As lockdown restrictions are starting to ease, many people will be cherishing the freedom that they have missed due to the pandemic. However, for some people with ME/CFS, staying at home is a normal way of life as their condition can make it impossible to be able to go out, something that many people take for granted.
As May is ME Awareness Month, and as we hear about more and more people living with similar symptoms caused by ‘long-Covid‘, we wanted to highlight that for many people with this condition every day can seem like a lockdown.
Danni Brennand, a blogger at Dannilion, has let us share their blog post that gives useful tips on how to live from your bed.
For the past few months, I’ve spent nearly every moment in bed. It doesn’t look like I’ll be leaving it any time soon so I’ve been working on ways to make it work better for me. The tips I’ve highlighted below work really well for me – others may find it helps, or not.
Clothes that are comfortable to wear in bed if you have ME
Comfort is the top priority. Most clothes are not comfortable for lying in so don’t get worn. Some clothes are good though – t-shirts and leggings, shorts and skirts tend to work well for me.
Pyjamas and night clothes are also good, and some of them can even pass as daywear (I have an awesome set of pyjamas that look like a long top and leggings but are amazingly comfortable).
I find having a cardigan or zip-up hoodie is good as it’s easier to put on or take off when cold than a jumper.
Take a look at our new range of accessible and adaptive clothing on the Disability Horizons Shop.
How to bed bath easily
When I’m too ill for a proper bed bath, bath in bed wipes is often a pretty good substitute. These wipes are specially designed to be used for washing in bed.
They’re bigger than baby wipes and can be microwaved to warm them up. As they don’t require extra water or drying afterward, it takes a lot fewer spoons to be washed with them. I still like a proper bed bath when I feel up to it though.
Why not try FreshWipes for an easy way to keep clean in bed or your chair? You can also read our FreshWipes review from our writer Lucy.
Washing your hair in bed
There are various ways of dealing with hair. Dry shampoo works for a few days, but I find it doesn’t do a great job when it has become really greasy. There is a no-rinse shampoo you can get (it works best if you can sit upright for a couple of minutes) or even better, a shampoo cap that has the no-rinse shampoo in it.
The shampoo cap can be microwaved to warm it up (it makes it a lot nicer) and we’ve successfully used it with me lying down, kinda on my front and side.
For proper hair washing, an inflatable basin makes it a lot easier. If you struggle at all to hold your head up get one with an inbuilt cushion.
In fact, do so anyway if you can as the extra cost is minimal and it makes it much easier and more comfortable.
I find that kid’s 2 in 1 shampoo works for me, as the scent doesn’t bother me and it means I don’t need a separate conditioner (so fewer spoons are needed), but use whatever shampoo works for you. I find that having a towel around my shoulders works to catch drips and makes it easy to be brought over my head to dry my hair afterwards.
Also, remember to put towels (or even a bin bag) under the basin so if it spills it doesn’t soak the bed. Plus, make sure your carer doesn’t remove the bucket the basin drains into before it’s finished draining – we got a clean floor out of it but if you’ve got carpet it’ll be a bit soaked!
I ended up getting all my hair cut off after a really bad relapse as it was just too knotted to deal with and I wasn’t well enough to have it detangled, even by someone else. If you can have it brushed every few days, then having long hair in a plait or two in between is a good way to stop it knotting too badly.
Scarves are really good for both tangle prevention for long hair and hiding greasiness for any length of hair. I also have a turban that I can just pull on when I’m not feeling well, but my hair feels wrong – eBay is a good place to get that sort of thing.
Maintain your hair from bed with our inflatable basin, along with our hair washing brush, brush and comb – all with long handles to help you reach your hair easier. Or try the new No Rinse Shower Caps.
Supportive cushions to help you get comfortable
Cushions and pillows are essential for comfort. The best I’ve found for me is a U-shaped body cushion. It’s absolutely huge, 12 feet long, but it supports me on both sides and also makes it easier for Izzy to position me.
Before that, I used lots of pillows that worked okay but tended to move. Some people like squishy cushions but most of them are too small to work for me most of the time. They’re great for holding something in place though.
Overbed tables to support you in bed
An overbed table makes life much easier. I use mine for my computer monitor now, but in the past, it was used for my laptop, meals (when I could sit up) and other stuff.
I now use my Trabasack for meals and other things as I only have one overbed table, but I’m considering getting a second one at some point for other stuff.
They’re not that expensive for the basic ones, though if you’re weak you may need help with adjusting them. Those that are easier to adjust tend to be a lot more expensive, but may be worth it if you have the spare money and would be able to work them.
Find out how the Trabasack Hook Tape and Media Mount can help you work, eat and play from your bed.
