Chronic illness Bed Set-Up Tour | Mostly Bedbound Bedroom | Severe ME, POTS, EDS
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- เผยแพร่เมื่อ 4 ต.ค. 2024
- Chronic illness Bed Set-Up Tour | Mostly Bedbound Bedroom
Tour of my bed and nightstand etc after years of being mostly bedridden, bedbound or housebound.
Please go ahead and buy the wedge pillow if you want it now, Amazon have them. X
Oh my gosh, thank you so, so much!
Very well done video my friend.
Thank you very much!
May I ask, could you hear me okay in this one, Ry? I can hear it very well but just want to check due to that other comment I received, as it’s important to me that I do consider everyone here 😊
@@GeorginasJourney it sounds fine to me. I had no issue hearing what you were saying.
It is a bit difficult because of the distance to your device, some videos harder than others.
This was my first time putting the tripod about a foot further away & was necessary for the wide angle needed here, but no other videos of mine are filmed this far away 😊
🎉I do the roller-thing in my bed, too 😂. Couldn't live without it.
It's so good haha, great minds think alike! 😂😂 I even had a mini dustpan & brush for the bed at one point 😂 but it didn’t work out with the hair loss 🙈
@@GeorginasJourneyOh yes, hairs 🙈🙈🙈. I think because we are in bed most of the day, it's very important to have it clean and comfy. Also the roller-thing and making my bed helps me to separate day and nighttime (I try not to sleep daytimes, but sometimes I have to).
😂 My mother adapted the roller for cat hair everywhere 😂
What a great video! Many great ideas. Some I use myself (EDS, Fibromyalgia, POTS), others I certainly will be trying now, thanks. New subscriber.
Ah amazing, thank you so much! Glad it was helpful!
If your budget allows, I'd 100% recommend a profiling/adjustable bed. Mine was about £350-£400 in 2017 and i couldn't live without it! It was the cheapest one I could find and it's still so great! Apart from that, our setups are very similar!
That was such a good deal! ☺️ The cheaper ones tend to be about £800 these days & I sadly can’t get one as I keep ending up in unsafe housing & having to move every few years, so an adjustable bed isn’t in the cards for me until I (hopefully, one day) have housing that’s safe & at least somewhat suitable for me 🤞🏽& so am not needing to move it every few years
I love your positive attitude
That’s so kind of you, thank you! ☺️😊
I like the idea of a spray bottle for when I get hot flashes from POTS. Summer is coming up.
Good thinking! Good to be prepared!
Freshwipes have really helped me, both the body wipes and the rinse-free shower caps. I also have a orthopaedic wedge pillow for my POTS, which has really helped. It took a little while to get used to sleeping on a slant, but it has reduced the symptoms I get when I first wake up.
That’s a huge win with the wedge pillow for morning symptoms! ☺️
My boyfriend put something under the two legs of my bed by my head so my bed slants.
Great video idea! ❤Thank you!
Thank you! ☺️☺️
Sry late comment , but wasn’t feeling up to it yesterday, I like your organization and I got a few ideas that I may try , thk you so much, you look terrific , sry you were getting short of breath, sounds like me on that😮.❤️. hope you get the wedge pillow , let me know if that helps
Thank you! My friend at uni kept encouraging me to leave a few of the breathless moments in a few years ago, but it’s only neen in the past year or two that I’ve started doing it, but I still remove most of them as I worry it’ll make the videos uncomfortable to watch, even though, like you, it’s just our normal 🫂🩷
thank you so much! this is so helpful!!
So glad it was helpful! ☺️
I play with filters on Snapchat then edit them free on youcut to help me get through the boredom its like learning to edit film while stook in bed x anyway all my love x one day we will have a cure xxx
Glad you’ve found something you enjoy! I honestly do a million different things in bed haha, although a lot of medical & housing admin too which is exhausting & boring 🥲
I like to keep books near my bed and pretend like I’m well enough to read them! 😬
I have 2 at the end of my bed that have been there since January 😂😂
Oh yay the diary I sent you!
Also, I’m impressed you manage to keep the AirPods in with a headband! I have Bose Quiet Comfort earbuds and I tried keeping them in with a headband and I could not get them to stay in whilst lay down.
Thank you so much Lucinda, it helps me immensely ☺️ hahaha, it definitely is better than nothing, but they do still fall out, gravity is not on our side! Also, I’m impressed that you spotted that, I wonder if I’ve confused anyone & they now think AirPods need a headband to stay in even when sitting up 😂😂
❤
I have a box exactly the same on my bedside. Its a pretty box but its full of meds. Full to the brim
I resorted to removing the boxes & leaflets & decanting some into smaller bottles, not sure if that could help you if you’re struggling for space too
That’s such a good idea. I have a trolley by my bed and have tried to organise it with containers but they’re overflowing and muddled all the time. I might try the box idea as at least I’d be able to put a lid on it all! 😂
Thanks for sharing this. I have some of those ear defenders from my days working in industrial jobs. I can never wear them though because they push on a nerve around my ears (that shouldn't be located where it is and has never been explained) and make me nauseous. Instead, I have some conical earplugs that attatch to a band that goes under my chin. I also have a waterproof mattress cover just in case my bladder lets go during one of my nocturnal seizures. Sending Spoonie Hugs and Love 🥄🤗💜
I remember you saying about that nerve, the ear defenders are excruciatingly painful for me too, but probably due to a mix of reasons. I’m glad you’ve found some things that work for you 😊
Hello Sweetheart! Do you have a grabber to pick things up that may have gotten dropped on the floor or even to pick up some things that may be a little hard to reach? I have one but have found it awkward to try to pick up some items because I don’t have enough grip strength in my hands to lift bottles or tubes or anything that is bulky. Was wondering if your phone can be taken off the wall and put on top of your bedside cabinet to make it more reachable? I have a corner in my kitchen that looks like a hoarder lives here because I spend my life in the kitchen in my wheelchair or in my bed. I have to have everything I may need within reach, too. I am so thankful for my iPad because my vision is so poor I cannot read or hold books and I have my Bible, books, songs, games, etc all in one tablet! I love you and pray for you every day!❤️
Thank you ☺️ I do have a grabber, yes! I have a small & big one now! 😊 your set up sounds good, well done 🩷
What’s the cooling spray?
It’s like a fine mist spray that cools you down temporarily, if you google cooling spray, several should come up ☺️ I got a pack of 3 from Amazon 😊
What causes you to be actually sick ,is that not the ME illness is that stomach issues when I see those sick bowls at hospital I'm like looking around to see if anyone picks one up am so paranoid about anyone being 😫 sick
I do the same thing in hospital & wear ear plugs & ear defenders there as I have emetophobia too
Are you familiar with Dr Sarno? ❤
My own drs & specialists treat me based on my medical test results, I don’t take advice from random drs (even famous ones) who don’t know my medical history 😊 I am, however, familiar with proper hamster care, so you may enjoy my hamster videos more than my health ones 😊
Płease be closer to the mic or use a wearable blue tooth mic
I usually am but you can probably tell that it wasn’t possible in this video haha, please feel free to use earphones or headphones if you’d like to ☺️
I’ve watched it back to see if I needed to re-edit & re upload this, but there’s actually nothing wrong with the audio, so this must be a problem on your end I’m afraid. You can also use the autogenerated captions to assist you if you’d like though 😊
I use headphones and can hear it fine just as a bit of help