Activities you can do in bed

This post follows on from my Living with M.E. post where I touched on a number of different topics that I’ve found helpful over the years on things I’ve found to be helpful whilst living with M.E., especially severe M.E. and though I’m not bed bound but I do have to spend much of my day here in bed to best manage my symptoms so I thought I’d put together a post that I know a few people have wanted me to write on activities that can be done in bed.

Whilst I myself have M.E. I’ve written this post to apply to anyone with any illness who requires to spend time in bed and whether your bed bound or you just have to spend a couple of hours in bed each day I hope this post is of help to you in helping you find activities that you can do during the time that you are in bed.

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Some equipment I find helpful:

Some things I’ve found useful to allow me to do activities in bed is my over bed table*. A large portion of this table can tilt which is great for activities and helps with my posture too. My first over bed table* was provided to me by my Occupational Therapist (OT) so it might be helpful to speak with your OT to see if an over bed table can be provided to you.

Alternatively you can get fold out bed tables that can tilt up and you can adjust the height of. I have a bamboo one that I used before I got an over bed table. Another alternative that I still use in place of my table is my beanbag lap tray. These are two great alternatives and are a much cheaper option to an over bed table.

I also have a clip on rechargeable lamp as often I’m not always able to tolerate much light in my room so my lamp allows me to do activities at my table.

Finally is my Flexzi 3* stand that I’ve clipped onto the bed rail of my bed that I can mounts my iPad onto - this has been one of the best gadgets that I’ve ever bought. My Flexi I can also mount my phone onto if I wish and it comes with a part whereby I can clip my Flexzi stand onto a table as well.

An alternative which I also use and used before I got my Flexzi is a tablet beanbag, I have one of these and find them quite helpful.

I also find my noise cancelling headphones or my AirPods (or something similar) good especially to block out background noise as I find this reduces my fatigue as I’m not having to process so much sensory information.

I’ve left links to what I have but I’m sure you can find similar items that might be better for you or your budget. *Items eligible for VAT relief.

 

Note:

These activities will range in level of how energy consuming they are from very/low-level activities to higher level activities. I would colour code them from green, orange to red but I know everyone is different and have different ability levels and what might be a green low-level activity for one person might be an orange activity for someone else or they might be green for you on a good day but orange on a not so good day so I won’t do this and I’ll just list the activities.

Also with pacing more energy consuming activities you might want to limit and do for shorter periods especially if you have an energy limiting illness. This can help manage your symptoms and reduce pain, fatigue, post exertion malaise and other symptoms.

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I’ve put links to products and stores to help you out - if you live outside the UK I’m sure you have similar stores that will sell similar products. - All the products and stores (except supermarkets) I’ve left links to in this post sell online as I know that many of you will probably find it easier to shop online.

Craft activities

Activity books

There’s a wide variety of activity books out there so you’re bound to find something out there that will interest you. 

Here’s a YouTube video I did all about activity books if you’d find it easier to watch.

Some of the activity books out there include:

• Puzzle books: word search, sudoku, kriss kross, crossword etc.
• Sticker-by-numbers
• Journal type activity books
• Art activity books
• Colouring activity books
• Sketch art

You can by activity books from a wide number of places including: bookstores (such as WHSmith, Waterstones, bookshop.org and other bookstores including independent bookstores), Amazon, supermarkets, The Range, The Works

Card making kits

Card making kits are a great activity to do in bed as you get nearly everything you need to make your cards in the kit and then you can add whatever isn’t included like glue and scissors to do the activity. You can also pace yourself such as by only making one or two cards at a time. 

There are a lot of kits out there, check out the brands Violet Studio and Gorguss. Also check out the stores HobbyCraft, The Range and The Works.

Assembling die cuts

One activity that I do really enjoy doing in bed is assembling die cuts to make cards. What I do is on the Sunday I have my social hours with my PA Jo we sit and cut out die cuts on my die cutting machine so then I have die cut sets organised into envelopes ready to use for an in bed activity.

If you are able to spend time out of bed to prepare die cuts for this activity I’d recommend an electric die cutting machine as they’re much easier to use than manual ones. I have the Gemini Junior machine. It cuts up to an A5 piece of card so it’s not too big and it’s a just about lift-able weight.

If you aren’t able to get out of bed and you have a good size over bed table (like the one I have) and you either have a nearby socket or plug extension it would be possible to die cut in bed if you keep yourself tidy and organised with the die cuts you’re using, the paper you’re cutting and the scraps you’ve used, tools and other equipment etc. If you can find a way that works for you it’s an activity that I’d highly recommend.

I’d also recommend Sizzix thinlits die cuts and their card stock packs as well as this and this Violet Studio paper pads for die cutting.

Craft kits

There is a wide variety of craft kits out there and like with card making kits you more-or-less get everything you need and I’m sure you’ll find a kit to try out. There’s needle punch, mosaic coasters, macramé, cross stitch, embroidery, decoupage, diamond art, iris folding and so much more - all activities you can do in bed. Personally I love iris folding and diamond art kits to do in bed.

Places I’ve found kits are HobbyCraft, The Range, The Works, Amazon, Baker Ross, Etsy, Not On The Highstreet, The Craft Kit Company and Pretty in Paper by B (for iris folding kits).

Colouring

This is another great activity that you can easily do from your bed. There are lots of difficulty level colouring books out there. I really enjoy Joanna Basford’s publications. 

Not only are there colouring books out there you can get colour in stickers, postcards and notecards (which you can send to friends and pen pals) as well as other colour in activities such as colouring journals.

Scrapbooking

This isn’t something I do myself but it was an activity a friend suggested. You can keep a scrapbook on almost anything, in memory of a pet or loved one, received mail, special memories, a year in your life. You can make it as plain or as decorative as you wish. You can also buy scrapbook kits to get you started and then the rest is up to your imagination. Pinterest might be good places to go for scrapbook page layout ideas. - For more see ‘journalling’ below.