Toileting techniques to use in bed
If you’re living life completely in bed, then toileting will be done either by bedpan or incontinence pads. This sucks, but unfortunately, it’s something that just needs to be dealt with.
If you’re well enough then having a commode next to the bed is a lot easier as it’s more like using a toilet, but those who can’t sit up at all without fainting or falling off (like me) don’t have that option.
There are different styles of bedpan so don’t be afraid to try different ones to find one that suits you.
There are also urinals for both men and women that might work, though as I tend to poo without warning that wouldn’t have worked for me.
When my incontinence got bad pads became easier, and can be changed pretty quickly once you and your carer know what they’re doing. It’s not what I would like, but I find them more comfortable than using the bedpan.
There are bed-changing pads that will help in case of accidents or spills. Some can even be tucked in to stop them from moving too much.
Take a look at these unisex urinals for easier toileting, particularly if you have to go out.
Sheepskin bed toppers to keep you cosy
A sheepskin is wonderful for helping to make the bed more comfortable and helping to prevent bedsores. In most places, they’re rather expensive, but Ikea does a decent one for £30.
They’re pretty hard-wearing but can’t really be cleaned that easily so bear that in mind. That said, mine has managed with just patch cleaning for several months now and though it’s looking raggedy it still helps.
Entertainment devices to keep you occupied in bed
If you’re well enough, a laptop, tablet or internet-connected phone makes a massive difference. I find a 10-inch tablet and my gaming computer set up next to my bed (with the monitor on the overbed table) works best for me, but that may not be the case for others.
I don’t have the fine motor control now to manage a phone and struggle with a smaller tablet but I know for others they’re often easier.
A laptop is easier than a desktop computer and you can get special stands to put them in the best position for using lying down, but they’re not as powerful as a desktop computer for heavy gaming.
I do know I’m lucky to be well enough to do gaming though. I use my tablet mostly for Twitter, reading blogs, ebooks and browsing websites. I also use it as a communication device when I’m nonverbal.
Drinking in bed if you have ME
The Hydrant is great for drinks in bed without having to worry too much about spilling and you can go for a bit longer between refills as they go up to one litre in size.
The ends need changing every couple of months of constant use or they do start leaking, but they’re pretty cheap (buy in bulk to save on postage) and easy to fit when they need replacing.
For hot drinks, I find a travel mug works best for me, with straws in the little hole for drinking. I also have an extra handle for when I’m strong enough to lift a cup to help keep it steady.
We have a range of drinking cups, water bottles and other eating aids on the Disability Horizons Shop.
Headphones to use in bed
The best headphones I’ve found so far are the SleepPhones. They’re headphones designed to be worn in bed and I find they’re much more comfortable than standard ones, especially when I’m lying on my side.
They are flat headphones in a fleece headband (looks a bit like a sweatband). It comes in different colours and sizes, including purple. The extra small size fits me but I do have an unusually small head.
They’re not the cheapest in the world but I think they’re worth the £31 I paid for them. There are other similar ones but I’ve not tested them as these ones work for me.
Making sure items are in reach from your bed
If possible, have as many things in reach as you can. The less you need to call for someone to get stuff, the better. When I was in a single bed, I had a small bookcase next to my bed that held quite a lot. Now I’m in a double bed and unless I’m having a very good day, I can only reach the stuff on the bed.
I can have quite a lot on here though, my heated penguins, my tablet, snacks, maybe a magazine, my cushions and pillows, computer mouse (on a large book for a flat surface), my scarves and often random other stuff.
If you can reach a bedside table, have what you need most frequently (or urgently) closest to you. I have a drawer in mine for storing snacks and another for medications, so when I’m well enough I can grab my own snacks/ This is great at 4am when I don’t want to wake Izzy if I can help it and means my medication isn’t always on show (though Izzy often forgets to put stuff back).
Warm and comfortable bed socks to wear in bed
Bed socks are amazing. I find my feet get cold even while the rest of me is sweating and overheating. Proper bed socks are warm, comfortable, and unlike normal socks, don’t dig in.
When they’re not enough, I have slippers that have microwaveable inserts that warm my feet up even when they’re most icy.
I also have a wheat bag I use near my feet when I’m not up to slippers and for when I go to sleep (I find my slippers feel wrong when I’m trying to sleep). I get mine from eBay.
Keeping warm in bed if you have ME
My microwaveable penguins are awesome. Not only do they keep me company at all times, but the heat also helps warm me up when my body temperature is all wonky and helps with pain. There have been many times when those penguins have kept me out of hospital.
You don’t necessarily need penguins, but some form of wheat bag is a great help (I find the animals keep the heat longer – maybe it’s the fleece?).
