Best products from r/disability

I've been bedridden for 5ish years, with some in and out in the last bit. Here's some things that helped me:

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1. Laptop and internet. When I suddenly became disabled right out of college I lost basically all of my friends. People tend to lose touch during those kinds of transitional periods, and honestly I was the friend who was always driving people places so they weren't in the habit of visiting me. Internet access helped keep me connected in some way to other people. For me, it's not the same because I have a very difficult time bonding with others in an online setting, but it was definitely better than staring at a wall.
   
   
2. Get a wheelchair. I recommend an electric wheelchair, because you will be too tired to push around in a manual chair. If transporting a big, two ton chair is something you don't think you can do, try a folding wheelchair with a removeable motor, like the Smart Drive. (They're also waterproof which can be a big boon.) Honestly, having a wheelchair so I could leave the house without being carried was HUGE for me. That and moving to a new home that was wheelchair accessible and on the bus line. I still don't go out super often, because I am still tired a lot, but it has made a big difference in my agency. (People will say "oh no, wheelchair so tragic" but fuck them. Wheelchairs are a goddamned blessing. Being unable to get out of bed sucks, and wheelchairs are the magic that lets you move around.)
   
   
3. Acceptance. For me, a really huge thing was accepting that the condition I have (EDS/POTS) is lifelong. It cannot ever be cured, only managed. There is so much going on in lack of control of your life, and as I am mildly a control freak, that was REALLY hard for me to adjust to. We are taught a lot of negative things about being disabled, but in truth humans are extremely adaptable. Much more than we realize. We can enjoy life even with extreme restrictions on us. We can adapt! This too, shall become normal. And that's actually a good thing. When you accept that your body may just suddenly quit on you, you can make better decisions on how you spend the energy you have on good days. You can enjoy life with what you have, and know that it may not last. But that's okay. This too shall pass. Roll with the blows. Making friends with other disabled people, disabled people with conditions all over the spectrum, can help you see that being bedridden is just another way of life. It's normal, and a lot of people live normal, happy lives while mostly being in bed. And that's okay.
   
   
4. Don't overdo your good days. Many conditions have good and bad days. If this is true for you, you'll be able to do more some days than others, and it can be tempting to get everything crammed in that you can. For folks who are generally healthy but have been bedridden due to a temporary illness, pushing through can help them get rid of deconditioning. If, like me, your illness affects bodily functions necessary to sustain life, then pushing yourself on good days will actually damage your organs and make you sicker over time. And man, did I push lol. Instead, do **less** than you are physically able to do on good days. Leave yourself a lot of comfort cushion. The goal is to try to do just a little bit every day, whether good or bad, and hold on to that. Don't ever start doing more until you can go two weeks in your routine without any problems. This will protect you from huge backlashes and help you stabilize your baseline health. (This was a really hard lesson to learn!)
   
   
5. Hobbies, hobbies, hobbies. Seriously, connect with things you love that you can do while sick. It is so easy to lose sight of yourself and the things you love when you are perpetually in a crisis. Read. (With brain fog, I can't read well anymore and I've always had a hard time understanding audio, so I do both at once and that seems to work for me.) Draw. (Get a drawing tablet, Bamboo Create is a good start, or get a scanner for traditional arts.) Write. (If you like to write, you can do it on your own or start working on a project with others online.) Learn to program. (I develop a type of video game called a visual novel!) Knit. (I can't get ahold of the tension, but I use a mechanical knitting machine-- this is the best one for the price and it saves a lot of fatigue as well.) Try needle felting. (You can make cute 3D animals with wool while working out your anger/frustration by stabbing things with needles.) Learn to mold clay sculptures. (I eventually want to make to-scale Pokemon figures.) Watch movies/shows. (I watch a lot of anime on crunchyroll or from nyaa torrents.) Try tabletop gaming! (Like Dungeons and Dragons type stuff, but there's lots of different genres. Ryuutama is a really nice, relaxing one! Exalted is about being a demi-god badass. Blue Rose or Queen's Cavaliers are both really neat and diverse worlds. There's something for everyone, plus can get a lot of social activity in without much physical requirements.)

Thick curly hair clean & tamed:

I am a fan of dry shampoo. Brands like batiste and shhh! Can be found at Target, Walmart, five below. IT'S BEST applied before bed, so it's absorbing oils overnight, comb out in the morning.