Crochet and knitting

This is another activity that can easily be done in bed. If you don’t know how to crochet or knit you can learn from YouTube or books - that’s how I learnt to crochet, or you could spend time with a family member or friend who can crochet or knit and get them to teach you.

You could buy a crochet or knitting kit that has everything you need and these kits vary depending on you ability from beginner to advanced or you could buy your own yarn and supplies and follow patterns. You can get patterns from pattern books: beginner patterns for crochet and for knitting, books, Pinterest, YouTube, free projects from HobbyCraft for crochet and knitting, crochet/knitting magazines, websites and blogs such as a crochet one I use called The Turtle Trunk for crochet.

Books, reading etc.

Books

Books I find are a great way to get lost in something. You can spend 5 minutes reading or you can spend an hour it’s entirely up to what you feel able to do. There are lots of book genres out there so I’m sure you’ll find something you enjoy.

I used to love reading but when I got ill I lost the ability to read but I’ve started to pick it back up again. Sometimes I can read a lot others times my reading ability slows down again which is why I love audiobooks as an alternative but I do love reading a book in my hands.

There are things that can help you with reading such as reading windows, reading rulers and coloured overlays to help reduce visual stress. Many smartphones now also come with a built in CCTV magnifier so using that to enlarge the text may help too. If you struggle to hold a book you might want to try a book holder to make it easier for you - the one on the link sits on a table but you can get ones with a clamp that you could attach to a bed side rail or grab rail.

You can buy books from a number of places, bookstores obviously and also Amazon. I personally like to get second hand good quality books as they are a lot cheaper; one place I order from is World Of Books.

e-books

These are a good alternative to traditional books. I like e-books as I find them to be more accessible than traditional books.

You can buy e-readers such as the Amazon Kindle, the Kobo Clara, the Lenovo and many other makes and models depending upon what you want out your e-reader such as Bluetooth, paper white screens, stylus pens, connection to the WiFi and audiobooks etc.

I personally just use the free Kindle app which I’ve downloaded onto my iPad so here I can have all the accessibility options and settings I need. I also get e-books with my subscription to Scribd.

I find e-books cheaper to purchase and some of them can sync with audiobooks I have on Audible. 

If you’re an avid reader on Kindle you can subscribe to Kindle Unlimited which gives you access to a wide range of e-books, audiobooks and some magazines too.

I find my Flexzi great for holding my iPad when I’m reading an e-book and if you have an e-reader you can attach the case via a Velcro patch to the Flexzi so you can mount your e-reader to the Flexzi stand. You can also buy remote controlled page turners for Kindle e-readers, iPads/tablets and iPhones making it easier to read in bed. I find using a remote saving me a lot of arm ache especially when I’m laid in bed reading.

The Happy Newspaper

The Happy Newspaper I find is a nice alternative and it’s a really easy low energy activity I find. It gives me the opportunity to be able to read but in a more accessible way. You can easily dip in and out of the newspaper reading just a couple of articles at a time if that’s all you can manage and as the name suggests it’s full of happy and positive news stories so it’s very positive and upbeat. I love the illustrations and design of the newspaper. It comes in compostable packaging and what I do with old newspapers is I cut out news stories and put them in pen pal letters and I also use the newspaper for my envelope art.

Magazines

I’m not really into magazines like I used to. I used to like Elle, Elle Decoration and Vogue. I also used to subscribe to Mollie Makes magazine which I liked as each magazine came with a free craft kit of some kind. I also get my membership magazines from the charities I’m a member of.

What I like about magazines is you can dip in and out of them. You can read an article here and then put it down to pick up later. They also tend to be filled with a variety of different kind of articles so there might be one aspect that might not particularly take your interest but there might be other features on other topics that do interest you. Articles also vary in length from small columns to two page spreads so you can just read what you feel able to do at that time.

There’s all sorts of magazines out there on a wide range of topics from lifestyle, interior design, fashion, crafts, various hobbies mindfulness and wellbeing to sports and more. The only downside is when buying a magazine you generally want to flick through it to see if it’s something you’ll like before you buy it; you can’t do this if you’re buying a magazine for the first time online if you’re unable to go shopping in person. My advice is if you’re unable to go and buy a magazine in person yourself if possible ask someone who knows you well to browse the magazine aisles for you to find some magazines that they think you might like and if you do enjoy that magazine then you can in future buy it again online. Alternatively you can now read online magazine such as on the Kindle app.

Some places to buy magazines from are supermarkets, local small shops, WHSmith, magazine.co.uk and Kindle Magazines.

Video/Audio content

Audiobooks

Audiobooks are pretty much a lifeline for me. I like listening to a book as I wind down for bed and when my energy levels are low I like to just lay in bed and listen to my current book.

If you have a ‘print disability’: 

A print disability may refer to someone with a visual impairment, cognitive impairment, specific learning disability, such as dyslexia, or physical disability. With a physical disability a print disability may mean that the person struggles to read a book, hold a book or turn a page for example. 

Having a print disability may make you eligible for free audiobook libraries or a subsidised subscriptions with some audiobook libraries.

Some of the audiobook libraries I’ve used and would recommend are:

• RNIB Library (free) - audiobook app or audio CD’s can be sent to you; as many books as you want each month. 
• Listening Books (subscription or you can have the fee waived) - audiobook app; as many books as you want each month.
• Everand aka Scribd (subscription) - audiobook and e-book app; as many books as you want each month. 
• Audible (subscription) - audiobook app, can sync with some kindle books, one credit = 1 book a month; more credits can be purchased, offers available both on signing up to the library and also on books such as 2 books for 1 credit or £1.99 books, there is also the plus catalog with unlimited books available.
• Your local library (free) - many now have an online audiobook library or may have a home library service where volunteers can bring audiobook CD’s out to you.

BBC Sounds

This is an app but you can also access it online too. On there you can listen to live BBC radio stations, past radio shows, check out the radio schedules, listen to music and BBC podcasts.

