List of low-energy activities appropriate for PWMEs

[Patrick*]

Lately I've given a lot of thought to the subject of maintaining happiness while suffering from ME/CFS--especially for those like me who are newly diagnosed and still adjusting. By my way of thinking, one of the keys is to find interests/activities that can be handled by a PWME without causing a crash. Personally, I had to replace jogging and surfing with things like painting and drawing. I've also finally found the time to do certain housebound tasks that I'd never got around to: like scanning my old print photographs.

I thought it might be useful to ask others what kinds of activities/interests they've been able to pursue since contracting ME/CFS. My thought was that we could possibly inspire each other and exchange new ideas.

A few that come to my mind are:

* Painting/drawing
* Listening to audiobooks, or actually reading if still possible
* Playing/learning a musical instrument - (maybe only for higher functioning PWMEs?)
* Watching movies (especially with a specific goal, like watching all Best Picture winners, etc.)
* Jigsaw puzzles. (I confess, I like them!)
* Editing home videos and photos into themed "movies."

There must be a million others, but I'm drawing a blank at the moment... Please share any that work for you.

 

[Calathea]

* Quilting. You can practice it at any level, from simple to complex, and there are lots of different techniques involved, so hopefully you can find something that suits you. You need to be able to sew by hand or sit in front of a sewing machine, though, that bit is fairly crucial. Sometimes I just sew for five minutes at a stretch, in order to pace my arms and avoid RSI. I find it to be madly therapeutic, and in fact just gazing at a pile of fabrics can cheer me right up. It doesn't seem to be too demanding of brain powers, either.

* Audiobooks. I do better with these than with reading as my eyes are iffy (and yes, I can sew even when I can't read - it's to do with eye movement fatiguing the muscles and neurological problems). I get fidgety if I don't do something visual while I listen to an audiobook, so I either play a very basic computer game such as solitaire (be careful not to induce RSI - I threw out the mouse for this reason) or sew when I'm up to it. If I'm tired, I often pick books I've read often before, or children's books, as they're easier to understand.

 

[Merry]

Photography.

I like your blog, PW.

 

[SickOfSickness]

Watching, cuddling, playing with pets.

Watching nature through the window or sitting outside.

Writing in a journal or letters to friends.

Baking or cooking.

Hot baths.

Talking on the phone with friends. (Too much for me, but some PWME can.)

Musical instrument? If I knew how to play and was good, it would be relaxing. I used to relax by playing the one or two basic songs I knew. Now too challenging and stressful for me.

Most photography is also physically challenging for me

 

[CJB]

It's funny what is impossible for some is a good activity for others. No way I could do a jigsaw puzzle or edit home videos. Reading is also very limited. But I did learn how to play the harmonica when I was at my very sickest. Thank you, Smothers Brothers. I previously had played piano and guitar and knew how healing it was to play and finally thought of trying a harmonica. You can play the harmonica lying down. And singing is very good too.

Movies, radio, audiobooks and tv are my mainstays. And meditation is my newest adventure. I've meditated before, but got more disciplined on the advice of a naturopath. I finally got over the idea I had to sit up and started lying down. Now I can sit, supported, most days.

 

[Sallysblooms]

Photography in my yard and home. Growing African violets are two of my favorites. I can't garden outside much right now, hubby does it for me.

We love to watch shows on TV, movies. Go out to restaurants, shopping. I have a cute scooter I use when we go to large stores. My CFS is not a problem now, but POTS keeps me from walking and standing too long.

We have a little dog and bird, that keeps me busy.

 

[ukxmrv]

I'm largely stuck in bed or lying on the sofa (but can get outside sometimes now) so activities need to be very low-key for me. TV is out apart from when I have some more alert times in the evenings. Tried to learn a new language but the cognitive problems made this impossible. Was forgetting things from one week to the next and constantly having to start again.

I used to paint before ME struck but I cannot hold my arms up long enough. Same with photographs. Not able to look after a pet and sadly allergic to cats, dogs etc. Too weak to talk on the phone much. I've tried knitting, sewing etc but too weak for that. On a day to day basis I cannot even look after my physical and hygeine needs so these need to take priority. Also things like money and bills are very hard to manage with no strength.