I have long hair that I sleep with it in braids or two buns on either side of my head. Don't put your hair up tightly, or you risk traction alopecia.

Using a wide tooth comb on wet washed hair with a leave in conditioner will help battle Frizz.


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Clean and odor free:

The parts of you that stink are going to be creases and folds; so daily with mild soap (I like a small bit of dr. Bronner's of your preferred scent mixed with a basin of warm water, use a washcloth to apply to your dirty areas, then wipe with a rinse water rag twice to remove soap and dirt, then pat dry.

Areas of focus:

Face, neck, chin (especially creases if you have a double or triple chin),

Armpits

Under breasts/between breasts if you have big boobs.

Belly button

Genitals/groin, lifting under your gut if you have one,

Butt crack, under-cheeks if you have a big butt,

Hands

Feet.

For any open sores, clean according to your doctor's instructions. I have lymphedema which has a smell when it leaks. I use abdominal pads to soak up most of the liquid and medipore to cover the whole pad and adhere it to my skin. If it's very bad smelling, I change the dressing twice a day using skin prep pads to avoid skin tears, before applying the adhesive. Then I'll wrap that area with a clean roll of reusable fabric bandage and I have sometimes sprayed the fabric with a bit of febreeze on the side not touching my skin, or kept inexpensive activated charcoal packets tucked under the fabric but above the dressing, if that makes sense.



Looking your best re: skin flaking;

If your skin is flaking constantly and you don't have a diagnosed reason, your skin is most likely too dry, or you are not exfoliating well. I exfoliate twice a week by taking a long shower, but if you can use a bath to save water, that's better. (I can't get out of a bath on my own.)

Let your skin soak/become wet for 10+ minutes.

I use both a product exfoliant, (exfoliating body wash + scrub), and once that's done well I use a Korean body scrub washcloth like this :

https://www.amazon.com/dp/B07SG4YWYL/ref=cm_sw_r_cp_awdb_t1_p9RKDbDQZ4C7H

You can find them online or at Daiso for a dollar or so each, they're machine washable and very effective. You don't have to apply a ton of pressure and they don't damage living skin, only the dead skin.

After I have rinsed, I use a body oil or body cream, depending on the time of year and how my skin is behaving. A lotion with lanolin, cocoa butter, or almond oil should do well. I like natural lotions best.

As for clothes that look good, I find I feel best about myself in a maxi-cut skirt, as long as it's not so, long or loose it catches my wheelchair wheels. I look dressed up without having to have freshly shaved legs or a perfectly toned form. I pair bright skirts with a simple blouse that's roomy but conservatively cut, and then I pair a cardigan, denim jacket, or blazer if it's likely to be cold. I'm in clothes that are soft fabrics, not restrictive, and I look put together.

Simple jewelry like earrings OR a necklace, a ring, and a watch on opposite hands, plus a coordinating purse helps you look put together.

I also buy pretty patterned skirts to pair with a solid top, or I wear a patterned top with white jeans and a black blazer, etc.

Alternatively, a monochromatic look can be great, black pants, black pumps, white blouse, black purse? Add a red beaded chunky necklace, tiny silver and pearl ring, red headband or glasses, and tie a red and white scarf to the handle of your tote and you've gone from ” Olive garden waitress” to ” put together."

Keep a lint roller or brush in your car or tucked into a bag to clean off crumbs, pet hair, etc.

I hope this is helpful, feel free to ask if you have questions.

This overlaps with a previous comment a bit, and may be way too detailed, but just in case...

When I had this same issue for a long time after a surgery I tried a bunch of things that didn't work, so I decided to focus on getting more out of the liquids I was able to drink. I had good results from products designed for rehydration after sports, illness, or hangovers. But only the healthy ones with no sugar or artificial colors/flavors/sweeteners. Things like Gatorade make it worse with all their sugar (which the body must use more fluid to process fully) and artificial ingredients. Tried Pedialyte too, but same sugar issues, tastes icky, and is too pricey.