There’s lots to chose from each radio station and their shows are quite different, some have chat shows, some play a variety of music genres depending on the station, some discuss current affairs, some commentate live sports and more.

The music you can select from a range of playlists of different music genres.

There is a wide of podcasts (most of the podcasts I listen to are BBC podcasts) and they also come in a wide variety of genres and cover a wide variety of interests and you can listen to BBC podcasts on other platforms like Apple Podcasts too.

Podcasts

I really enjoy listening to podcasts and I listen to a wide variety of genres of podcasts from true crime to talk shows through to documentary podcasts.

I listen to a lot of BBC podcasts that are available on BBC Sounds but I get them through Apple Podcasts. You can also get podcasts on other platforms like Spotify or Google Podcasts.

There are a lot of home grown podcasts out there too that people do for enjoyment or as a hobby or because they want to give a platform to others to give their guests a voice on their show a voice. 

Some podcasts are in an interview style, some are chatty, some are more informative and information giving, whilst others are dramatised. There’s so so much out there you’re bound to find something that interests you and in a style you like too.

Radio

I quite enjoy listening to the radio sometimes depending on the station and what show is on. Personally I like BBC Radio and I listen to it through the BBC Sounds app but there are a lot of other commercial stations out there too that you can listen to either through apps, the web or on a DAB radio.

Sometimes I like putting on stations that play music other times I just like the talk shows where they just discuss current affairs and have guest speakers on the show. I find the talking on the radio gives me a bit of company.

Music

This can be something enjoyable to do that won’t require too much energy. You can get music on places like Apple Music, Amazon Music, BBC Sounds or Spotify. - Some of these you can access the music for free others you have to subscribe to and/or you may get ads in between songs.

TV programs and films

Watching TV programs and films is another activity you can do in bed. I love getting into a good box set or having a cosy film night.

You can watch either on a television in your bedroom or on a tablet or laptop. For me this is where my Flexzi 3 iPad/tablet mount comes in super handy especially when I’m reclined or laid in bed.

You can either watch live TV or catch-up streaming TV such as on BBC iPlayer, ITV Hub, All 4 etc, or on subscription services such as Netflix, Amazon Prime Video, Disney+ and more. If you don’t have a smart TV you can buy a Roku to access streaming channels on your television. (Also if you’re in the UK make sure your household has a TV license.)

YouTube 

I quite enjoy YouTube and I like the variety of what’s on there; there’s literally something for everyone. I also like that you can find videos that vary in length from 5 minute videos through to 1 hour documentaries. Some TV channels also share their programs or clips of their programs on YouTube. Then you also get more home grown YouTube channels.

Gaming

Handheld Gaming

The first hand held gaming consoles that come to mind is the Nintendo Switch (there’s different versions of these like the Switch Lite) but there are others out there. You can just buy handheld games consoles that play just one game like Tetris or tamagotchi. I don’t have a handheld gaming console myself as it’s not something I think I’d be really into but it’s an easy activity to do in bed and there is a wide choice of devices and games to choose from out there. - I do however miss my Nintendo DS Lite though that I used to own and I wish that I still had that as I enjoyed my DS and the games I had for it.

If you have a television in your bedroom you might also want to play games on things like an Xbox or Play Station.

Tablet/mobile games

I enjoy playing games on my iPad and iPhone. I like to play a variety of games some of my favourite things to play are card games, Angry Birds, 1010, Scrabble, Two Dots, The Sims, design games and more. 

I find it easier personally to play on my iPad as the screen is bigger. I can also also dim the screen and reduce the white point to help with my light sensitivity.

Digital colouring 

If you’re not a big fan of traditional colouring or if it’s something that you find difficult to do you might want to try out colouring game apps instead. There’s lots to choose from from drawing apps, to picture colouring. Some apps are free and others you subscribe to. You can find them on your App Store on you phone or tablet.

Games

I am a big fan of games and many can be played whilst you’re in bed; they’re also a great way to spend time with others and ease some of that isolation you may feel. - This is where an over bed table comes in helpful. 

There are so many games out there, more than I can list. There are different board games; some of my favourite games are Bananagrams, Quirkle, Carcassonne, Rummikub, and Splendor. Some of these games we have to get the travel version of so they fit on my over bed table but me and my family manage to play many different games on an over bed table even my smaller table before I got my bigger over bed table.

Beauty

Nails

I always feel brighter when I’ve done my nails. (I own more bottles of polish than I dare count!) You can buy nail polish bottle holders if you’re worried about knocking over a bottle of polish; I also use an old flannel to put under my hand for any accidental mistakes.

I love doing nail art too from simple nail art animals, using nail foil, stickers, tape or water transfer stickers there’s so much you can learn to do. (Pinterest is a great place for inspiration and tutorials.)

If doing your own nails isn’t something that is possible for you to do you could ask a family member, friend or caregiver to do your nails for you. Alternatively some nail techniques work in the community and can come to you and I’m sure they can find a suitable set up to from your bed. To find mobile nail technicians just search for ones in your area on places like Google or social media such as Facebook or ask someone to ask around for you.

Hair

Another thing I love sitting in bed and doing is styling my hair. Feeling pretty, even when I’m going nowhere nor really seeing anyone makes me feel better and boosts my wellbeing. (I touched upon this in my Living with Severe M.E. post.)

I like doing different styles and watching YouTube video tutorials and learning how to do new styles. I’ve found videos on low-energy hair styles to more complex styles that I still haven’t quite mastered yet. But it’s another activity you can do in bed and something new to learn as well plus making you feel a bit glam at the same time.

Massage

Like nail technicians you can get mobile beauty therapists; you can find specialist beauty therapists who specialise and have training in treating people with chronic health problems. The latter might have more understanding in your needs from massage therapy and how best to treat you.

I see a lady called Hollie and she works in the community and brings a whole set up with her when she comes and Hollie will tailor everything to you. She’ll massage you wherever you feel comfortable so some people she treats in their wheelchair or in a chair but for me I lay in my bed.

