I have a heap of disabilities and suspected ME and I'm really struggling to find anything I can do that doesn't involve staring at a computer for 5 hours straight.
I can't leave the house alone because of my autism, I can't walk far without triggering my chronic pain, because of my weak joints I have carpal tunnel syndrome so I can't do fiddly things like drawing or sewing for too long and I don't have the space or energy for larger crafts. Gardening drains my energy really quickly, cooking triggers my anxiety.
I get to leave the house for pre-scheduled recreational activities twice a week, but that doesn't leave me with anything to do for the rest of the time I'm home alone. I have suspected ADHD and can't concentrate long enough to read a book.
Does anyone have any suggestions for things to do?
Because at the moment I'm staring at screens for so long that it's damaging my eyesight.
@Rainbow-Zebra Hello again.
Hooray for computers but oh dear! I am the same. Sometimes I need to put on the timer for an hour just to make myself do something else. And it is very hard not to come back before time and try to distract myself with social media or a game or something.
I will write a list of things that work for me, just in case something is useful for you.
First is my LIST that is up on the wall and full of things I should do regularly for my health. In theory this means that every time I get up from the computer I should do at least one of them, hopefully three.
My list has things on it like:
Have a drink of water
Bath (sometimes I forget )
Eye drops/heat bag (from too much screen time)
The eye drops are for dry eyes, do you have them also? And I have a little heat bag just the right size to rest on my eyes, and this is good too because the warmth helps with the tiny glands around the eyes that make oils that make the eyes stop drying so much.
Hmm, I can see this is going to be a long answer so I will do it in parts. Part 2 coming up.
Hi @Rainbow-Zebra ..Gosh with all you have going on with your health and ability, I can understand how the usual array of activities that we can participate in, to keep us busy, entertained and fulfilled may not be easy tasks to do, for you or others in similar situations. I suppose we all have different levels of energy and ability at different times and sometimes it can be a barrage of so many symptoms, that activities are just out of reach. Our energies are spent just on daily tasks and there may be nothing left for hobbies or activities that reflect our interests. The key word here would be interests .... identifying what interests you the most, or what you may be passionate about or what inspires you the most.... it may be a few different interests .... once you have identified what it is you are most interested in, then perhaps working on solutions for you to be able to access or participate in those interests would be a great start. You mentioned recreational outings... Could those outings, be organised to reflect your interests? One of my interests that is low energy, low effort, is to collect things. I like to find objects of beauty, old books or trinkets that appeal to me. I find them when I am able to get out and about. I need to be with someone when I am out, so they take me to places I would like to visit, to find the treasures I desire. Small objects bring me joy. Photography is fun and fulfilling and doesn't require too much energy. Photographing objects can be very creative and a great hobby. Perhaps you have a great voice ...why not try singing? .... Either way, I'm glad you shared your desire to have a hobby and more interest in your life. Whatever it is you find that suits you, I would love to hear about it .... who knows maybe I have a similar interest or others here on the forum do ... check out the creative corner thread as well ... Here's an example of a hobby a friend of mine had who struggled with arthritis and carpal tunnel ...they used nail polish as paint (tiny nail polish brushes ... cheap bottles of nail polish and painted the most amazing scenes on the lid tops of miniature tins .... they would use a magnifier in front of the object, to reduce eye strain .. wow, ...
You say you can't do them for long, but I would encourage you to make the most of doing them at all. ME/CFS stuffs your concentration as well, so doing things for very small amounts of time will suit you best.
Work out what your limit is (say 10 minutes) and just plan to do half that amount at a time.
I know it will also take planning (especially with sewing) so you don't stop in the middle of something, or making sure you don't exhaust yourself just setting things up., but hopefully you can think of a way to make it work.
(My thing was textiles: knitting, sewing, weaving, crochet etc and I decided I had to focus down on the one thing that would be easiest to manage and give me the most pleasure, and so gave away everything except my knitting needles and concentrated on that, and mostly on making things from knitted squares. That worked for me.)
@Rainbow-Zebra That’s quite a challenge for you and I can understand your concern of computer overuse especially if it’s affecting your eye sight. We certainly couldn’t do without our tablets and computers but yes we need to set a daily limit. There are podcasts to listen to where you don’t need to look at the screen, or listen to the radio. My other thought is perhaps Lego. You can get the big blocks that may be easier on your carpal tunnel.
I know you said neither of these work for you, but I did just wonder if you might find a way to make them work better in your life.
