What Do You Do All Day??

ABILITY LEVEL

Note: This is going to vary wildly with your ability level. My current ability level means I have to be basically 100% flat lying down all the time and can't manage a recliner chair or wheelchair. If you can move around or sit in a recliner chair then your options are greatly increased.

STRUCTURE

Create some structure for your days. Humans do best with structure and if you don't have work or school to impose structure on you, best to create some. It's also best for insomnia/sleep hygiene if you go to bed and get up at similar times each day. Structure doesn't mean be inflexible, it's more like having guidelines.

My days look kind of like this:

  • Between 10am-11:30am - Wake up. Shift to day bed (where my computer is).
  • 12pm - Lunch (my morning helpers are here from 10am-12:30pm so I have to eat before they leave).
  • 1pm - If I have any people coming over to visit me, phone calls to make, or anything else that's challenging then I schedule it between about 1pm-3pm.
  • 3pm - Nap time! I rest/sleep in my night bed from about 3pm-6pm.
  • 6pm-7pm - Wake up.
  • 7pm - Dinner time.
  • Evening - I do easier stuff in the evening, because I can't think as much.
  • 11pm - Bedtime. Back to night bed.

COMPUTER

Most importantly, I've rigged up a computer so I can use it lying flat on my day bed. This means I don't have to sit up or even be tilted up to be able to use it. I also rigged up my TV so I can watch it lying flat on my computer's screen.

This doesn't solve all my problems - it's still super hard (and painful) to type (and voice recognition doesn't work for me) - but it does mean there's a hugely enlarged range of things I can do with very little physical effort.

If you use a tablet computer you need to be able to lift your arms up to the screen to use it, whereas a computer can be controlled with a trackpad. Trackpad sits beside my hip on the mattress and I can just move a single finger a few centimetres to operate it.

I also have an on-screen keyboard rigged up so I can type just with the trackpad if I need to. That's very slow but it's good for short bits of typing because picking up the keyboard is hard. I rest the keyboard on my stomach for longer bits of typing like this article but it hurts. I've been experimenting for years with alternative keyboards and wearable things but I haven't found a good solution yet. Stay tuned.

AUDIO STUFF

I guess the stuff I do falls into two categories - things to listen to, and things I do on the computer.

For me, things I can shut my eyes and relax my body and listen to takes less energy. This will totally vary for other folk though depending on how your brain fog works, etc. Figure out what works for you.

Things I like listening to include:

  • Audiobooks. These come from apps like BorrowBox and OverDrive that my library makes available free, and from sites like audible.com or iBooks where you can buy audiobooks. If you find it hard to concentrate, look for young adult (YA) books which often have a simpler plot, or books of short stories.
  • Radio. I love listening to talk radio - not the shouty kind, the informational kind like BBC Radio (UK), NPR Radio (USA), and ABC Radio (Australia). I listen via apps on my iPhone usually. It makes me feel less alone to listen to radio that's going out in real time - it somehow feels less isolating than recorded stuff.
  • Podcasts. There are a huge range! You can get everything from recorded interviews or round-table discussions to very highly produced radio-play style things. My favourite are podcasts like Escape Pod, PodCastle, and Light Speed which are audio produced short stories. 30-45 minutes isn't too long to concentrate for me.
  • Audio Meditation Tracks. You can get recordings of these, or listen to them on places like YouTube or use specific apps like HeadSpace or Insight Timer which have recorded meditation tracks.
  • Background Sounds. These are the lowest-energy. When my senses are all overloaded I get one of those apps that generates background noise like waves on a beach, bird song, etc. My favourite app for this is myNoise but there are a huge range to choose from. I like setting it up to generate some gentle bird song and rain noises and imagine that I'm in a tent in the jungle having an adventure.

