometimes it feels nice when your face is hydrated. Also lotion or lip balm.
i know this videos old and its weird to comment on now, but I used to have a projector that would project onto the ceiling i miss it sooooo much it was the best thing ever!
I know this video is old...but i just discovered it. Some great ideas here. I would add that I have a power/lift chair which reclines from flat to tilted way up so it can get me to my feet making it much easier for me to get up and down. I also have a hospital bed that is motorized and I put a wonderful 6" topper on top of it which makes it super cozy....until you get that lovely Me-shaped-divot from always laying in the same spot.
Depending on someones ability to use their hands/ see fine detail, these can be good options: making jewelry, playing with non-oily/ non-messy clay, playing Sudoku, doing crosswords, writing poetry, writing a book, texting, playing handheld games/gameboy, or painting your nails. If someone has a vision impairment they might consider knitting/ crocheting, listening to CDs on learning a foreign language, or learning to play a lap harp- my grandmother, who was legally blind, did all three of these on occasion.
I love that you mentioned the vision impairment, poetry and book writing don't require detailed vision, or any vision at all, anymore either(god bless accessibility apps), I can't say I have become quite bored enough to acquire a lap harp, but it has been a close thing lol. I have vision, the more I use it, and the more light I am expose to, the more it hurts like hell and goes all patchy. So yeah. I like that you mentioned the options that don't require it
When I was recovering from my hysterectomy and had to spend a ton of time laying on my back, I got frustrated because I couldn't do the making stuff that I would usually do (making stuff gives me life), but someone suggested a simple crochet project. It has been about seven months since then and I'm just now getting to the completion of the afghan I started. I think crochet is better than knitting for bed rest because if you fall asleep and it falls off the hook, or if you have to take a rest and put it down suddenly, when you pick it back up there is very minimal work (if any) to be done to get it back to where you were. With knitting you will have a big problem if it falls off the needles, and it's a little easier to get frustrated. So I highly recommend getting some cheap acrylic yarn (caron one pound yarn is good and soft and a satisfying weight) and make yourself a blanket or a pilowcase or a plushie or something. It can also be a way to connect with the outside world because you can make small gifts for people.
One of those tiny refrigerators near the bed would be great! Also if it's not too exhausting, colouring, journaling, scrap booking or knitting can be fun. Online gaming too if you're up to it!
I have an electrically adjustable bed. That has been a huge help for me. I also have one of those rollable tables which you roll over your bed. That has helped a lot too since i am currently on complete bedrest for a long time so i eat and everything in bed.
I have a 12foot "u" pillow designed for pregnant people. It really helps with positioning, I can wrap it round me to help me sit, tuck it between my knees to stop my hips straining or under my knees to help my back, because it's so long it can do a bunch of these at once. My profiling bed is great for positioning too (a major outlay but has been worth it for better sleep and less pain), I can fiddle with it until I find a position that is just right. It means I don't have the issue where you have hundreds of pillows and you have to keep readjusting every 5 minutes because one shifted position slightly. Nice soft & pretty bed linen is a must (I'd rather have new sheets than a new outfit). And some nice snuggly, preferably heavy, blankets. As for things to do I'm crocheting a lot at the moment which is great. If you do a piece big enough it will keep you warm as well as keep you occupied!
I've really been looking into the pregnancy pillows recently. Regardless of my disabilities & how I want to fall asleep (& hope I wake in the same position), I still wake up on my side (slightly turned on my tummy, completely on my hip - my back slightly turned, not great with my EDS & Fibro, pain is excruciating). I just can't position my pillows correctly enough to get into that position. I can't have feather pillows due to allergies, so my pillows can become flat, but the thought of having the V/U shaped pregnancy pillow to wrap myself around may help my hips stay in place & align my back! Thank you so much for the review, I have been wondering about this for some time x
coloring supplies, word search/puzzle/sudoku books, worry stone, eye drops, chapstick, lotion, stretching band, etc etc etc are all nice things to have bedside!
Bed rest is crucial for me at this point, but it's hard to get that, as I'm literally living in my parents' basement having to hear the constant drama...now that stuff is opening back up, and I can start looking for a new spot again; I'll keep these things in mind for then.
I have H-EDS and was having a lot of problems with My finger and hand mobility. My Occupational Therapist suggested crocheting and/or knitting so that I could gane back a little bit of My mobility and control back. She sat down with me for an hour and we figured out what would be the best for me to hold the needles and the tension of the yarn. Now I usually crochet when I am on bed rest or even just watching a movie. I also really like the adult coloring books.
I got a projector for my bedroom. I have to lay in bed with my head facing the ceiling often- so I set my projector up so it projects onto the ceiling!