If you can only do things for a few minutes, it is useful to have a wide range of things! And cooking especially, but gardening too, can make a difference to your health if they lead to good meals and extra greens to cook with!
Cooking: I've no idea how much cooking you do and how good you are at it, but I do know experts say that making a new dish over and over: ten times is the number suggested, then you will get so good at it you will be able to make it easily after that.
You might find one recipe that seems easy enough you could manage it, and then work on making it ten times over the next few weeks. Hopefully, each time you make it your anxiety would be less, and at the end of the ten times you might have an excellent meal added to your repertoire.
Similarly, with gardening, you might like one plantpot to grow something you really like. Thyme for example, that could be a lovely addition to your meals. You could think of it as a very easy pet, and one you won't mourn so much if you get too ill to look after it, and it dies. Watering and feeding it goes on your todo list. A bit of something growing can be really good for mental health, and every time you pick a bit of fresh herb you will feel like a champion.
If it is really successful and enjoyable you can add another pot of something.
@Dot Very good Dot. Well said and good ideas.
A very quick thought in terms of screens - the screen I use is a TV about 2 metres away with me in a recliner (at least feet up, generally fully reclined for watching/listening, and 'half up' for typing) - having the screen away seems to have limited the impact of significant screen use on my eyesight.
Another thing I do is I've got things set up so I can easily look out the window. If every hour you focus on something a long distance away (30 metres plus) for a little while (I'm not sure how long - maybe count to anywhere between 10 and 30?) that may help your eyes retain long-distance focussing. If you have a distant screen like me, focussing in short is also worthwhile.
Also, in terms of recreational screen use, I mix it up between watching, listening to music and slow-paced videogames. Having a few different things you use it for might help reduce that sense of 'oh, another hour looking at the screen'. Also, on windows, sometimes I like just looking out of the window a bit, but that may not play well with ADHD.
As well as the above suggestions, some other thoughts (please ignore any/all that aren't appropriate to your situation):
- Depending on your energy levels, if you could find a musical instrument that played well with your joints/carpal tunnel that might be something to do in shortish bursts.
- Single-player board games - they do exist, and if you're well enough to sit at/next to a table without it running you down, they might help pass the time.
- Painting may be easier than drawing on joints/carpal tunnel - less pressure required when pushing down on the canvas - but look out for odour sensitivities to paint.
Best of luck with everything - much sympathy and empathy for the whole 'so much time, so little capacity' thing.
Finally (I really do think this is my last one)
The two things that kept me going when my ME/CFS were a) the things I liked to learn about and b) planning
The things I like to learn about:
I was always someone who wanted to understand the Meaning of Life and all those big questions. This became even more essential when I needed a philosophy to account for a life with chronic illness and the human dynamics of how people understand or don't understand. So I listened to a lot of radio programs/podcasts/documentaries about science, philosophy, medicine.
I felt like I was giving myself a university education from my couch, and I have become a lot wiser, more knowledgeable and with a more robust sense of being.
I hope you can take the opportunity to educate yourself, a small bit at a time. All those bits add up over the weeks and months and years. You'll end up with an ME/CFS Phd!
I was the world's worst planner!
I think most people start off as bad planners and become better through life, but I am sure I was worse than most. I was passionate and impulsive and found planning so boring.
ME/CFS gives us the best reasons to practice planning. We don't have time to waste, we don't have energy to waste. We often only have one go to do something, so we need to do it right.
Those of us who are not good planners find it so, so hard. But it is a skill like any other, and we have long day after long day to practice. Also we learn most by trying something and then sitting back and analysing what didn't work and how we might do it better next time.
With ME/CFS we have forced rest time to do that analysis!
All planning boils down to three steps: Where are we now? Where do we want to be? How do we get there?
So today 1) You are somewhere with too much computer.
2) You want to find other things that can fill your day enjoyably and without making your symptoms worse
3) You put feelers out for ideas.
So then you can read all the replies and have a reconnaissance if any of them might be worth a try. Then you can make a plan for any of them!
Good luck, I'd better stop sitting at the computer myself now
@Daffy_Dave Good point about screen time ... most of us spend a lot of time in front of screens... I had to see an optometrist recently to update to more appropriate glasses for screens and reading. I'm still getting use to them ... they are progressive lens technology and can be a little weird at first ... but I can see greater detail now and this helps immensely.
1: You are all absolutely amazing
2: I'm building a Lego dragon now
@Rainbow-Zebra Super cool If you get a chance to share a pic when you're done, it'd be cool to see
@Rainbow-Zebra What a gorgeous hobby to choose!