I’ve decided to update and expand on my perfecting bed life blog post I wrote a few years ago. Some things have changed since then, some haven’t, but I still spend >99% of time in bed, not even leaving it to go to the toilet. Over time, I’ve found some things that help me, and maybe some of them will help others who are bed bound for whatever reason.
I’m splitting this into multiple blog posts as there’s a lot to it. I’m making no promises on when any parts will be added, as my health is too unpredictable. Pictures may be added in the future when I’m more able to take them (or ask someone else to take them for me).
All links are to Amazon Smile or Google store to show examples. Some items may no longer be available, and there are probably newer versions that are better. It’s taken me 19 months to write this, but hopefully it’ll help someone.
One of the hardest parts of being stuck in bed is loneliness. I’m lucky enough to live with my spouse, but I can go months at a time without seeing anyone but him and my care workers, which can be quite hard (this is not because I have no friends willing to visit, but because visits are very draining and often I’m just not well enough). Luckily, some awesome people invented the Internet and gadgets that use it, so I can still talk to people (and write this blog). These are those I use the most.
If I’m not asleep or resting, I’m almost certainly on my tablet. I’ve been through a few of them, but for my particular needs, my tablet is probably the item I rely on the most. It takes the place of a smartphone for me, as with my coordination problems and vision issues, the larger screen makes it much easier to use.
My main use is for communication. I use WhatsApp or Discord to talk to Johan and Sammie, Twitter and Facebook for talking to friends, and as a text to speech device when I’m nonverbal. I also read emails and text messages (forwarded from my phone), and very occasionally even send them or reply.
My other main use is as an entertainment device, whether that be playing games, reading library ebooks, blogs or Reddit, or watching YouTube videos. I also use it to send videos or streams to my telly and podcasts and music to my Google Nest Mini.
I also use my tablet to set reminders, organise things like my calendar, shop on Amazon, track where Johan is via GPS (when he’s running and with his permission), find stuff out and sometimes just look at pretty or cute pictures. I really hate being separated from my tablet, even for short periods.
You can buy a tablet in lots of places. I have a Google Pixel C as I multitask a lot, need a 10 inch screen, am heavily invested in Android, need to be able to root it, and as it was being discontinued it was a good price. (Since writing this I almost destroyed the charging port on my original Pixel C, but couldn’t find a newer tablet I liked so found a reconditioned model on eBay and gave Johan my original one as he could still charge it.)
If you’re using one as heavily as I do then I’d recommend getting a decent one, especially if it’s a communication device as well, but for just Facebook, Netflix and YouTube a low cost one such as a Kindle Fire HD 10 is probably okay. If you’re not heavily invested in Android then an iPad may be a better option as they tend to just work better and even the cheaper ones are decent. Some people might prefer a smaller screen size, in which case 7, 8 and 9 inch tablets are available.
I’m cheating a bit here as what I have isn’t really a laptop but is actually a large Windows tablet (Microsoft Surface Pro 4) but with the keyboard cover that’s how I use it. I was initially hoping it would replace my Android tablet but it’s just that little bit too big and doesn’t have a large swipeable on screen keyboard so that didn’t work out.
My Android tablet is brilliant, but there are some things that are just much easier on a device designed for proper multitasking, and is running a desktop operating system. My main uses for my laptop are writing blog posts (as it’s easier than on my tablet), shopping anywhere that isn’t Amazon, especially food shops (as I have it set up to automatically input my address and card details so it doesn’t matter if I can’t remember them), video chatting with Sammie, and fixing my tablet when I’ve broken it for the fourth time that week (as I keep messing with it rather than it being unreliable). I also take it with me into care homes when I have respite and I often use it instead of my desktop computer as it’s less overwhelming. The touchscreen is really useful and I forget I don’t have it on my desktop.
I bought the Surface Pro 4 and Typepad (keyboard cover) on Amazon, but you can get the newer versions (and many other types of laptop) in many places. For most people the Surface is overkill and they can get a much cheaper laptop instead, though they may also be heavier. If everything you need it for is browser based, then a Chromebook could be the best option (especially as the newer ones also run Android apps).
A note specifically about using a Surface with the Typepad as a laptop: unlike a proper laptop, the Surface won’t stay open if it’s leaning forward, if you’ve got it resting on your legs with your knees up in bed. My solution was to buy a case with a stand that I thread through the clips on the Trabasack I use in bed, which works but the specific case is quite expensive (on top of the cost of the Surface and Typepad). It was worth it for me (especially as Johan often uses it when I’m not), but unless you need a lightweight, powerful touchscreen Windows device, I’d suggest getting a proper laptop or 2 in 1.
I use this for the same stuff I use my laptop for, but also computer gaming (mostly World of Warcraft these days). I have it set up over my bed, with a dual monitor mount screwed onto my overbed table (not the most stable method but it works), and I have my keyboard on my lap (usually on a Trabasack) and my mouse to my side. It’s been built specifically for gaming (by Johan), so it’s overkill for most people, but when I’m well enough to use it it distracts me from how ill I am better than most other things. As I have two monitors, I can be video chatting Sammie while playing WoW on the other screen, which is awesome. I do need help getting on and off it, and I’m not well enough to go on it as much as I like, but it’s the one hobby from before I got ME that I can still enjoy.