To find medically trained massage therapists try looking at the Amethyst Trust 

Rest

Rest means different things to different people. For some it’s not doing nothing and allowing the mind and body to stop for a while, for others this doesn’t work for them and they find they prefer to do a restful activity. Here’s a blog post on rest that I wrote if you want to read more.

Mindfulness meditation 

I find taking time in the day to rest is really important for pacing especially as I have an energy limiting illness so I always try to schedule in at least one rest period in my day especially after a high level activity.

There’s lots of different meditations out there from body scanning, to breathing exercises, visualisation and more. I really like the Calm app but there’s others out there, my advice is to go on your app store download a few and try them out before committing to a paid subscription. You can also get some free mindfulness meditations on YouTube but some do have adds in the middle of them so it’s a bit hit-and-miss. I really like the colour meditation that I found on YouTube that I find very restful.

Soundscapes

Soundscapes are a different to doing a mindfulness meditation. I find listening to soundscapes gives my mind and body the opportunity to just stop for a while so I’m not constantly on the go physically, mentally or cognitively. Sometimes I listen to a soundscape for just 10 minutes sometimes it’s an hour, especially if I’m feeling burnt out and crashed.

Some soundscapes are just repetitive sounds like waves crashing on a beach or rain falling on leaves. I prefer constructed soundscapes (I’m not sure if that’s the proper name for them but I’ll go with that). These are soundscapes that almost take you to a place and take you on a journey, like for example my favourite Central Park soundscape it takes me through a whole sequence of sound effects to make up a narrative to make me feel as though I’m really there. I here dogs barking, people taking as they walk past, passing vehicles, sirens, an overhead plane, the chime of a clock tower bell, a vendor cart being pushed, a  bicycle, children playing and more. I also like the constructed Costa Rican jungle soundscape. Both of these I get on the Calm app but I’m sure you can find them elsewhere on other relaxation apps or on YouTube.

I used to use the Better Sleep app and on there as well as there being a bank of meditations and sleep stories you can also construct your own soundscapes including ASMR sounds.

Other activities 

Pen Palling

Writing letters to friends and pen pals is something that I love doing and it’s something that I’ve done for many years now. I’m definitely a believer than hand written mail is much nicer than a digital message; it’s much more personal I feel too.

You don’t have to have lots of supplies to get you started with pen palling, just a writing set or some note cards or some hand made cards, pens, maybe some stickers and/or washi tape and of course stamps. You can also send postcards too as an alternative.

There isn’t a set amount to how much you write, some of my received/sent letters are a few pages long others are just a little postcard. What I love is that between me and my pen pals we all understand that what we’ve written, however little or much is what we’ve been able to do at that time, especially for shorter replies. Often with my longer-ish letters they do take me days to write (or type) and I just add a little here and there until my reply is finished.

Like I just said above instead of hand writing your letters if it’s easier for you you could type your letters. When I type my letters I jazz them up on my computer with coloured font and I add in pretty illustrations like flowers, koalas or rainbows.

Here’s a blog post I read on how to start pen palling.

If you struggle to write or type but would like to send mail to a friend you could ask a family member, friend or caregiver to write down on your behalf what you want to say. I know a friend of mine does this and it still enables her to send mail to friends when she is able to and it means a lot to me to hear from her.

Warrior Card Swap with the CWC

An alternative to pen palling if you just want to send occasional mail could be joining in the with Warrior Card Swap run by the Chronic Warrior Collective.

This is just a monthly card swap that you can opt to join in or out of each month (in case you’re having a bad time). You can opt to write to someone within your own country or internationally; in return you’ll receive mail from someone else. Don’t panic, if you opt in and get stuck and find that you can’t send mail to your swap you can click for help and the Yikes Team will step in for you.

You can also opt to receive faith based cards if you wish. You have a little bio which your match sees so they’ll know a bit about you. You can also opt to say that you’d be interested in making friends and pen pals with your swap if you wish. I’ve made some lovely friends and pen pals through the swap and I find the CWC organisation very supportive if I need and help, support or advice.

Blogging

This activity may or may not interest you but I thought I’d include it as I find for me it’s something I can easily do from my bed.

There are different blogging platforms; I personally prefer to use Blogger but there’s also also WordPress, SquareSpace and Wix to name a few. Different people get on with different sites and it depends on what layout design you want your blog to look like and the features available and the ease of creating content for your blog as well as adding external elements to your blog such as pop ups etc. I did try WordPress myself for a short while but I personally couldn’t get on with it so I switched back over to Blogger. You can also either get a free web domain or you can purchase a website domain like I have for this blog.

What I like about blogging is I can work at my own pace. I can type here and there for however long I can manage at that time and I can pace myself with getting blog posts written. Then with special events like Awareness Events if I plan ahead I can try to get a post pre-written and ready to auto publish for that event like I’m going to do for next month (May is a busy month as it’s both EDS and M.E. Awareness Month!)

So starting a blog might be something you want to consider if you’re looking for a new project or hobby. You could have a particular focus such as sharing short stories or poems that you enjoy writing, or you could give it a focus on a special interest of yours such as book reviews or like me you could just write about anything and everything that interests you.

Even if you just write one post a month that’s still something and it’s more a project and activity for yourself to work on.

If you don’t want to blog yourself there are plenty of bloggers out there who all blog about different things so I’m sure you can find some different blogs that might take your interest to read them.

Journaling 

There are lots of different types of journaling: bullet journaling, art journaling, photo journaling, scrapbooking journals, planners, junk jornals etc. 

I’ve kept a photo journal in the past; I have a Sprocket photo printer that prints photos off my phone and I can edit the photos, add text, stickers, borders etc. and the photo is a sticker so it’s perfect for photo journaling. 

I also have a bullet journal, I’ve had a few of these over the years. My current one I just journal different things on like my fundraising, I keep a log of the books I’ve read and rate the out of 5 and have a pixel a day migraine log, blog and YouTube video ideas, so rather random but quite helpful. I like the visual nature of it; it’s like my brain in a journal and I’m a creative person as it is so I think having a bullet journal suites me. I’m also trying to use it more to steamline my life.