One hobby I've stuck with is trying to learn to play a piano. Doing a little on a keyboard at my bed but not physically able to sit up at a piano. I listen to the Radio a lot and find the UK Radio 4 mix of programs is about all I can handle. Cannot cope with movies unless it is during one of the better times I get at night or evenings. Read then if I can.

Something I do enjoy is campaigning for issues around ME and I find it very satisfying to always have a small project on the go. It can take me years to do things but satisfying over time. This keeps me in touch with like minded individuals and has made a huge difference to the loneliness of being stuck at home with no company and too weak to have visitors or talk on the phone much.

 

[Patrick*]

These are all great responses, and all ideas that had never occurred to me.

I'm thinking of creating a sort of 'master list' of such ideas on my blog so that new PWMEs in the future can look to it for ideas. Hopefully this thread will also serve that purpose.

I realized that "low energy activities" is relative to each person's level of illness, but I wasn't certain how to address that. I considered sub-dividing the question into different levels of ability, but I think that would get to complicated.

 

[Ocean]

Some ideas:

Tv
Browsing internet
Watching movies online
Knitting
Playing a small instrument, especially one that can be played while reclining/laying down
Listening to music
Sitting/ laying down outside in fresh air
Writing, journalling
Emailing
Daydreaming
Researching things online
Drawing, sketching
Relaxing bath
Organizing files on the computer, cleaning out email inbox, etc.
Doing things in small bursts, like a tiny bit of organizing, cleaning up, etc.
Sitting at a park, or laying on blanket in park grass
Stretches
Meditating
Resting

 

[SickOfSickness]

Sunbathing (if heat tolerant)
Scrapbooking

 

[Googsta]

Jewellery Making is quite relaxing too.

I bought myself a table on wheels from eBay, it's just like a hospital table. You can use it for meals etc. The table itself tilts so you can use your laptop or paint whilst laying or reclining. It has a padded rest for your arms & fits over my recliner too so I don't have to hold my arms up. Aside from my wheelchair it is the best thing I ever bought for my health.

 

[justy]

My activities have changed since beginning to recover more.
For two/three years i enjoyed
audio books
radio plays (radio 4)
sewing
tapestry
joining and chatting on forums
meditation
sitting outside under a blanket watching nature and the kids play.

Now i am functioning much better i can
potter in the garden, sowing seeds in trays etc (not everyday or i crash)
baking

But most importantly of all i gave up on the idea that one day i would have a full time career and earn enough money to help my family out financially and thus gave up on trying to train myself for something useful (everytime ive had a remmisssion ive done this and then crashed again!)
So instead i decided to do something for myself that i have always wanted to do, but never had the time for - i did a creative writing course on line - now im at the end of my second course and am going to carry on and try for a degree in English Lit (Open University - on line) I have started wrtitng short stories and enetered two competitions, as well as writing poetry and have started on a book. Next year i paln to apply fpor a writers grant for disabled writers to build a writing hut and employ soemone for a few hours a week to help me research and type etc.
The biggest challenge for this has been cognititve fatigue - my writing goes dyslexic the more tired i get and i often spoend ages staring into space trying to remember words. But it has made my life so much more bearable and given me something to aim for, apart from my family.
Good thread, Justy.

 

[alex3619]

One that a few of us guys do is play RPG computer games. I can barely walk a lot of the time, can't walk at all some of the time, but on my computer I can run through a forest for a long time indeed. Most of these games have a combative element though, and the pseudo-3D graphics is difficult for some PWMEs to handle. However its something you can do on a laptop.

For a less combative version of the same idea there are online worlds like Second Life. You can ski, parachute jump, fish, dance and go shopping ... all from your bed on a laptop. Again, the 3D graphics and sometimes the sound can be a problem for some.

Bye, Alex

 

[Calathea]

I wouldn't bother trying to subdivide it by illness level, it's too complicated. For instance, I can sometimes sew by hand, but I can't knit and I usually can't read normal-size print. This is because both my eyes can do one thing but not another, e.g. I can hold a sewing needle but not grip a knitting needle, and I can look straight at a fabric sewing line but can't move my eyes back and forth along a line of standard-size text.