The very best were Nuun tablets, which you drop into water. They have lots of different flavors, and have a hint of effervescence at first, so without trying I found I easily drank more overall. Some of the flavors, like grape, fruit punch, or watermelon, I adore because they remind me of yummy childhood drinks that were terribly unhealthy. But the Nuun tablets have natural fruit flavors, and are sweetened with monk fruit, so just healthy stuff. They have lots of electrolytes, and some vitamins/minerals that help your body retain more fluid. I buy them by the box on Amazon, and they have sampler boxes that let you try several flavors first. Many healthier markets carry them too, at a higher cost, so you can try them first Wish they were cheaper in general, but nope. :-(

This is the nuun site for more info: https://nuunlife.com/. And here is an example of a combo pack on Amazon (but if you search for Nuun, you will see all sorts of packs and prices): https://smile.amazon.com/dp/B019GU4J56/ref=cm_sw_r_cp_apa_i_FoIDCbQ5RF68G. Just avoid the nuun tablets with black packaging, as they have caffeine in them.

If you go on Amazon and search for "hydration," the first batch of things that comes up will give you some really good options.

I also tried this concentrated rapid rehydrating liquid called LyteShow Electrolyte Concentrate that you can add to cold drinks, which worked well, but the Nuun tablets were much more practical (lightweight instead of heavy bottles of liquid, and more tasty, and cheaper). https://smile.amazon.com/dp/B00EISFBYA/ref=cm_sw_r_cp_apa_i_qMIDCbC6MJP1S

I also switched to pink salt then, as it has tons of trace minerals (needed by the body to fully utilize your fluids), and that helped, surprisingly. Also just tastes much better! On bad days where I was almost fainting, I would take a mouthful of water and toss back a big pinch of that salt. It reduced the dizziness. But after that I began using the nuun tablets, which helped all around.

I ate as many juicy foods as I could then, like citrus, cucumbers, melon, lettuce, apples and pears. But I could barely eat at the time, so it wasn't enough by itself.

Switch to a really high quality multivitamin too, especially if your hair is falling out (mine did too). Avoid gummy vitamins, cheap stuff from the drug store, and brands known to source unregulated ingredients from China (like the NOW brand).

I hated the smell of my tap water which didn't help with drinking (and my city had good water), so I learned to fill a couple pitchers and leave them sitting out, uncovered, for 24 hours, which allowed all of the chlorine to evaporate.uch better then.

Oh, kind of random, but I also started keeping the mini cans of V8 tomato juice on hand (regular kind, not the low sodium). Normally I don't like it much. But when I was so dehydrated, it tasted sooooo good for some reason. Probably I just needed the salt to help me better retain fluids, but the extra dose of veggies probably helped too.

I think that's all my hard-won hydration tactics, but it all worked. Hopefully something in there helps you, so you can start feeling better. If I think of anything else, I will wander back. Good luck, my dehydrated friend. 🙂

(Am on my phone, so please excuse bad typing.)

I have trouble standing and walking, but am fine when sitting, so most of my advice is from that viewpoint.

Swiffers for everything! Mop/sweeper, duster, dusting cloths, etc. They're really efficient and disposable so I don't have to deal with things like mop buckets, dirty mop heads, cleaning feather dusters, anything like that.

One of those extendable pincher things to help pick stuff up off the floor.

An extendable scrubber for the bathroom. The shape makes it really easy to get into corners.

A clothes folder makes it really easy to fold your clothes, and I can use this on my lap while sitting down in bed.

A walker with a seat makes it really easy to get around to do things and has a seat for when I need to sit down. The basket that most come with helps to carry supplies from one room to the next.

Stick vaccums are super lightweight and easy to maneuver even from a couch or bed.

A scrubbing attachment that goes on a power drill is so helpful when you don't have the strength or stamina to scrub by hand.

I swear by all of the Kaboom products. All of them are no-effort cleaning supplies. They have toilet cleaner, mold and mildew cleaner, and, of course, the famous shower foam.

An automatic vacuum like a roomba is great for most people, but I've never had one so I can't comment myself.

Soak your dishes. There are special products that help get dried on food off your dishes, but I've found that just soaking them in hot water for 20-30 minutes before trying to wash them gets most stuck on food off. For really tough, baked on gunk, add a dryer sheet to the water. Sounds weird, but it helps soften up the crusty blackened burnt on food and it comes off easily.

For food that's stuck on the inside of the microwave, take a cup of water, add some lemon juice, and microwave it on full power for 6 minutes. The food will wipe right off.

I might think of more things later. If I do I'll come back and edit this post.

I can totally relate to your situation, I myself have no ability to clean my house, do anything hygienic, and have no job. So I am highly dependent on many, if not all of the services that you are looking for.