Keeping your bedroom looking nice and stimulating
Try and have the bedroom as pleasant as you can. I know some people need it as non-stimulating as possible, but if you can have nice pictures and things you like where you can see them. I have my bed placed so when I’m well enough I can look out the window and watch the birds.
At my old flat, I used to watch the sunset, but here there are buildings in the way that means I can’t see them, but that is a benefit as my light sensitivity is worse and means it’s darker in here.
Environmental controls can support your independence
You can get remote controlled lights and electric switches. They mean a lot to me, as any control over my environment helps.
My main light bulb is remote controlled (LED and colour changing, which I like a lot) and I have a different remote control for the sockets that my lamp and fairy lights are plugged into. That means I’m able to control my own light levels.
A fan helps a lot when it’s warm in summer. If it’s placed where you can’t quite reach it, you can have it plugged into one of the remote control sockets to be able to control it that way (though you won’t be able to change the speed, you could turn it on and off which is the important bit).
Read our article on 5 smart home gadgets to help you be independent.
Eye masks and earplugs for light and noise sensitivity
I have an eye mask that I don’t sleep without now. There are many different ones so hopefully, there will be one that works for you. It lives on my bed so I’ve always got it to hand.
I also have earplugs and ear defenders. My ear defenders aren’t comfortable when I’m on my side but work well against machine noises (lawnmowers, vacuum cleaners, washing machines) and are easy to put on.
Earplugs are harder to put in but block more noise and are more comfortable when lying on my side. Combining the two means when I’m really noise-sensitive I can get some peace.
This luxury blackout eyemask will help you sleep when you need to.
Preventing bedsores if you have ME
Don’t forget to move while you’re in bed! The biggest risk is bed sores, and you really don’t want them. If you’re able to move by yourself, do so as often as you can. I tend to wriggle around quite a lot while I’m awake.
When I’m asleep, the pain from being in one position wakes me up every 60-90 minutes, so unless I’m paralysed I roll over then. If you can’t roll over yourself, make sure someone changes your position every couple of hours.
I’m hoping for a better bed and mattress so I get less pain soon, but in the meantime the waking up and wriggling works. I’ve only had grade 1 bedsores when I’ve been paralysed when I’ve been unable to roll over or to let Izzy know.
Hobbies to help keep you occupied in bed
There are hobbies you can take part in while you’re in bed. My personal ones are currently reading, watching television shows on my computer and playing computer games. I’ve been doing pretty well recently with noise and light – it’s mostly movement and being upright that’s keeping me in bed, and a lack of hoist.
When I’m less well looking at pictures on my tablet or in magazines has been good. Communicating with people via Twitter on my tablet also helped keep me sane while I’ve been too ill for many visitors.
For those who have hands that work, there are loads of crafts – knitting seems strangely popular, and many different types of art can be done with an overbed table or a tray.
Check out our articles on 18 places around the world to ‘travel’ to while in lockdown, FREE online courses to up your skills and knowledge in 2021 and 5 crafts to keep you busy.
Mattress protectors to keep your bed clean
A waterproof mattress protector is essential. You will spill something at some point and the last thing you want to do is soak the mattress. If you can cope with the noise, a duvet protector and pillow protectors can also help.
I have spare pillows and duvets for when mine are wet, as the crinkly noise is too much. I’ve just ordered a spare U-shaped pillow as it’s now so essential to me, and while you can change bedding while you’re still in bed, changing or turning the mattress is pretty much impossible. My mattress protectors don’t make a sound and have a terry-towelling top.
Making sure you can contact someone if you need help
Have a way to contact whoever helps you. For me, I can use my tablet to message Izzy, or if necessary send her a text message or call her phone – it’s connected to my phone via Bluetooth. When I’m on my computer we go on Google Hangout using webcams so we can see each other even if we can’t be in the same room.
For absolute emergencies, I have a care call system where I have a button to press that will go through to a call centre that can get the police or an ambulance if I’ve fallen or I need help. I don’t have the strength a lot of the time to press the button which is a problem, but the idea is great.
We pay for it along with our rent I think. Some people find that wireless doorbells work when their carer is in another room.
Take a look at the Personal Alarm Watch to get help 24/7 when you need it.
Remaining positive to support your wellbeing if you have ME
Try to remain positive. Living in bed is not the end of the world. It may not be what you choose but it doesn’t have to be completely negative.
I find joy in many things while being in bed, and though I do want to get out and back into my wheelchair, it hasn’t been all bad. Bringing my computer in here so I could use it in bed was one of the best decisions we made.
By Danni Brennand
To read more of Danni’s blogs posts, visit their blog Dannilion. You can also follow them on Twitter and Facebook.
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