You could perhaps divide it into indoor vs. outdoor activities, that would be something. And perhaps tick boxes for what systems are likely to be taxed by it, e.g. browsing the internet can be tiring to the eyes, brain, and the light from the computer can keep you awake at night; sewing can cause small-scale eyestrain, general achiness from sitting in one position, and hand/arm pain.

One of the most important things I have learnt is to do activities with a stopwatch around my neck for pacing. After I had a bad bout of RSI last year and spent four months barely able to use my hands at all, I was down to using my hands for a few minutes at a time to start with.

 

[Calathea]

Crafty types - can anyone comment on how easy crochet is to take up, and what it's like on the hands? As I said above, I'm generally OK with sewing by hand, but I've always found knitting needles hard to grip, and I have difficulty holding a pen as well (can do limited sketching for the quilts, but hopeless at writing). It occurred to me that if my hands can manage crochet, it might be easier to do in bed. At which point it occurred to me that a simple granny afghan is meant to be easy to make, just lots of plain squares, and something like a variegated red mixed randomly with black squares would probably be nice for my father-in-law's sofa.

 

[SOC]

One that a few of us guys do is play RPG computer games. I can barely walk a lot of the time, can't walk at all some of the time, but on my computer I can run through a forest for a long time indeed. Most of these games have a combative element though, and the pseudo-3D graphics is difficult for some PWMEs to handle. However its something you can do on a laptop.

For a less combative version of the same idea there are online worlds like Second Life. You can ski, parachute jump, fish, dance and go shopping ... all from your bed on a laptop. Again, the 3D graphics and sometimes the sound can be a problem for some.

Bye, Alex

Oh! I'm jealous! For a long time I couldn't keep up with the speed of my favorite RPG. It would have been wonderful to be able to play during those long boring resting days. Maybe I should try again now that my brain is working better most of the timre.
SOC, half-elf wizard extraordinaire

 

[SOC]

Crafty types - can anyone comment on how easy crochet is to take up, and what it's like on the hands? As I said above, I'm generally OK with sewing by hand, but I've always found knitting needles hard to grip, and I have difficulty holding a pen as well (can do limited sketching for the quilts, but hopeless at writing). It occurred to me that if my hands can manage crochet, it might be easier to do in bed. At which point it occurred to me that a simple granny afghan is meant to be easy to make, just lots of plain squares, and something like a variegated red mixed randomly with black squares would probably be nice for my father-in-law's sofa.

Crocheting is what I took up when I had to rest so much. The worse I am, the more I crochet. It makes me feel a little bit useful because I can make hats, scarves, or afghans for other people (or myself, of course).

Early on, my fingers would get numb from holding a crochet hook. Too much inflammation, I suspect. I found that these two hooks relieved the problems I had holding a hook:
http://www.joann.com/susan-bates-bamboo-handle-aluminum-head-crochet-hooks/xprd90120/
http://www.anniesattic.com/crochet/detail.html?prod_id=21944&cat_id=970

Also, if you have trouble holding a hook and you use the pencil grip, you might try using the overhand grip because you can use your last two fingers to help support the hook.

A granny afghan is also nice thing to do in the summer because you don't have all the weight and warmth of a full afghan in your lap all the time. I'm working on a strip afghan for my daughter's boyfriend's mom. http://www.ravelry.com/patterns/library/absolutely-gorgeous

 

[SOC]

I might subdivide the list by something like "useful" and "fun" activities. Not that some can't be both.

Sometimes I need to do something useful to maintain my mental health. It would be nice to have a list of not-too-taxing tasks readily to hand. Other times I just need not to be bored out of my skull. Then the "fun" list would be an inspiration.

 

[Xandoff]

These are all great suggestions. For those with insomnia a netflix subscription or hulu or whatever really helped me through a tough time. Great selection of movies and very relaxing with headphones and good computer. It is a challenge to "accecpt" this shift shapping, zombie dead disease! I have learned to fight back when I my old programming wants to kick in and deny that I am sick.

Let go...listen to music, lie down try to think like a cat.

 

[heapsreal]

i like watching some older shows like 'cheers' etc, sometimes u forget how funny these shows can be. Also listening to songs on utube and then u can get related songs suggested down the right hand side and u can find some good golden oldies etc that u have forgotten about.