Loved this video. I spend about half my time on bed rest, and it turns out our lists are pretty much the same. I do a lot of puzzle books also though. I tend to buy both children and adult books, since I never know how well my brain will be working that day. I wish I could still do craft projects, but the pain in hands doesn't allow for it anymore =(
A laptop or something you can use for streaming services for watching TV and movies (like Netflix). Netflix or similar streaming service. UA-cam for entertainment, education, tutorials etc. I see an amazing amount of ASL videos and documentaries on UA-cam, actually. Writing tools of any kind. Anything small and crafty that you can do in bed, smartly organized to be easy to move around and use: knitting, crocheting, loom knitting, small patchwork/quilting projects that you can do by hand, folding paper figures, making paper baskets from newspapers, mending stuff... Most of this can be placed on trays and small tables on wheels, and in baskets, to make them easy to move as needed. I have a bunch of cloth bags with one project in each bag, hanging on my bed post. Music apps for streaming music and discover new music. Hearing aids to hear the music (better). Put them within easy reach. Headphones to not disturb people unnecessarily. Video phone, so you can make any calls you need and like to make. Mobile phone for texting and everything else you can do with it. A good mattress/a good bed is way important. Heavy duvet with chains in it might work for some, because it feels like a big full-body hug. Help with insomnia and anxiety, for example. Something to fiddle with. Can be a shoe string or just about anything. Works for when you are restless but can't focus on making anything. Nutritional drinks. Will keep you alive and can be stored in room temperature for ages. Fruit in a bowl or box. A waste basket within dropping range. Ok, I'm out of ideas now.
Honestly the only thing that got me through bed rest was audiobooks. My faaavorite thing though is when people say audiobooks are "cheating" even if I wasn't able to physically read a book lol.
Hehe, yeah, I can't read print books either, and audiobooks are a lifesaver. I haven't had the 'cheating' one, but I have had people get all confused and paranoid when I say that I am 'reading' a book. And they think it's a miracle, and it's like, no, I meant reading with my ears, but 'I am listening a book' sounds silly.
Rebelwheels NYC I miss music so much. I use to listen to music All. The. Time. I've had chronic headaches (& now, migraines) that got to the point that I couldn't listen w/o making the pain worse. As I get more control over my fibro, hope that as I get better, I'll be able to listen to music more.
My cats nap with me when I'm stuck in bed and I've recently started putting on bird videos for them. It's fun to watch them play, and it's nice to see some nature, too :)
If you really want to feel like you're being hugged by your bed and blankets, definitely get a weighted blanket. I sleep SOOO much better now and am so much more comfortable in bed. Another thing that helps me out a lot is my TENS unit for helping to keep my pain somewhat in control.
I have AS and RA and spend tons of time in bed, so I get it! I like to keep my heating pad, a back scratcher (med side effects make me itchy), lotions, and I have my lights and fan on a remote control so I don't have to get up. It's a huge help!
I like fiddle toys and stim toys, I am Autistic, so for me they are a must have wherever I am, but particularly when I am stuck in bed, particularly if I have a full-blown migraine and can't use my eyes, and sometimes my ears, without extreme pain.
omg yes bed desk. I do have a drafting table but when i dont have the energy i like to sit hunched over and sketch, which my neck and back hate. I'm not on bed rest but with my hypersomnia/delayed sleep phase syndrome i tend to spend a lot of time in bed/napping on days i dont take my stimulants.
Finding out that a local NPR station comes in on my radio has been great. I get to learn about all kinds of things, stay up to date on current events, hear stories from people all over the world... It's nice. I keep craft projects nearby. If I can craft I feel productive and it keeps some of the bed rest depression at bay. Different lighting options are nice. Having your bed below a window so you can get fresh air at any time is also nice.
I would include a pen and paper. If I can't move around, that doesn't mean that my mind stops. I often need to write down ideas and 'To-Do" lists that I think of while relaxing. I also have a free Solitaire card game and such downloaded on my computer to do to relax me. Also you can do searches for 'Full Length Free Movies', and enjoy. You will be surprised at how many movies, TV series and lectures are available on line. You can even find videos and movies from other countries, too. The University lectures have so many topics to choose from. There is bound to be something to interest you. I also sometimes use this time to get my sewing/mending done.
My hands use to be so tinkery... love drawing, painting, writing, playing a guitar..making crafts.. but its so wierd that i don’t wanna do any of these to keep myself busy now that im having a bedrest.. all I have is my phone.. and still so sick looking at it. Gotta avoid fb.. some posts r really sickening..and sometimes i feel so ridiculous.. i feel depressed, worried, so helpless... so incapable.. worthless.. aaaaah! And when i snap out of my lowly moments, i Would talk to my baby.. say sorry and ask him to hold on.. pray for him.. for us.. then here comes my husband iv been waiting the whole time .. then he would do all his responsibilities for me.. but in my mind, i really feel sick of his presence-like a wanna vomit..and i dont even want him to kiss me or touch my tummy or caress me , i dont want him to touch me in any way..But i miss him when hes not around.... Really wierd and funny me.. hope this will end soon.. its my 3rd month of pregnancy..