I use my phone a lot less than most people, as my tablet takes over the role. Its main purpose is to be a 4G hotspot if my broadband dies or I’m in the care home (or the rare times I actually go outside), but I also use it for text messages and buzzing Johan’s phone, via an app on my tablet. I also use it for taking photos as the camera is better, and quickly looking stuff up when I’m doing other stuff. Some people find a phone easier to use than a tablet because it’s smaller and can be operated with just your thumb if needed.
My current smartphone is a Samsung Galaxy S9+ Johan gave me after deciding he wanted a new iPhone, but there are lots available and what is most suitable depends on your needs and budget. I put a cheap case on, and a strap that makes it much easier to hold and means it doesn’t go flying when my hand or arm spasms.
Google Nest Mini
I mostly use my Google Nest Mini for home automation so will go into more detail in another post, but it can also be used as an intercom if you’ve got another one in your home (as well as my room, we have one in the living room, one in the kitchen, and an older Google Home Mini in Johan’s room – we got free Nest Minis which was cool). You can also make phone calls directly and send text messages using IFTTT.
Before I had the Nest Minis, I used to use a baby monitor to call Johan through when I needed him, as sometimes I’m too weak to press a button and it worked with the text to speech app on my tablet. If I didn’t have that issue, then a call alarm or doorbell works well (call alarm is more expensive but some have separate buttons for needing something and an emergency, or you can set up a system using a doorbell like one press for needs, three presses for emergency). Amazon’s Echo Dots are also an alternative, and there are more expensive versions with screens and better speakers.
There are privacy concerns when it comes to smart speakers as they send what you’re saying to their servers. For the Google Home devices, you can turn on the start and end sounds under accessibility so you always know when it’s recording you. I also find this helpful to know if I’m speaking loud enough for it to hear. I also go through my activity every so often and delete anything too private (your activity can also be deleted automatically after 3 or 18 months).
Low tech, but useful if you can’t speak and can’t use a tablet or phone for text to speech for whatever reason. Mine we made with a qwerty keyboard on one side and things I need most on the other, printed onto paper and then laminated. If I can see, I can point to what I need on there. If I can’t, then someone can read the options out to me and I can select what I need via whatever method I can (nodding, thumbs up, blinking, heavy breathing). I take it with me to hospital appointments and to the care home, just in case.
Low tech again, but good for giving information quickly without needing to speak. You can buy some ready made, or make your own using paper or card (and a laminator to make them stronger and slightly waterproof). I have some from Stickman Communications and they’re useful.
Health Information Sheet/Booklet
To be honest, this is useful for most people, but especially people who have complicated or rare health problems. Mine is two sides of A4 with the most important information on it, such as personal information, allergies, conditions and essential dos and don’ts. It’s been incredibly useful. I have mine laminated so it’s harder to lose and a bit more durable, but you could just have a copy folded up in your wallet just in case of emergencies. A booklet has the same kinds of things, but can go into a bit more depth if whoever has time to read it or needs to know more (I’m still working on mine). In some areas the NHS has Health Passports that serve the same purpose.
Care Information Book
If you receive care, this makes things much easier. It’s like a care plan, but one that actually works. Mine has my important information, my routine for lunch, afternoon and evening calls, instructions on how to do tasks like brush my teeth or make my drinks, and simple explanations of how things affect me. The care workers who’ve read it have said it’s really useful and they wish everyone had one. Mine took 4 years to do due to cognitive problems (and issues with care agencies that meant I couldn’t get into a routine). I have an adapted version I use for when I go into a care home for respite, with more emphasis on how to make things easier for me, as I can’t follow my normal routine.
Care Call System
This I have but isn’t massively useful for me, but we already had one installed when we moved in and the connected fire alarm does make me feel safer. These go by various names and often are provided by the council for a small weekly fee. They involve a box that connects to a call centre (usually via a phone line, though ours is separate from our main one), then a button on a pendant that you can push if you need help.
The first problem we have with mine is that when I’m really ill (and so most likely to need help) I’m also too weak to push the button. The second problem is that the noise the system makes when connecting makes me go non verbal, which means in an emergency I can’t communicate through it (and if I can use my tablet, I can text 999 if I need to).
It is connected to the smoke alarm, which means if there’s a fire and I’m home alone they will contact the fire brigade for me (and they know I’m bed bound and can go non verbal). The downside is the smoke alarm is super sensitive, so it goes off if someone cooks with the kitchen door open or has a steamy shower. When that happens whoever caused it can tell them that everything is okay, but the noise of the smoke alarm and the care call system combined make me non verbal and really ill.
For those who can press buttons, live alone or don’t go non verbal due to loud noises (or live somewhere they can turn the noise off) it’s a really good system. I keep paying for it (through my rent) because if there is a fire or someone breaks in while I’m able to push the button but I’m alone, they can get me help (their response depends on what you need, but can include sending the police or contacting a relative).
These are often available via the council or social services, but it’s also possible to get one privately. They have different names such as lifeline or telecare, and have different options and sensors depending on your needs.