** Super important hint: If you find spoken audio overloads your senses, try setting the speed to about 75% of normal speed and see if that helps. I find that slower audio sounds odd for a few minutes but once my brain adjusts it just sounds normal but is less overwhelming. Many audiobook apps will let you slow the audio down. **

COMPUTER STUFF

Doing stuff on the computer takes more energy than just listening, but it's also a lot more interesting so it do it whenever I'm well enough.

Typing things - like this article - takes the most energy for me but it's the most rewarding. It lets me do blogging, writing about my experience, using message apps to chat to people, and writing on social media such as Facebook.

Watching video takes a huge amount of energy for me and I don't really enjoy it, but if you're into it that gives you access to TV, videos, movies, etc. It's not my thing but I know lots of sick folk who love watching videos.

There are a billion short courses online that you can do for free, and many of them let you work at your own pace so nobody will mind if you take 3 months to do that 3 hour course. And even courses that aren't meant to be done at your own pace can usually be done at mostly your own pace if they're free courses - they're very flexible or you can just sign up multiple times if that works for you. This lets you learn anything from primary school maths to university courses to fun things like blogging, photography with a smart phone, etc.

Art! You can do lots of visual art-related things that are completely or partially done on the computer. Photography of course, drawing, collage, cartooning, etc. You can use online tutorials, articles, and short courses to learn how to use them. If your hands let you, you can use a graphics tablet to draw with too.

Online computer games can be good for passing the time, especially the type which don't have any time limits on them. There are basically an infinite number of free online games available, so figure out what suits you.

I also use social media - Facebook, Twitter, Tumblr, Instagram, whatever suits. Be careful that this can be a time/energy suck so you might have to set limits for yourself. Try to make sure you're using it in a way that enriches your life, and it doesn't make you feel worse of course!

If you're interested in fiction or reading blogs, the internet will also provide a basically infinite supply of reading material and you can even get the computer to read it out to you if your eyes are having a bad day.

Did you know there are also live cameras (called "livesteam"s) where you can watch things like baby kittens or what's happening on the other side of the world? Try a site like https://www.earthcam.com or google for what you're looking for, such as "kitten livestream".

SITTING UP

If you can sit up, even partially, your options are greatly increased.

I can't do this any more but some of the things I did in the past when I could included:

  • Knitting
  • Crochet
  • Tunisian Crochet
  • Reading (physical books or ebooks)
  • Embroidery
  • Sewing
  • Applique
  • Painting
  • Drawing
  • Cooking (sitting down you can do almost everything needed to cook)

Basically almost any art and craft activity that doesn't need power tools (and some that do) can be done sitting down. Some things others have suggested to me that they like doing include:

  • Colouring in (either with pencils or using an app)
  • Needlepoint
  • Building Lego
  • Puzzle books like logic puzzles, sudoku, crosswords, etc.
  • Scrapbooking
  • Learning/playing a musical instrument, especially an easier one like Ukelele (hint: Lots of YouTube videos to teach you!)

Don't be afraid to experiment with positioning - does it help to have a foot stool? Sit in a reclined recliner? Pillows under your elbows?

Also assistive technology - built-up crochet hooks for people with arthritis might be more comfy to use. Pencil grip holders might help you hold a pencil. What about an easel so the paper's held up in front of you? Be creative!

Also if you are well enough and your disability allows, deep breathing exercises and some very very very simple/basic/easy exercises might be helpful. If you're bedridden I'd recommend finding a physiotherapist or exercise physiologist to help you figure out what gets you the most efficiency from a small amount of movement.

PROJECTS

I find that having something to work towards helps me feel like I'm getting somewhere.

During 2016 and 2017 I learned to use Inkscape, a free computer drawing/design app, and then used it to construct my deck of Energy-Saving Self Care cards and then set up a website so people can buy them online.

This year I'm working on an article about occupational deprivation in bedridden people and what it's like for me.

It doesn't have to be an objectively large project, but for me at least it does help with that sense of "everything is always the same" and let me feel like I'm achieving something and moving forward, even though physically I'm getting sicker.

Hope this gave you some ideas!