Living with conditions like severe ME is hard. Gold standard health recommendations like sunshine and exercise simply don’t apply to us. And most of the articles out there suggesting activities for bedbound people assume a higher level of functionality than we generally have. I decided to fix this by writing a masterlist of activities pitched at a level severe ME patients can manage.
I’ve been bowled over by the response to Part 1 of this list. Thank you all for your kind words and feedback! Today we’re moving on to Part 2 . Part 1 covered activities you could do with your eyes closed in silence, while Part 2 consists of sensory activities you can do in your bed. (Part 3 will focus on things you can do to pass the time on your device.)
Thanks again to the ME/CFS communities on Facebook and Telegram for contributing to this list. It wouldn’t be half as big and rich without you.
Note: These activities are by nature more energy intensive than those in Part 1. Please exercise caution.
1. Get some sensory toys and play with them in bed. Most toys designed for autistic people are suitable for this. Examples include fidget cubes*, fidget spinners, chewable jewellery* (buy the softest possible to avoid exhaustion), spinner rings*, koosh balls, ball magnets, putty, play dough, fidget blankets, etc. If you can tolerate weight, invest in a weighted lap pad* or blanket.
* Products I personally use.
2. Hug a teddy bear or a pillow. If you’ve got a person, hug a person! If you don’t have any of these things, hug yourself.
3. Give yourself a soft massage. I find massaging one hand with the other easiest. You can also invest in an electric massager, or ask a loved one for a massage if that’s an option. If none of these are possible, imagine getting a massage!
4. If you have a pet, snuggle with them! Have them lie on you so you can feel their weight. Gently stroke their fur/feathers/scales.
5. If you can tolerate them, invest in some of the following: acupressure mats and pillows, satin pyjamas, REALLY soft blankets*. Anything you enjoy against your skin that can give you a sensory boost throughout the day.
6. If you have a beauty regime, it can be a great opportunity for sensory pleasure. Mindfully rub cream into your hands. Gently clean your nails. This one requires more effort than most things on this list, but a lot of people I spoke to swore by it.
7. Give yourself some temperature therapy! Use a heating blanket/pad or hot water bottle if you’re cold, or ice packs or a cool spray of water if you’re hot. We use these things for symptoms management all the time, but they can be pleasurable sensory activities, too!
8. Indulge in self stimulation. You’re probably making a dirty joke right now, but “stimming”, or fidgeting, is an autistic tool that can be of great use while bedbound. For me it looks like rubbing my feet together, jiggling my leg, or playing air piano. Other people brush their skin with sensory brushes*, gently ping a rubber band on their wrist, trace words in cursive on their arms, finger comb their hair, all kinds of things. Whatever your natural fidget movement is, give yourself the freedom to do it for a little while. Avoid this if your natural fidget movement is something that will cause you to crash!
9. Give yourself some soothing mammal strokes. My therapist taught me that the human body responds to self-touch as if another human is touching us. This means you can stroke yourself to to self-soothe. Find the part of you where negative emotions rest (for me it’s the neck) and give yourself gentle, soothing strokes. You can also say soothing things to yourself. It doesn’t matter that it’s just you doing it. Your body will feel it and be calmed.
10. Engage in mindful listening. The composer John Cage wrote a piece called 4’33” in which any noises you hear are the music. I love to lie in bed with my eyes closed listening to 4’33”: the hum of traffic and the twitter of birds all combining to make my own private symphony. If you’ve never done this before, the trick is to listen with an open mind. No sound is bad. (Okay, lots of sounds are bad, which is why I only recommend this if you have quiet background noise.) But no sound is not music. Consider each sound you hear as though you’ve never heard it before.
11. If you can tolerate audio, engage in familiar listening. For me this means music or podcasts I’ve heard many times before. The key thing here is not to be listening actively, but to be able to tune out and just let the sound wash over you. You can listen to new content, too, but it will take a lot more effort.
13. Make an ME playlist out of songs that resonate with your illness struggle. The benefit of your own playlist is all the music will be familiar — but if making one is too much, try this excellent Spoonie Life playlist by Emily Adams or my own short ME Anthems playlist.
14. Play very soft nature sounds on your phone and use them as a guide to visualisation. Imagine you are wherever those sounds are — a beach, a forest, a jungle — and visualise what it looks like in as much detail as you can.
15. Have a beauty hunt: find 5 beautiful things around you or out the window if that’s an option. They don’t have to be different things each time; you can always appreciate some thing’s beauty anew.
16. If you have the right environment for it, bird or animal watch! I have a bird feeder outside my window and it’s wonderful to open my eyes briefly and see a little flash of nature.
17. Look at photos, art or picture books that make you happy. This one takes some setting up in advance, but it can make all the difference when you’re feeling down. Keep a collection of uplifting photos by your bed or on your phone. You can also make an encouragement wall with cards from friends, uplifting sayings, reminders of coping skills, etc.
18. Go around the room and see how many objects of a certain shape you can find. I like circles, but any shape works. It’s a hidden object game in your own room!
19. Bring a nice smell into your room. Perfume or essential oils are great if you can tolerate them, but as someone with fragrance sensitivities I get herbs I’m okay with and crumble some into my pillow instead. You can also open your window for some fresh air and catch the smells on the breeze.
21. Have a treat: eat or drink something tasty. Make sure to eat it mindfully; don’t just gobble it down with your eyes on your phone. Enjoy each sip, savour each bite. Make this taste sensation a sensory holiday.
22. If sensory stuff is too much for you, take an escape from the senses. Avoid scent. Wear earplugs. Wear an eye mask. You probably already do these things out of necessity, but try doing it as a pleasurable sensory free holiday!
Enjoyed this piece? Have a suggestion to add? Leave claps and comments below! Part 3 of the list will be uploaded soon…
NB: I receive no money from any of the links in this article. Unless they’re items I use personally they’re just included as examples.