Accessible Tips on Passing the Time While Bedbound With Chronic Illness

When I first got severe myalgic encephalomyelitis (ME), I absolutely hated all the time I had to spend in bed. It’s been two years now, and I still have to spend a large percentage of time in bed. But I’ve found some ways to make it less tedious, and thought I’d share them with anyone in the same position, whether through ME or another condition.

Some of the suggestions might be beyond your capabilities, and I know how depressing that can be. Personally, I find it very hard reading about people with mild ME and their tips that are beyond my reach. But I hope everyone can get at least one useful idea from this post. It might help to know that not all the tips here are things within my capabilities.

Some of the ideas are grouped under different senses, so you can skip any that definitely won’t be helpful to you.

If you have a carer, you could ask them to help you with the practicalities or even read the post and pick out the useful tips. (Also, if you need extra guidance on how to implement any suggestions, feel free to ask in the comments section).

Imagination

Using your imagination can be tiring, but can also pass the time if you’re able. You could start off by something like using images of funky people or characters and imagining their back story, or, if it won’t make you too sad, images of cool places around the world. You could imagine what it’s like to be in a temple, a cave, watching a sunset from a cliff top and really take time to do it, like in a guided meditation. There are lots of websites with many images such as Pixabay and Getty Images where you can see images that spark your imagination. You can imagine what smells, sounds and sensations there might be in various places, or imagine what scenario might be happening in images of people interacting.

If you feel able to take this up a notch, look up short story ideas in Google and use those as prompts to allow your imagination to wander. A less strenuous version would be having a list of films you’ve seen or books you’ve read and taking time to remember the events in them or even imagine how it could have ended differently. World music can also stimulate the imagination in a gentle way.

Sight

One of the best tips I came across was to regularly change the pictures on the wall. If you can position your bed so you have a view, that also helps.

I also like “stained glass” type images for the windows, which is great if you have a boring view.

Having art books or magazines on hand might be good if you can handle books, or use voice activation to access art or photography online. You could also set up changing screensavers on a laptop or digital photo frame if appropriate.

I can’t use screens for long, but love a few minutes looking at pretty images on Instagram every few hours.

If I had more space in my bedroom, I’d invest in a night sky lamp. You can also get remote-control activated color-change lamps or, more cheaply, lightbulbs. You may also enjoy candles if safe to do so.

A banner promoting The Mighty's new Spoonie Life Hacks group on The Mighty mobile app. The banner reads, Make life with chronic illness a little bit easier. Join the Spoonie Life Hacks group to get tips from other spoonies for tackling everyday tasks — and share your own hacks! Click to join.

Taste

Try sugar-free sweets if you are OK with sweeteners (though they say too many can cause laxative effects so take care!) or flavored gum if you can. An alternative would be having a fruit salad to eat slowly over an hour, savoring each different taste, if able. Or try a different fruit/herbal tea every day for a month and really take your time savoring the tastes (that’s one I couldn’t easily do — the floor and bed would get more taste sensations than I would!). Try mindful eating practices for your favorite meals, if able, eating slowly and focusing on the textures, tastes, origin of the food and gratitude for being able to eat it.

Smell

If you aren’t too sensitive to smells, have some mini perfumes or perfumed paper tabs by your bed that you can smell when you’re bored. Scented candles or soaps can also be used, or fresh flowers if you access to them.

Sound

Music streaming platforms are a whole world to explore if you’re able, with endless playlists. This was a real game-changer for me. I find music with words tiring, but have gained a new interest in contemporary classical music, ambient music and word-free jazz. Music can help your mood and stimulate the imagination, and on some platforms (e.g. Soundcloud) you can interact with the musicians as well.

If music is too aggravating, you could try nature sounds or various kinds of guided meditation.

It’s probably quite obvious but some people also enjoy audiobooks (though not me – they make my head feel like it will explode!).

Touch

Try having pleasant things to touch near your bed: a fleecy blanket, something carved or embroidered, velvet, a really soft stuffed toy — whatever you like.

Consider a light massage if appropriate, or even a massage tool that can be bought online.

Maybe even get some Play-Doh or similar and make funny objects or characters.

A fun project/goal

It might be to watch every film on a Best 100 Films list, or to try every flavored tea you can get hold of. It might be to sign a petition you care about every day on Change.org. Or it might be a piece of embroidery to work on or making a playlist or a gallery of pretty images. Just make sure it’s enjoyable and achievable; it will really help the time pass and give you something, however small, to look forward to or care about.

Be open to gaining new interests

Since getting severe ME, I’ve become interested in new genres of music, number-by-sticker books and sitcoms. Be open to new interests — whatever is accessible to you. It will help you get over the things you’re missing.

Do you have any additional ideas? Share below!

Tags :

More blog posts