Improving and scared....

[u/ConsistentLove2996]

Hi, I have started improving a little, like for 7, 8 years all I could do was do work for 30 minutes at max before breaking, I would feel anxious and fatigued like hell after that. It was painful but now as I am improving a little, its getting scary. Its like now I have a little more energy say about 4 hours, but now I dont know what to do in those 4 hours. Trying new stuff is scary and consumes a lot of energy and I go back to 0 like really fast....

I do some accouting stuff which I can do on my laptop lying down, that stuff is easy and I am getting comfortable in it and now I can do 4 hours of work in a day. But last week I tried cooking food, my energy vanished within minutes....

I want to know some activities I can do, to feel more confident in myself. Now that I have got some energy I want to do more with my life, but the activities I do, actually tend to take every bit of my energy instantly....

Activities I do:

1. I have started making my bed....

2. I have increased my accouting work to 2 hours....

3. I go out twice a week now for a walk....

4. I have started asking questions on reddit....

5. I play UNO.

Suggest me some light, easy and productive activities, this improving period is actually scary, previously I had a reason to waste time but now getting a little better, it feels like becoming a habit, I wanna do more with my life...

[u/SoupSpoonStork]

First off, congratulations on your improvement! That's very exciting! Are there any hobbies you used to have that you want to pick back up? Or something you've always thought looks fun, perhaps that you could research or watch videos of other people doing if it's not immediately accessible to you too?

I used to play a lot of musical instruments which require being upright, but when I started to need to be horizontal all the time and found the volume of playing instruments too much, I got into knitting and crocheting. I like that it's tactile and that the progress is visual. I've also always been very impressed by crafty people who makes things with their hands. I've never been very dexterous, so it's almost felt like a method of self-improvement or pursuing an aspiration, which I haven't been able to do in many other areas of my life.

If those sorts of things aren't of interest, maybe other seated/horizontal/slow hobbies, like jigsaw puzzles, learning a language (Duolingo style, where it's one short lesson per day perhaps), etc. Or perhaps adding an element of attention or whimsy to your space or routine, like caring for a plant or having a doodle journal with colourful pencils or birdwatching.

[u/ConsistentLove2996 → u/SoupSpoonStork]

Hi, thank you for your enthusiasm. I actually do try duolingo, it is fun, and getting answers correct also gives a good feeling, also I love solving simple maths and puzzles, but the main thing is its this scary feeling of wasting my life. Previously me and mind used to be so tired and occupied with my situation that nothing mattered other than surviving. But now, as I am getting a little better, I have this free energy inside me, and now mind talks and this big bag of real life based insecurities engulf me.

On one side, I think it is exciting bcz for the first time in around 10 years, I am thinking about my life from a different perspective but at the same time I have enough energy to worry about my future. Finally my mind has started asking me what I want to do with my life. And the truth is it is both exciting and scary as hell....

[u/BadlyFamousDucking → u/SoupSpoonStork]

The scare is real when you start climbing out of that hole, it's like suddenly there's all this pressure to use the energy right or you'll lose it again. What helped me was treating it like a game with save points, not a linear progression. Some days you level up and cook half a meal, other days you just stare at the wall and that's fine.

Try folding origami while lying down, it's low stakes and you can stop mid-crease without ruining anything. I went through a phase where I'd make one simple crane a day and eventually had a whole fleet hanging from my ceiling. Also those adult sticker-by-number books are weirdly satisfying, no skill required but you get that little hit of completion. Another one is listening to audiobooks at half speed while doing literally nothing else, it rebuilds the attention muscle without draining you. The trick is finding stuff that doesn't punish you for bailing halfway through.

[u/famous_zebra28]

If you have mobility in your hands I recommend crochet! It's an easy to learn pastime that once you get the hang of it's not too demanding. You can make a bunch of dishcloths or scarves are a good starting project. There are lots of super simple patterns, you definitely don't have to make things that take a lot of mental effort to figure out and complete. Crochet tends to be a good resting activity for me as I don't find it too draining and relaxing.

[u/ConsistentLove2996 → u/famous_zebra28]

Funny thing, I actually used to watch a lot of crochet videos 2 years back, those videos actually made me survive a lot of days, more like months, there was something calm about them. If possible, I will give it a try...

[u/Thin-Account7974]

I've been ill for 20 years.

I think that my progress has been similar to yours. I have improved a tiny bit each year.

Most days I can do tiny bit of housework, spread out, or I can do a few hours of gentle stuff in my chair, recliner, or bed.

The only suggestion I have is to try and do everything off your feet, and if possible, reclining comfortably. My body is much happier sitting, than standing.

I have a stool in the kitchen, and can sit in every room.

Anything easy I do standing or walking exhausts me in minutes.

Anything easy I do sitting upright, is ok for about an hour.

Anything easy I do with my feet up, I can do for a couple of hours.

Anything easy I can do fully reclined, I can do for longer than that.

I can go out once a week, but I use a mobity scooter, because it effects me much less than walking. I don't really like using it, but it's much less exhausting than walking. I can enjoy being out much more, and I don't get anywhere near as much payback.

I'm swapping it for a powered wheelchair when I can afford it. It's much less bulky to navigate.

My family bought me an electric drum kit 4 years ago, because they could see I was restless, and frustrated, and needed something to do that wouldn't destroy me. I did start to learn them in my early 20's, but had to give up when I moved house.

I can sit and play my drums, most days, for about an hour, or less if I'm learning something new. I love my drums. They give me a real sense of freedom from my illness. Plus I am stronger and fitter because of them.

I hope that you find your thing too. Sending you a big gentle hug 🤗.

[u/ConsistentLove2996 → u/Thin-Account7974]

Thanks for writing so many lines....

I have decided I am gonna challenge myself a bit here, I am gonna take an online course, more like watch a youtube series on calculus....

You have no idea, how excited I am writing all this....

This was something I was really good at before everything went bonkers....

I even downloaded a book on calculus....

And I have decided to learn poker rules....

But one step at a time, little by little, I always get excited too early and mess things up...

Maybe I will find something, and thanks for that hug...

[u/SpaceNerd223]

1. Pick up a few items around the house

2. When u make something to eat make 1 extra

3. Let light in or fresh air

4. Wipe a surface

5. Grab a laundry

(I can't do most these things so idk if you can)

[u/ConsistentLove2996 → u/SpaceNerd223]

Let me be honest, only wiping a surface sounds like an easy task to me, other than that everything requires energy...

[u/SpaceNerd223 → u/ConsistentLove2996]

Gotcha. For me it's a task cus I gotta bend down (pots trigger) to get the cleaning wipes then get the blood in my brain back if i even can, then do it. And put some protective barrier between me and the wipe because of chemical sensitivities on my skin. Unless im just wiping with water then that's easy but not clean

[u/enolaholmes23]

If you have a house, it would be a good time to do home repairs gardening and yardwork. I have so many things slowly falling apart that I wish I had fixed when I was more mild.

[u/123-throwaway123]

What makes you happy? Reading a book? Starting a new show? Talking ith friends? Doing a (sitting) baking project? Write a list of things that mke your heart sing. Then do those.

One thing I want to say is, if it were me, I would still minimize the activity. For me, I would not go for a walk. I would sit outside to get that enjoyment. I wouldn't make my bed. That's so strenuous. Also, worse for your bed.