I love hugging my pillow pet in bed, especially when I have cramps! Can you please do a video on what to do about family who don't understand your disabilities, even when you've explained it to me a million times? My dad just doesn't get it, he thinks I'm fat and lazy. And when I've talked about getting a wheelchair he said it's a horrible idea and will make me die young :( any tips? xxx
Blithe Dream You have my sympathy for non-sympathetic family. They can't understand since they haven't been in your situation. Yes, it's hard to keep your weight down when you don't use that much calories, but then again - a wheelchair can enable you to do stuff and get out of the house (as opposed to sitting and lying at home only). I use always have my wheels with me. Sometimes I walk using the wheelchair for support and sometimes I drive it, depending on how I feel at the moment. Wheels are freedom and independence! People don't see that. They resent the wheelchair because it makes your difference and disability tangible, visible and they don't want to acknowledge it. They don't know how to handle it. They feel that it's better if you don't "flaunt" your needs for accommodations. Then they don't have to change anything. They would rather have you more disabled and dependent than visible as a person with disabilities roaming around free and somewhat more able. Or they pity you for exactly what makes your life work better for you, because now they can see that there's "something wrong" with you. Long rant about my experience and perception of this. Anyway: tell them that you want to be able to do stuff and make your life work better. That whatever you need to make that happen is a freedom and a bid for more independence. Tell them it's not a death sentence. And if they can't wrap their heads around what your disability, your body and your life is like, that's their problem. They don't have to say anything unless they have something supportive to say.
I know it's been quite a long time since you posted this comment, but I just wanted to give you support and solidarity. I hope your dad and non-supportive family have either come around by now and realize that there *are,* in fact, ambulatory wheelchair users out there or you've found the strength to cut them out of your life. I've been (and am) where you are. Remember, no matter what your family says, you don't need their negativity, you're not lazy; you're disabled (or whatever term you ID with), and yeah, maybe you're fat or maybe you're not, but there's nothing wrong with either one. Rock your life, hun! Take care of yourself and I hope you're having a great day!
When I'm resting in bed I do all the same as you but I have a few other things I do depending on how bad I am and if certain parts of my body hurt or not so if my fingers aren't hurting I crochet, knit, color, crosswords or other puzzle books, or any kind of arts and crafts. Again that depends on if I can sit up or prop myself up. If not it's the usual. Listening to stuff, watching movies or you tube.
A good thing to have for bedding is a lambs wool rug/underlay. If you're there a long time they help to prevent ulcers and bedsores. I am also lucky enough to have an electric bed (my dads friend gave it to me secondhand). It is honestly the best. thing. ever. So comfortable. As for entertainment, I have an app called DroidTV on my (android) tablet to download shows to binge on. I have a tablet 'arm' too that clips onto my shelf above my bed and holds my tablet at eye level (from eBay). I also recently got a Chrome Cast to play whatever I want on my TV. And for my TV I have a cable plugged into the audio part that runs to beside my bed where I plug in my headphones. I do this for my 3am Gilmore Girls viewing and not wanting to wake everyone else up. Also good if you have impaired hearing. Oh and I have a box beside my bed full of earplugs for a better nights sleep :)
Thank you for this lovely informative comment. I haven't quite come to terms with my diagnoses yet (diagnosed with EDS & Fibromyalgia in Nov 2014 but had symptoms 2yrs up to that time, they drastically deteriorated from that winter onwards). I'm currently bed bound, & will soon be purchasing a new bed (although sadly budget won't go as far as to one like yours - I can dream though!) I am looking into a mattress topper as my swollen facet joints & subluxing / dislocating joints are becoming excruciatingly painful, & I wondered if to get a medium/firm (not firm - too hard) mattress with a mattress topper. I am allergic to feathers, but pretty sure I'm fine with wool, & I'll have a sheet on top of that. Are they pricey? I am in the UK. My only other wish is that I could get hold of one of those plastic bottles Annie mentioned in this video, the ones here are tiny & I drink 4+ 1.5litre bottles a day, I drink from pint glasses but I'm accident prone & they're heavy! Love your set up x
Microwave heat pads, tens unit, tons of blankies, salt lamp, ear buds, nook, phone, tv remotes, books, pillows, tablet/phone/book rest(peeramid)..., this are my must haves.
I love audiobooks. They're great for when brain fog gets bad or you just can't sit up enough to look at a screen and your eyes don't want to work enough to read (usually brain fog related)
this is _super_ late, but dental hygiene is huge. i find that non-water disposable toothbrushes that i keep on my desk or bookshelf (which are right next to my bd and basically my nightstands) are super helpful. dental issues absolutely will frick you up in the future, and if you only have the spooons to do one thing, it should definitely be brushing your teeth. also, a trash can/trash bag next to your bed can be super helpful to deal with all the pesky wrappers. i saw someone on tiktok with special trash bags that they found on amazon that you can stick to surfaces and that look super easy to manage, and i highkey want em (i'm rarely bedridden for more than a couple of hours, maybe a day, at most so i don't have a ton of experience with this btw)
I am needing to be off my ankle while waiting for my third ankle surgery since the original surgery on my right ankle failed. My mom got my a DVD player and Roku. I got a hospital rolling table to do my work for my day program for adults with Autism. I got more books to read. I have games on my iPad and phone that keeps me busy.