I first just did a simple Google search for "home care based services colorado", and came up with quite a few results that might work for you, including what's called "Home and Community Based Services (HCBS)" and "Aging & Disability Resources for Colorado". Here is a link to A List of Colorado Programs. If Colorado's ADRC is anything like Washington's, call up your local Social Security office and ask about starting the process for an ADRC social worker, and to have them come out to your house to assess you for home care services. Because your boyfriend is on actual disability, he might have an easier time going through the process. I do know of people with schizophrenia and other such mental illnesses like depression, that have been able to receive this service as well. After you are approved, they will assign you with a care company that sends out a caregiver for a preapproved set of hours a week to help you with cleaning around the house, cooking meals, etc. An added bonus is that you can get a doctor's note to pronounce your pets as medical necessity, like Seeing Eye dogs are, but these would be "emotional service" cats. Then after that your caregiver would then be able to clean the litter boxes for you as well from then on.

Since you both are not married, you both will have to go through this process separately and I'm assuming would be assigned a separate social worker. Meaning one person may be eligible for more things than the other, and I'm sure the social worker will be more than willing to help you through all this.

As for the food, I too really hate reheating food in the microwave and get tired of processed foods. I invested in a FoodSaver | non, which vacuum seals food and extends their shelflife by months. I'm sure you can easily find a used one on craigslist or goodwill. The bags are a little spendy, but you can reuse them quite a few times if you wash them well. Just pull a preprepared meal or vegetable from the freezer and warm it up in a pot of boiling water. I'm sure there's a bunch of YouTube videos with good "How to" guides for getting the most out of a FoodSaver.

As for finding work as a person with a disability, I can totally relate to this, and have a few blog posts floating around in this sub getting into the different things that I do to make a little money to survive. Like using referral links – as I did above – to make a percentage off Whatever purchase is made from that link. I also make designs and post it to my RedBubble store for people to buy them on T-shirts, posters, pillows, etc. Totally not trying to link bait everyone. It can be really slow or really good passive income, depends on how much time you put into it. A good subreddit for making money online is /r/WorkOnline.

I hope all this helps, sorry I don't know Colorado law and there couldn't be more helpful with that. Let me know if you have any other questions.

C5-7 quadriplegic. If he's a Para, chances are he's got more function than I... If I can figure it out, surely he can; just get one in his hands and let him play. If not yours, that's what store demo units are for.

Couple aids I use-

A case like this one- it has the little cutout at the bottom so you can add a wrist strap, SO much easier to grab on to quickly/ can just hang my phone off a hook on my chair: https://www.aliexpress.com/item/Fashion-Korean-Style-iFace-Case-For-iPhone-6-6s-5-5s-Cases-Durable-Candy-Color-Shockproof/32691225328.html

An elastic loop on the back: https://www.amazon.com/gp/product/B01MEHPUSR

And as for a hook, it's far easier and cheaper to look for kids' stroller accessories than medical-leaning hardware. Usually medical/ health stuff gets a crazy price markup. Here's the hook I use: https://www.amazon.com/gp/product/B002MXP3SM

And a bonus accessory, the cupholder I use on my chair... can throw the phone in here too when in a hurry: https://www.amazon.com/gp/product/B005G14BIU

Cheers, hope it helps!

LOL, it actually is great for times like that. It's probably a little cumbersome for daily use and there's a bit of a learning curve for maneuvering without kicking it over (which I still do TBH) but it's so much better than trying to get through an event without an assist.

https://smile.amazon.com/Travelon-Walking-Seat-Cane-Size/dp/B001CZMXDE/

This is the one I use and it serves me pretty well!

https://www.amazon.com/No-Rinse-Shampoo-Cap-5-Pack/dp/B009I12STI

A bit pricey but they are the only thing I found that truly gets hair clean without water. The no-rinse shampoo foam just doesn't work as well.

I use something similar to this:

https://www.amazon.com/Dustpan-Extendable-Handle-Upright-Kitchen/dp/B07PMXHG9W

Notice the "rake" built into the dustpan. This helps remove my "tumbleweeds" (Golden Retriever fun & dust) from the broom bristles.

Just wanted to mention that they sell remote controls on amazon and they are really cheap! My husband found them recently and it changed our life for the better! Here the one I use but there are many types.

https://www.amazon.ca/BESTTEN-Wireless-Electrical-Automation-Certified/dp/B073RF6PJP/ref=sr_1_18?keywords=remote+control+for+switch&qid=1556907280&s=gateway&sr=8-18