You can buy bullet journals in all sorts of sizes and designs. I love the illustrated Roger La Borde journals which I used for my photo journaling. You can also buy starter kits such as these I’ve found for you:

• Scrapbooking kit on Etsy
  
• Scrapbook kit
  
• Faber-Castell bullet journal starter kit
  
• Bullet journal starter kit
  
• Carpe Diem planner collection
  
• Junk journal kit
  
• I’d also recommend the Zebra Mildliner pen or their journaling pen sets like this one

Pinterest

Pinterest is an app, you can also log onto it on the website too. I really enjoy spending time on Pinterest looking for ideas on different things and pinning ideas to my different (and very organised) boards. I get ideas for my bullet journal, nail art, my home, makeup, crafting, organisation, my Cricut machine, pen palling, hex codes for colour pallets and more. When I was getting ready to move home I designed my new home all on Pinterest and got lots of fab furniture ideas such as my craft desk IKEA furniture combo. I can spend a long time on Pinterest and I find I get lost in it and I find it a great activity and a fab way to get inspired.

Crash

Crashing is what people in the M.E. community refer to when they experience a flare up of symptoms, usually quite significantly.

This is what a crash can look like: You become more hypersensitive to sound, light, touch, smells, even small amounts of sensory stimulation can be difficult even physically painful. Pain levels increase and energy levels decrease even more than usual. Muscles weaken, ache and spasm, you struggle to tolerate being sat up so you have to lay in bed, your immune system goes down and you experience cold and flu-like symptoms.

A crash can last a day, a few days, a week or two, or even months. Crashes are usually brought on by over exertion or an illness or such thing. Sometimes especially for those with severe M.E. even a small amount of ‘overdoing it’ can trigger a crash.

Living with M.E. is like walking on eggshells as I don’t know what will trigger a crash or when I will crash and when I do crash I don’t know how long I’ll crash for or how severe the crash will be. Sometimes I can predict a crash such as when I had my last surgery, when I was in the process of moving, when I leave the house, but I still don’t know the severity or length of my crash. Sometimes even just having a tidy up in my home and over exerting myself that way will lead to a minor crash lasting a day or two. Leaving the house definitely leads to a crash.

Sometimes I crash immediately afterwards like if I’ve overdone it on an activity and then I’ll spend the rest of the day and the next in bed with zero energy, in pain etc. Other times the crash can have a delayed onset, like it won’t hit me until the following day.

For me crashes are the hardest aspect of living with M.E. and they’re difficult for so many different reasons. The first few I’ve already mentioned: the heightening of my symptoms, the unpredictability in lots of ways. Also the emotions, like upset of the amount of pain and fatigue I’m in. FOMO: the Feeling Of Missing Out, frustration and regret wishing I hadn’t done what caused my crash but also frustration at my M.E. plus the isolation as well as grief. Then also there is the challenge of needing more support from my care team (PAs and carers) as I’m not able to do as much myself so there’s more reliance on their support taking away my independence and dignity. Finally with long term crashes there is always that worry and questioning ‘is this my new normal now?’ when the crash is no longer a crash but how things are for me from now on.

Living with Severe M.E.

It can be really difficult living with severe M.E., I spend so much time here in my bed, in my bedroom. I’ve found it important over the years to make my bedroom a lovely space to be in. Here are some of my tips I’ve found that have helped me cope with having M.E. in different ways. From making my bedroom a lovely space to just general ways of coping day-to-day - some things I plan to go into more detail in future blog posts  

Bring the outside world in

Whenever my family go on holiday they collect a selection of postcards for me. This allows me to experience different places around the UK and the world. I also love it when they send photos of places they’re visiting. 

Personalise your bed 

I find having my favourite bedding and washing it in my favourite laundry projects such a lovely thing. Having my favourite bedding gives my bedroom a touch of my personality and accessorising it with things like blankets just makes my bed a lovely place to spend time in. I also have my comfy body pillow - maybe you could add some cushions too. I also find having normal bedding on my profiling bed and medical mattress makes my bed look less clinical.

Use your imagination

Imagination can be such a powerful thing. On my worst days or when I have a migraine or I can’t tolerate any light or sound I turn to my imagination. I’ve been all around the world: to Central Park, the Blue Mountains in Australia, to the Costa Rican rainforest and to my own private beach in the Maldives.

If I can tolerate it I listen to soundscapes and let them aid my imagination to take me to different places.

I find my imagination relaxes me as well as distracting me from the increase of my symptoms that I get on my bad days.

Lighting

Lighting is a great way to create a lovely space in your bedroom. I love fairy lights and my sensory lighting. I have a Mathmos Space Projector as well as a mushroom lamp that offers different light modes such as a choice of colour, brightness and a colour changing mode; this lamp comes with a handy remote.

Smart lighting I find is really helpful on a practical level too as I can control my bedside lamp from my phone or with my voice. I can set it to different levels of brightness as well as the tone of the light colour.

Get green fingered

If you’re able to, in terms of letting light into your room and also able to look after plants having plants in your room can be another way of bringing a bit of the outside into your room. Plants like succulents and peace lilies and oxalis’ are very easy to look after.

Dealing with medical supplies in your bedroom 

Sometimes it can be hard to get the balance right when you have medical equipment and supplies in your bedroom. You don’t want your bedroom looking too clinical whilst at the same time having what you need and having supplies at hand and having the equipment you need to aid your independence and health.

For me I have a profiling bed and air mattress; I find having nice bedding on it makes it look a little less clinical and at the foot of the bed where the mattress motor is I’ve put a little bunting. I also have a Flexzi iPad stand and I chose pink so it adds a pop of colour. My over bed table doesn’t look out of place. I’ve seen people decorate their IV poles and I've also seen medical supplies cupboards with coloured accents or I’ve seen people use the three tier trollies for supplies. For me I keep what supplies I need at hand in one of my bedside drawers and in a box under my bed then the remaining supplies I’ve organised hidden away into draws in my wardrobe and in a large cupboard in my bathroom.