I like giant Lego bricks for stacking things beside the bed and making sure to make an effort on my appearance most days to remain sane. Then every once in a while I just look like a monster ate me then puked me out and of course that's when I get visitors. lol.
If u have a library card, & your library participates in these program, check out the Libby app (new version of an e-checkout of e-books like overdrive) & the Hoopla app ( an app that allows a certain # of checkouts for e-comics, audiobooks, music, & movies). Both if these apps are free to get & to use. I love borrowing comics.
I play a lot of Visual Novel games because most of them are a sort of pick your own adventure type stories that don't take a mouse and so I can play on my laptop and they are really interesting. They also have a good number of free ones on Steam so that makes it even easier. Do you have any recommendations to make a bad quality mattress comfier though? My bed is just the basic dorm room beds at the moment and they hurt a lot.
I don't know if it can help you, because it's weird and kind of dumb, but as my mattress is really old, I have two extra duvet type things underneath me, like one is under the sheet, one on top of it, and then the normal one that sits on top of me. You might only need one instead if two, depends how bad your mattress is. I also have lots of blankets and pillows, so changing my bedding/doing laundry is exhausting.
Way late to the party, hopefully you are out of that situation now, but what I do at dad's is I have a thick foam squab mattress from a camp-stretcher on top of the regular mattress, it works quite well, the underneath mattress provides support, and the on top one means it doesn't hurt if you are lying in it for hours. When I am stuck in bed the pain is in my head and stomach though, not joints and muscles, so I can't guarantee its effectiveness for that.
A laptop or something you can use for streaming services for watching TV and movies (like Netflix). Netflix or similar streaming service. UA-cam for entertainment, education, tutorials etc. I see an amazing amount of ASL videos and documentaries on UA-cam, actually. Writing tools of any kind. Anything small and crafty that you can do in bed, smartly organized to be easy to move around and use: knitting, crocheting, loom knitting, small patchwork/quilting projects that you can do by hand, folding paper figures, making paper baskets from newspapers, mending stuff... Most of this can be placed on trays and small tables on wheels, and in baskets, to make them easy to move as needed. I have a bunch of cloth bags with one project in each bag, hanging on my bed post. Music apps for streaming music and discover new music. Hearing aids to hear the music (better). Put them within easy reach. Headphones to not disturb people unnecessarily. Video phone, so you can make any calls you need and like to make. Mobile phone for texting and everything else you can do with it. A good mattress/a good bed is way important. Heavy duvet with chains in it might work for some, because it feels like a big full-body hug. Help with insomnia and anxiety, for example. Something to fiddle with. Can be a shoe string or just about anything. Works for when you are restless but can't focus on making anything. Nutritional drinks. Will keep you alive and can be stored in room temperature for ages. Fruit in a bowl or box. A waste basket within dropping range. Ok,I'm out of ideas now.
![What is Accessibility? [CC]](http://i.ytimg.com/vi/zsMo7SOuB1c/mqdefault.jpg)
![What is Accessibility? [CC]](/img/tr.png)
I have ME/CFS and am stuck in bed the majority of the day, every day. On average probably about 22/24 a day. As such it has been huge for me to have two beds, one "sleeping bed" and one "resting bed." This has been a major privilege and is soooo helpful in getting better sleep and allowing a mental separation that makes me feel a little more like a normal person "getting out of bed" in the morning. :)
cartograp nice! I try to do that sometimes with the couch, lay there for the day and then come back to bed :)
I love the 2 beds idea! Genius. Thanks!
cartograp such a great idea.
cartograp I make my bed into a “couch” during the day or migrate to the couch. Like you said, gives you that mental separation. :)
Heating pads and ice packs are great! Also maybe some wet wipes or makeup wipes or some sort of face mist (I like rosewater) Just because sometimes it feels nice when your face is hydrated. Also lotion or lip balm.
i know this videos old and its weird to comment on now, but I used to have a projector that would project onto the ceiling i miss it sooooo much it was the best thing ever!
I know this video is old...but i just discovered it. Some great ideas here. I would add that I have a power/lift chair which reclines from flat to tilted way up so it can get me to my feet making it much easier for me to get up and down. I also have a hospital bed that is motorized and I put a wonderful 6" topper on top of it which makes it super cozy....until you get that lovely Me-shaped-divot from always laying in the same spot.
Depending on someones ability to use their hands/ see fine detail, these can be good options: making jewelry, playing with non-oily/ non-messy clay, playing Sudoku, doing crosswords, writing poetry, writing a book, texting, playing handheld games/gameboy, or painting your nails. If someone has a vision impairment they might consider knitting/ crocheting, listening to CDs on learning a foreign language, or learning to play a lap harp- my grandmother, who was legally blind, did all three of these on occasion.
I love that you mentioned the vision impairment, poetry and book writing don't require detailed vision, or any vision at all, anymore either(god bless accessibility apps), I can't say I have become quite bored enough to acquire a lap harp, but it has been a close thing lol.
I have vision, the more I use it, and the more light I am expose to, the more it hurts like hell and goes all patchy. So yeah. I like that you mentioned the options that don't require it
My must haves in bed:
1. A good mattress
2. Music for meditation
3. Beddesk
4. Laptop
5. Sleeping mask
When I was recovering from my hysterectomy and had to spend a ton of time laying on my back, I got frustrated because I couldn't do the making stuff that I would usually do (making stuff gives me life), but someone suggested a simple crochet project. It has been about seven months since then and I'm just now getting to the completion of the afghan I started. I think crochet is better than knitting for bed rest because if you fall asleep and it falls off the hook, or if you have to take a rest and put it down suddenly, when you pick it back up there is very minimal work (if any) to be done to get it back to where you were. With knitting you will have a big problem if it falls off the needles, and it's a little easier to get frustrated. So I highly recommend getting some cheap acrylic yarn (caron one pound yarn is good and soft and a satisfying weight) and make yourself a blanket or a pilowcase or a plushie or something. It can also be a way to connect with the outside world because you can make small gifts for people.
One of those tiny refrigerators near the bed would be great! Also if it's not too exhausting, colouring, journaling, scrap booking or knitting can be fun. Online gaming too if you're up to it!
I have an electrically adjustable bed. That has been a huge help for me. I also have one of those rollable tables which you roll over your bed. That has helped a lot too since i am currently on complete bedrest for a long time so i eat and everything in bed.
I have a 12foot "u" pillow designed for pregnant people. It really helps with positioning, I can wrap it round me to help me sit, tuck it between my knees to stop my hips straining or under my knees to help my back, because it's so long it can do a bunch of these at once.
My profiling bed is great for positioning too (a major outlay but has been worth it for better sleep and less pain), I can fiddle with it until I find a position that is just right. It means I don't have the issue where you have hundreds of pillows and you have to keep readjusting every 5 minutes because one shifted position slightly.
Nice soft & pretty bed linen is a must (I'd rather have new sheets than a new outfit). And some nice snuggly, preferably heavy, blankets.
As for things to do I'm crocheting a lot at the moment which is great. If you do a piece big enough it will keep you warm as well as keep you occupied!
I've really been looking into the pregnancy pillows recently. Regardless of my disabilities & how I want to fall asleep (& hope I wake in the same position), I still wake up on my side (slightly turned on my tummy, completely on my hip - my back slightly turned, not great with my EDS & Fibro, pain is excruciating). I just can't position my pillows correctly enough to get into that position. I can't have feather pillows due to allergies, so my pillows can become flat, but the thought of having the V/U shaped pregnancy pillow to wrap myself around may help my hips stay in place & align my back! Thank you so much for the review, I have been wondering about this for some time x
coloring supplies, word search/puzzle/sudoku books, worry stone, eye drops, chapstick, lotion, stretching band, etc etc etc are all nice things to have bedside!
Bed rest is crucial for me at this point, but it's hard to get that, as I'm literally living in my parents' basement having to hear the constant drama...now that stuff is opening back up, and I can start looking for a new spot again; I'll keep these things in mind for then.
I have H-EDS and was having a lot of problems with My finger and hand mobility. My Occupational Therapist suggested crocheting and/or knitting so that I could gane back a little bit of My mobility and control back. She sat down with me for an hour and we figured out what would be the best for me to hold the needles and the tension of the yarn. Now I usually crochet when I am on bed rest or even just watching a movie.
I also really like the adult coloring books.
I got a projector for my bedroom. I have to lay in bed with my head facing the ceiling often- so I set my projector up so it projects onto the ceiling!
Loved this video. I spend about half my time on bed rest, and it turns out our lists are pretty much the same. I do a lot of puzzle books also though. I tend to buy both children and adult books, since I never know how well my brain will be working that day. I wish I could still do craft projects, but the pain in hands doesn't allow for it anymore =(
I could have actually used one these last few days. Thanks for sharing :)
A laptop or something you can use for streaming services for watching TV and movies (like Netflix).
Netflix or similar streaming service.
UA-cam for entertainment, education, tutorials etc. I see an amazing amount of ASL videos and documentaries on UA-cam, actually.
Writing tools of any kind.
Anything small and crafty that you can do in bed, smartly organized to be easy to move around and use: knitting, crocheting, loom knitting, small patchwork/quilting projects that you can do by hand, folding paper figures, making paper baskets from newspapers, mending stuff... Most of this can be placed on trays and small tables on wheels, and in baskets, to make them easy to move as needed. I have a bunch of cloth bags with one project in each bag, hanging on my bed post.
Music apps for streaming music and discover new music.