Sometimes though it’s inevitable that medical equipment from beds, IV poles, mobility aids, hoists and supplies having to be out for ease of access or simply because they can’t be moved out the way as they’re needed frequently or they fixed in place.

Aids, equipment & gadgets

It can be really helpful to get some gadgets in your room to make life a bit easier and to give you a bit more independence. 

One of my favourite gadgets is my Flexzi iPad holder it’s amazing for positioning my iPad whilst I’m reclined or laid in bed and I have to spend a lot of time like this in bed. 

Another really helpful item is my over bed tabled, part of the table tilts so it’s great for being able to do activities in bed. I’ve also clipped a rechargeable light onto my table too. An alternative is a a bed table; I have a lovely bamboo one that also has a portion that tilts or another option is just a simple lap tray, personally I prefer the ones that curve around you.

I also find my Dyson fan great for my room. I have the hot+cool fan so it’s perfect for all year round. I can control it from my phone or with voice commands or alternatively with the remote. Even though I live on my own it can be helpful to use the heater on my Dyson as it means I don’t have to get up to turn the thermostat up if I’m not able too. For me I struggle with dysautonomia so I find it hard to stay cool or warm up so it’s important to have my room cool/warm to manage my symptoms.

Audiobooks have been a lifeline for me

On my bad days or when I’m fatigued there’s little I can do. Audiobooks have become a lifeline for me and they help keep me occupied. They also aid my imagination and I love listening to a wide variety of genres.

If because of your disability you have a ‘print disability’ which includes those with physical disabilities who struggle to read books as a result such as holding the book or being able to cognitively concentrate or read print etc then you may be eligible for some of the free audiobook libraries such as RNIB and Listening Books - many local libraries now also have e-libraries with access to free audiobooks. I recently joined my local library on the recommendation by my best friend and I was able to join over the phone.

Activities 

Spending so much time in my bedroom and in my bed I’ve found it important to find ways to do activities I enjoy. These have mainly been low-level activities as it’s mostly what I can tolerate but I’ve found ways to be able to do more energy consuming activities too.

Some ways I’ve found the ability to do activities is from using my Flexzi iPad stand which I can mount my iPhone onto as well. My table which I mentioned above has also really enabled me to do activities whilst in bed too though sometimes I use my lap tray.

There are many activities that can easily be done from your bed: different crafts, activity books, reading, listening to audiobooks/podcasts/music/radio, watching television programs, gaming, writing, journaling, blogging, filming for social media - the list goes on and I will do a dedicated blog post on this topic at some point soon.

Feeling pretty

Sometimes when I’m feeling up to it putting on a bit of makeup can make me feel much brighter. I also like to dress up nicely too some days even though I’m not going anywhere or seeing anyone other than PAs/carers. Another thing I do is styling my hair or if there’s some free time getting my PA to curl my hair for me. I also like to spend time on my nails too, painting them and doing nail art.

Friendships

For me my friends remind me I’m not alone and that I’m not forgotten. My friends are people I can talk to about anything, good or bad. If either of us are having a difficult time or just to chat about our day, what books we’re listening to, to motivate one another, to have someone to confide in. Just simply being a friend. Oh and to exchange funny animal videos with - that friend if you’re reading this you know who you are!

Friendships are really important because of the isolation we live in. I don’t have any friends locally and for some people meeting with friends in person can only be brief or not possible due to the limits of their M.E. Technology really helps. I chat to my friends on WhatsApp, sometimes it’s typed messages with other friends we send voice messages; it’s whatever is easier for us to do but it keeps us connected. I also like to write to my friends too the old fashioned way through the mail.

Pen pals

Pen palling is something that really helps me. For me it gives me a connection to the outside world and to other people. I love reading about my pen pals and friends life’s and what they’ve been up to and writing back to them; it takes my mind off what I’m going through physically as I’m replying writing about what I’ve been up to such as what books I’m currently reading/listening to or discussing something with a pen pal such as the antics their pets get up to or their work or college course. I also feel like I’m talking to a friend when I write my mail replies too.

I also join in the Warrior Card Swap which is a monthly scheme where you send mail to someone and you receive mail back from someone else. I really enjoy this and if I’m ever having a bad month I can always opt out. Through this card swap I’ve made friends and found new pen pals.

I love displaying my mail on my notice board too. On there I put the cards, postcards and other bits I’m sent. Looking at my notice board reminds me of the kindness of the person writing to me and the quotes on there have a personal meaning to me. Again like my friends my notice board reminds me I’m not alone and that people are thinking of me.

6 tips for living with limited energy

Living with an energy limiting illness can be difficult in many different ways. Each person’s experience is different and you may experience additional symptoms. Also for some people they have more cognitive energy than physical energy or whilst others experience their energy levels the other way around. As well everyone experiences a varying severity in the limit in their energy levels, so these are just some general tips that I’ve found to be helpful that I want to share with you.

1. Learn to pace out your day

Pacing and activity management are going to be your best friend. The best way to visualise it is high level energy activities medium level activities and low level activities as well as rest. I find this traffic light system great as it’s visual but also it’s flexible as what can one day be a medium level activity on a different day can become a high level activity if your energy levels are more depleted.

I use this colour code system on a day planner, or on my to-do list or I use the traffic light pacing list pad* to plan my day. 

The key to pacing and with it being so visual I can see that if there’s a red task I’ve just done I know to follow it with either a green task or a rest period therefore I’m pacing myself and I’m not going to overdo it with my limited energy. I also know to limit the time I spend on a red task and when to do it in the day. If I do an orange task I know to follow it with a green task and then to rest and so on.

*from Stickman Communications © - they have some great pacing resources in their shop including a very user friendly little book all about pacing. I got this magnetic planner set from there too.

2. Do your most energy consuming activity at the time of day when you have the most energy 

Work out when in the day you have optimal energy. This is different for everyone for me it’s early afternoon but for others it’s in an evening. Use this time when you have the most energy to do your most energy consuming activity or activities for that day but try to limit it to only one or two activities so you don’t over spend your limited energy.

3. If you’re getting tired STOP and rest

This is something I’m always not the best at doing and I’m always trying to tell myself not to do anything if I’m feeling tired. It’s easier said than done!

If you’re noticing that you’re starting to feel fatigued either don’t start to do any activity and just rest instead or if you’re in the middle of an activity and you’re starting to tire just neatly pack up (you can pack away properly another time) and just leave to go rest. You’ll perform better when you’re not feeling absolutely exhausted and if you do any activity whilst feeling utterly fatigued you’ll only make yourself feel worse.

When you rest either do a really low-level activity or what I do when I need to just stop and rest is lay in bed and listen to a soundscape. 

4. Time your activities 

When doing a high or medium level activity work out your activity limit. This is different for everyone and may vary depending on what kind of a day you’re having. For me my activity limit is 20-30 minutes usually depending on the activity.

Once you know your activity limit which will be trial and error I find it helpful to set a timer for 20 or 30 minutes to ensure I don’t overdo it and over exert myself which might impact on my fatigue levels crashing. 

Another thing that I was told to do was on my to-do list put how long each task is going to task me to do, such as: put laundry on - 5 minutes, write to pen pal (my main activity for the day) - 30 minutes, call pharmacy - 10 minutes. By putting times on my to-do list it ensures I can fit in rest periods during the day as well as factoring the time it takes me to switch from doing the laundry to calling the pharmacy.

5. Use aids, equipment and gadgets etc.

Using aids, equipment or gadgets can help share the task and help reduce fatigue or help you keep going for longer and allow you to do more.

There is so so so much out there depending on your, your medical condition and your needs. From gadgets and pieces of equipment to use around your home through to mobility aids. A few examples could be using a shower stool to reduce fatigue when showering, I have many kitchen gadgets that help me save energy like my hands free tin opener, also different mobility aids from walking sticks to rollators to wheelchairs can help reduce fatigue - if you’re unsure about mobility aids speak with an Occupational Therapist or physiotherapist for advice on what is best for you.

6. Don’t be afraid to ask for help

Asking for help isn’t a sign of weakness, it’s actually a sign of strength. This could be asking for help from a family member, friend or even a professional.

It could be asking someone to help you change the sheets on your bedding to reduce your fatigue, or asking for someone to make your lunch for you, or a family member to wash your hair or to employ or ask social services for help and have a PA/carer to help you out. Other things could be to get a cleaner or dog walker or even if you have children give them school meals to save your energy on making packed lunches.

‘I love your wheels’ - International Wheelchair Day

When I go out I aways smile when I hear ‘I love your wheels’. 

In the UK there are 1.2 million wheelchair users and around 1 in 3 of them like me are ambulatory wheelchair users. Being an ambulatory wheelchair user means that I can walk/stand without the use of a wheelchair; in place of my chair I use crutches, but I still need the aid of a wheelchair in certain situations such as when I leave the house as my walking ability is limited; as well my mobility ability can fluctuate. Alongside this I’m much safer in my wheelchair and sitting in my chair it reduces my pain and fatigue levels and allows me to do more than what I can manage to do on two legs.

I feel proud to be a wheelchair user; what has helped me accept my wheelchair over the years is accessorising it so my chair represents ‘me’ hence why I love it when people comment on how I’ve accessorised my wheelchair as I feel that in that comment they see me and not my chair. Some accessories are purely decorative like my Izzy Wheels spoke covers others are ‘pretty and practical’ like my push rim covers, my FFORA bags and cup holder and other bags I have on my chair plus my Bundle Bean wheelchair cosy and also my new Flexzi phone holder. (Yes there’s a lot that I’ve added to my chair I know!) Here is a video on how I’ve accessorised my wheelchair.

Advice I’d give

To those who haven’t yet started to use a wheelchair 

If you’re struggling with your mobility and you think a wheelchair might help you speak with your GP, consultant, Occupational Therapist or Physiotherapist. This is what I did, I asked my neurologist if he thought a wheelchair would be helpful to me and he thought one would so he referred me to Wheelchair Services and I was provided with a manual self-propelled wheelchair. 

I’m grateful that I have a wheelchair on the NHS; it does the job though I would someday like to get an ‘active’ wheelchair that is more lightweight with the customisations that would better meet my needs as well as having an electric add-on for my chair but these can all come at a high cost which I can’t justify just yet and my current wheelchair is just about doing the job.

Getting a wheelchair

My advice is to try the NHS Wheelchair Services first; you may get a wheelchair through them. Alternative you may be eligible for a voucher to put towards purchasing your own wheelchair instead of having an NHS provided wheelchair.

If this option isn’t available to you think about your budget and whether you want a manual or electric wheelchair or even a mobility scooter. There are lots of options out there, read and watch different reviews on different chairs and look at different wheelchair users on social media to see what chair they use to narrow down your choices. Contact different mobility dealers and try out different chairs to see which one you like the best take them apart to get the feel of how easy they are to assemble and resemble and feel the weight of the chair too including the battery if it’s an electric wheelchair. If you’re thinking of a manual chair look at all the customisation options (including prices) and what custom options you might need like a high backed seat or height adjustable handles if you need someone to push you. Think about the weight of the chair; how are you going to transport it? such as how it comes apart to put it into the boot or will you get a Wheelchair Accessible Vehicle? Think about how often you will be using the wheelchair, will you be just using it outdoors occasionally or all the time or indoors too? Think about how you will get on and off the chair. With a manual wheelchair think about what seat cushion you’ll need to get. Will you get an electric add-on for your manual wheelchair. Consider the battery life on electric wheelchairs and how far you can travel on it. These are just a few of many things to consider so do your research.