Hearing aids to hear the music (better). Put them within easy reach.
Headphones to not disturb people unnecessarily.
Video phone, so you can make any calls you need and like to make.
Mobile phone for texting and everything else you can do with it.
A good mattress/a good bed is way important.
Heavy duvet with chains in it might work for some, because it feels like a big full-body hug. Help with insomnia and anxiety, for example.
Something to fiddle with. Can be a shoe string or just about anything. Works for when you are restless but can't focus on making anything.
Nutritional drinks. Will keep you alive and can be stored in room temperature for ages.
Fruit in a bowl or box.
A waste basket within dropping range.
Ok, I'm out of ideas now.
Honestly the only thing that got me through bed rest was audiobooks. My faaavorite thing though is when people say audiobooks are "cheating" even if I wasn't able to physically read a book lol.
Hehe, yeah, I can't read print books either, and audiobooks are a lifesaver. I haven't had the 'cheating' one, but I have had people get all confused and paranoid when I say that I am 'reading' a book. And they think it's a miracle, and it's like, no, I meant reading with my ears, but 'I am listening a book' sounds silly.
what helped me was word games books and keeping a diary. lots of music too. and had friends over sometimes helped
Rebelwheels NYC I miss music so much. I use to listen to music All. The. Time. I've had chronic headaches (& now, migraines) that got to the point that I couldn't listen w/o making the pain worse. As I get more control over my fibro, hope that as I get better, I'll be able to listen to music more.
My cats nap with me when I'm stuck in bed and I've recently started putting on bird videos for them. It's fun to watch them play, and it's nice to see some nature, too :)
If you really want to feel like you're being hugged by your bed and blankets, definitely get a weighted blanket. I sleep SOOO much better now and am so much more comfortable in bed. Another thing that helps me out a lot is my TENS unit for helping to keep my pain somewhat in control.
OMG I laughed out loud when the blankets gave you a hug and then you forgot what number you were on!!!!!
so sad, yet so true... (I'm also frequently in bed due to pain, though mine isn''t EDS)
I have AS and RA and spend tons of time in bed, so I get it! I like to keep my heating pad, a back scratcher (med side effects make me itchy), lotions, and I have my lights and fan on a remote control so I don't have to get up. It's a huge help!
I like fiddle toys and stim toys, I am Autistic, so for me they are a must have wherever I am, but particularly when I am stuck in bed, particularly if I have a full-blown migraine and can't use my eyes, and sometimes my ears, without extreme pain.
omg yes bed desk. I do have a drafting table but when i dont have the energy i like to sit hunched over and sketch, which my neck and back hate. I'm not on bed rest but with my hypersomnia/delayed sleep phase syndrome i tend to spend a lot of time in bed/napping on days i dont take my stimulants.
Finding out that a local NPR station comes in on my radio has been great. I get to learn about all kinds of things, stay up to date on current events, hear stories from people all over the world... It's nice. I keep craft projects nearby. If I can craft I feel productive and it keeps some of the bed rest depression at bay. Different lighting options are nice. Having your bed below a window so you can get fresh air at any time is also nice.
Colouring in books pencils pens highlighters also if you're studying what are you good or you could create story
Leg raising pillow is awesome. I have terrible edema from pots.
Outreach at the library in my town with bring out to you a bag(s) of dvds, books, other materials and they are very flexible with the return dates.
I would include a pen and paper. If I can't move around, that doesn't mean that my mind stops. I often need to write down ideas and 'To-Do" lists that I think of while relaxing.
I also have a free Solitaire card game and such downloaded on my computer to do to relax me. Also you can do searches for 'Full Length Free Movies', and enjoy. You will be surprised at how many movies, TV series and lectures are available on line. You can even find videos and movies from other countries, too. The University lectures have so many topics to choose from. There is bound to be something to interest you. I also sometimes use this time to get my sewing/mending done.
My hands use to be so tinkery... love drawing, painting, writing, playing a guitar..making crafts.. but its so wierd that i don’t wanna do any of these to keep myself busy now that im having a bedrest.. all
I have is my phone.. and still so sick looking at it. Gotta avoid fb.. some posts r really sickening..and sometimes i feel so ridiculous.. i feel depressed, worried, so helpless... so incapable.. worthless.. aaaaah! And when i snap out of my lowly moments, i Would talk to my baby.. say sorry and ask him to hold on.. pray for him.. for us.. then here comes my husband iv been waiting the whole time .. then he would do all his responsibilities for me.. but in my mind, i really feel sick of his presence-like a wanna vomit..and i dont even want him to kiss me or touch my tummy or caress me , i dont want him to touch me in any way..But i miss him when hes not around....
Really wierd and funny me.. hope this will end soon.. its my 3rd month of pregnancy..
I love hugging my pillow pet in bed, especially when I have cramps!