Adapting to first using a wheelchair 

Like I mentioned above accessorising and personalising my wheelchair has helped me make my wheelchair more ‘me’. I didn’t immediately do this overnight the adaptations have just come over time but it is something I’d recommend doing if you’d like to and your wheelchair allows you to personalise it.

There are definitely some helpful things to have. I’d say my FFORA bags and cup holder are really handy to have, plus my push rim covers (I learnt to pop my first wheelie the other day because of them!) and also my Bundle Bean.

It can be daunting when you first start to use a wheelchair especially out in public, there’s lots of things to get used to such as wheelchair accessibility and navigating around in your chair as well as maybe the public’s attention on a wheelchair user. Thankfully I’ve never had any negative experiences especially as an ambulatory wheelchair user.

If you’re self-propelling your chair one thing to get right is the rhythm of pushing your chair so you don’t tire your arms out. This is a fab video from Gem at WheelsNoHeels on her YouTube channel showing how to correctly propel and push yourself in a wheelchair as well as how to pop a little wheelie. Gem has lots of helpful videos like this on her channel so I’d definitely recommend checking her out.

My advice is when you first start to go out in your wheelchair I’d take someone along with, just for support or to take over pushing your chair if you get tired, to help you get it in/out the car or to negotiate public transport, or for those ‘just in case emergencies’ like your electric wheelchair battery running out of juice.

Another thing to consider is parking. If you’re eligible it will be worth applying for a disabled parking badge. This will make going out in your wheelchair much easier as you’ll be closer to where you need to be and you’ll have the additional space to get you’re wheelchair out the car and also to get in/out your wheelchair.

Some of my recommended accessories

• FFORA - an attachment system for manual wheelchairs which you can attach a FFORA bag or cup holder onto, there are a variety of bags to choose from the attachment system comes in different colours as does the cup holder. Here is a blog post review on my FFORA products I also have this review video and this video showing you this interior of each of FFORA’s bag designs. The bags also come with cross body straps so great if your cup holder is in use or you just want to wear your bag as an ordinary cross body bag
  
• Izzy Wheels - spoke covers for manual self-propelled wheelchairs 
  
• Bundle Bean - Wheelchair range - wheelchair cosies, organisers, spoke covers, ponchos etc. in a wide variety of designs 
  
• Push rim covers - these are the ones I have and would recommend and they come in different colours 
  
• MERU Flexzi phone mount - this is just a gadget I use when needed, it comes in different colour options, depending on your needs it might be something that is helpful to you
  
• Pickepacke bags - I like my Pickepacke bag as it’s behind my legs so the contents are easy to reach plus they’re more secure than having them on the back of my chair 
  
• Mobility clips - these can convert your handbag to allow you to hang it on the back of your chair 

Product review: MERU Flexzi 3

I recently bought the MERU Flexzi 3 which is a stand for my iPad (or it can be used for other devices) I’d been thinking about getting it for a while, especially after buying the Flexzi 1 stand which I attach to the frame of my wheelchair to mount my iPhone onto. The Flexzi 3 holds weightier items such as iPads.

Like most disability gadgets it wasn’t cheap (I did get VAT relief on it so that helped a little and postage was included) but I can say that it’s one of the best gadgets I’ve ever bought.

It comes in either black, green or pink and you can buy an extension kit to lengthen the gooseneck. It can be moved around quite easily in endless positions and with this product it comes with a part that can mean it can be clamped to a table as well as to a bar. Other options can be purchased from MERU such as iPad cases, additional Velcro patches and press buttons - depending on a person’s need. Personally I just bought online a clear iPad case to put my iPad into to attach it to the Flexzi 3. 

As well as using it to mount an iPad other devices could also be attached to the Velcro pad if you purchase extra patches. You could attach e-readers, mobile phones, or you could buy the camera mount too as another use of the Flexzi 3.

As you can see from the photo I just clamp it to the grab rail on the side of my bed. It’s designed well as sometimes I struggle with my hand function but I feel in the design process they considered the hand grip for tightening the clamp to be accessible to those with limited hand function.

The main reason I bought this was because I spend a lot of time in bed, especially reclined so I can manage my M.E. and symptoms like orthostatic intolerance, tachycardia and low blood pressure. It’s difficult to use an iPad or any device when you’re reclined or laid flat in bed. For so long I awkwardly tried to use my iPad in bed either trying to watch programs, videos, putting on an audiobook or podcast, typing emails or lists or blogging etc. Now I can put my iPad into the case mounted on the Flexzi stand and I can easily position it however I like depending on how I’m laid in bed and it’s just effortless. I can use my iPad as normal and it’s just made life so so so much more easy for me. Then when I don’t need my iPad on the stand I can take it out the case and put it in the case that doesn’t have the Velcro patch and use my iPad as normal, not on the stand such as if I want to take it to another room. I could even put a Velcro patch on a phone case and mount my phone onto this stand too. It’s totally revolutionised using my iPad from my bed.

The Flexzi 3 also has a part that can be taken off and slotted into the clamp to allow it to be attached to surfaces such as a tables, desk or tray.

Table clamp

As amazing as this product is and I’d still buy it I’d say the main downsides and possible barriers for some people being able to purchase this assistive device is the cost of the product even with VAT relief. For me it cost £80 which is a big chunk out of my PIP budget and I did have to save for it. Also the clamp is very big; I tried to clamp it on the other side so I wasn’t knocking myself on it but it really limited the movement range of the pink goosenecks so I would probably have to have bought the extensions so for not I’ve just put a small pillow to prevent unwanted knocks and injuries.

Despite the downsides I’d definitely say that the benefits that this product has brought me totally are worth it and it’s a product that I wish I’d gotten a long time ago.

I’d said for anyone who spends a lot of time in bed, or those who struggle to hold a devices this is the perfect product for you. With this Flexzi 3 you can clamp it to a bed rail, an over bed table, a wheelchair frame or table to name a few places.