Can you please do a video on what to do about family who don't understand your disabilities, even when you've explained it to me a million times? My dad just doesn't get it, he thinks I'm fat and lazy. And when I've talked about getting a wheelchair he said it's a horrible idea and will make me die young :( any tips? xxx
How the fuck would a wheelchair make you die young? What kind of weird nonsensical ableist logic is that?
Blithe Dream You have my sympathy for non-sympathetic family. They can't understand since they haven't been in your situation. Yes, it's hard to keep your weight down when you don't use that much calories, but then again - a wheelchair can enable you to do stuff and get out of the house (as opposed to sitting and lying at home only).
I use always have my wheels with me. Sometimes I walk using the wheelchair for support and sometimes I drive it, depending on how I feel at the moment. Wheels are freedom and independence! People don't see that. They resent the wheelchair because it makes your difference and disability tangible, visible and they don't want to acknowledge it. They don't know how to handle it. They feel that it's better if you don't "flaunt" your needs for accommodations. Then they don't have to change anything. They would rather have you more disabled and dependent than visible as a person with disabilities roaming around free and somewhat more able. Or they pity you for exactly what makes your life work better for you, because now they can see that there's "something wrong" with you.
Long rant about my experience and perception of this.
Anyway: tell them that you want to be able to do stuff and make your life work better. That whatever you need to make that happen is a freedom and a bid for more independence. Tell them it's not a death sentence. And if they can't wrap their heads around what your disability, your body and your life is like, that's their problem. They don't have to say anything unless they have something supportive to say.
Dear,setup a meeting of your father and your Dr.
Send your father to some one whom he believes much and also can understand your situation.
I know it's been quite a long time since you posted this comment, but I just wanted to give you support and solidarity. I hope your dad and non-supportive family have either come around by now and realize that there *are,* in fact, ambulatory wheelchair users out there or you've found the strength to cut them out of your life. I've been (and am) where you are. Remember, no matter what your family says, you don't need their negativity, you're not lazy; you're disabled (or whatever term you ID with), and yeah, maybe you're fat or maybe you're not, but there's nothing wrong with either one. Rock your life, hun! Take care of yourself and I hope you're having a great day!
Thanks for this video, what to do when u you are at bed rest.
When I'm resting in bed I do all the same as you but I have a few other things I do depending on how bad I am and if certain parts of my body hurt or not so if my fingers aren't hurting I crochet, knit, color, crosswords or other puzzle books, or any kind of arts and crafts. Again that depends on if I can sit up or prop myself up. If not it's the usual. Listening to stuff, watching movies or you tube.
I also have EDS, I've been looking around for that bed desk you showed, but I can't seem to find it. Could you respond with a link to it?
I use a colouring book all the time in bed
I have a cooling mat which helps with really poor temperature control
A good thing to have for bedding is a lambs wool rug/underlay. If you're there a long time they help to prevent ulcers and bedsores. I am also lucky enough to have an electric bed (my dads friend gave it to me secondhand). It is honestly the best. thing. ever. So comfortable. As for entertainment, I have an app called DroidTV on my (android) tablet to download shows to binge on. I have a tablet 'arm' too that clips onto my shelf above my bed and holds my tablet at eye level (from eBay). I also recently got a Chrome Cast to play whatever I want on my TV. And for my TV I have a cable plugged into the audio part that runs to beside my bed where I plug in my headphones. I do this for my 3am Gilmore Girls viewing and not wanting to wake everyone else up. Also good if you have impaired hearing. Oh and I have a box beside my bed full of earplugs for a better nights sleep :)
Thank you for this lovely informative comment. I haven't quite come to terms with my diagnoses yet (diagnosed with EDS & Fibromyalgia in Nov 2014 but had symptoms 2yrs up to that time, they drastically deteriorated from that winter onwards). I'm currently bed bound, & will soon be purchasing a new bed (although sadly budget won't go as far as to one like yours - I can dream though!) I am looking into a mattress topper as my swollen facet joints & subluxing / dislocating joints are becoming excruciatingly painful, & I wondered if to get a medium/firm (not firm - too hard) mattress with a mattress topper. I am allergic to feathers, but pretty sure I'm fine with wool, & I'll have a sheet on top of that. Are they pricey? I am in the UK. My only other wish is that I could get hold of one of those plastic bottles Annie mentioned in this video, the ones here are tiny & I drink 4+ 1.5litre bottles a day, I drink from pint glasses but I'm accident prone & they're heavy! Love your set up x
oh em gee. nice list. i need to get me some of this stuff
an adjustable bed?
Wow, how did you figure out all that electronic stuff??
Alyssa I like to get the tablet arm. Do u know what your's is called, for searching purposes?
The best thing ever on the days I didn't make it out of bed was a visit from the wife and or kids.
Microwave heat pads, tens unit, tons of blankies, salt lamp, ear buds, nook, phone, tv remotes, books, pillows, tablet/phone/book rest(peeramid)..., this are my must haves.
I love audiobooks. They're great for when brain fog gets bad or you just can't sit up enough to look at a screen and your eyes don't want to work enough to read (usually brain fog related)
this is _super_ late, but dental hygiene is huge. i find that non-water disposable toothbrushes that i keep on my desk or bookshelf (which are right next to my bd and basically my nightstands) are super helpful. dental issues absolutely will frick you up in the future, and if you only have the spooons to do one thing, it should definitely be brushing your teeth.
also, a trash can/trash bag next to your bed can be super helpful to deal with all the pesky wrappers. i saw someone on tiktok with special trash bags that they found on amazon that you can stick to surfaces and that look super easy to manage, and i highkey want em
(i'm rarely bedridden for more than a couple of hours, maybe a day, at most so i don't have a ton of experience with this btw)
I am needing to be off my ankle while waiting for my third ankle surgery since the original surgery on my right ankle failed. My mom got my a DVD player and Roku. I got a hospital rolling table to do my work for my day program for adults with Autism. I got more books to read. I have games on my iPad and phone that keeps me busy.
One thing I do if I've the energy to is latchhook kits and or paint by numbers kits
Get a hat loom and make hats (and other things) while on bed rest. I am not currently on bed rest, but I thought you might like it as something to do.
If possible, someone to talk to on the phone really helps. Bonus points if they do most of the talking.
A deck of cards would probably be good if you like playing solitaire.
I like giant Lego bricks for stacking things beside the bed and making sure to make an effort on my appearance most days to remain sane. Then every once in a while I just look like a monster ate me then puked me out and of course that's when I get visitors. lol.
I need a heating pad when I’m really aching
You could always colour or draw if you like to do that
yes i love doing that i always recommend it to people to coloring with gel pens in adult coloring books cuz it needs more concentration
Are you REALLY kidding about the wine thoufh? It does help!!!
If u have a library card, & your library participates in these program, check out the Libby app (new version of an e-checkout of e-books like overdrive) & the Hoopla app ( an app that allows a certain # of checkouts for e-comics, audiobooks, music, & movies). Both if these apps are free to get & to use. I love borrowing comics.
I keep a massager near my bed. :-)
hey, where did you find that medicine holder I need a big one like that.
You should get a mini fridge
i used to read manga and books and watch twitch and youtube and then sleep in between doing stuff
Do you have any suggestions for the best way to stack pillows? Every time I try it's super uncomfortable or unstable.
I play a lot of Visual Novel games because most of them are a sort of pick your own adventure type stories that don't take a mouse and so I can play on my laptop and they are really interesting. They also have a good number of free ones on Steam so that makes it even easier. Do you have any recommendations to make a bad quality mattress comfier though? My bed is just the basic dorm room beds at the moment and they hurt a lot.
I don't know if it can help you, because it's weird and kind of dumb, but as my mattress is really old, I have two extra duvet type things underneath me, like one is under the sheet, one on top of it, and then the normal one that sits on top of me. You might only need one instead if two, depends how bad your mattress is. I also have lots of blankets and pillows, so changing my bedding/doing laundry is exhausting.
Way late to the party, hopefully you are out of that situation now, but what I do at dad's is I have a thick foam squab mattress from a camp-stretcher on top of the regular mattress, it works quite well, the underneath mattress provides support, and the on top one means it doesn't hurt if you are lying in it for hours. When I am stuck in bed the pain is in my head and stomach though, not joints and muscles, so I can't guarantee its effectiveness for that.
start a book …
You look so comfy in that bed. :-)
For me it’s more like my cloths or lack there of lol
How about knitting ? Is that too boring ?
shoot or crosheting. i love croshetting ^^
btw. i spelled it wrong
You are so sweet/ adorable!
A laptop or something you can use for streaming services for watching TV and movies (like Netflix).
Netflix or similar streaming service.
UA-cam for entertainment, education, tutorials etc. I see an amazing amount of ASL videos and documentaries on UA-cam, actually.
Writing tools of any kind.
Anything small and crafty that you can do in bed, smartly organized to be easy to move around and use: knitting, crocheting, loom knitting, small patchwork/quilting projects that you can do by hand, folding paper figures, making paper baskets from newspapers, mending stuff... Most of this can be placed on trays and small tables on wheels, and in baskets, to make them easy to move as needed. I have a bunch of cloth bags with one project in each bag, hanging on my bed post.
Music apps for streaming music and discover new music.
Hearing aids to hear the music (better). Put them within easy reach.
Headphones to not disturb people unnecessarily.
Video phone, so you can make any calls you need and like to make.
Mobile phone for texting and everything else you can do with it.
A good mattress/a good bed is way important.
Heavy duvet with chains in it might work for some, because it feels like a big full-body hug. Help with insomnia and anxiety, for example.
Something to fiddle with. Can be a shoe string or just about anything. Works for when you are restless but can't focus on making anything.
Nutritional drinks. Will keep you alive and can be stored in room temperature for ages.
Fruit in a bowl or box.
A waste basket within dropping range.
Ok,I'm out of ideas now.