What do you do to find joy and meaning in life?

[RobeAnJa]

It’s a big question. I know. But I’m curious about what you do to make your day to day life meaningful. I’ve only been sick since April 2020, but I don’t think I will get any better now. So far I have spent most of my time online reading about ”long covid”, POTS and ME/CFS. I’ve been trying different supplements or drugs to get better but nothing is helping. I don’t want to spend all my life in forums or facebook groups searching for a cure that don’t exist. So what do you do with your limited energy? I realise not all of us have the same limitations but I’m curious about what you do to pass time and find joy? None of the things I used to do as a healthy person is possible any more. I was very active and sports was my life. I will need to find new things to do. I live alone and have no kids.

 

[Levant]

I'm in a similar boat. For me the teachings of Ram Dass have been a lifeline, but I guess it's just about finding something that has genuine meaning in your life but that doesn't require health or make you cling to your past life.

 

[bensmith]

Learning! That is what inwould donif healthy.

hobbies and entertainment come next. But again not healthy enogunfor that.

then help others. Then last meditation/spirtiual stuff.

the biggest thing for me that was good isntjst life has no meaning! Do whatever thenfuck youwant! Some take that as negative but me i find it liberating.

 

[Hipsman]

Trialing experimental treatments is the meaning of my life, but when there are short periods of improvement in energy/brain fog I quickly shift to technology/computer programming, etc

 

[RobeAnJa]

I should add maybe that I don’t have huge problems with brain fog. I seem to be able to read, use phone, watch TV for a couple of hours without problems. But I’m not able to think about anything else than trying to get better. If I watch a game of football on TV, which I would have enjoyed when I was healthy, I lose interest in 10 minutes and look on my phone in search of that magic cure. So I need something that keeps me interested.

 

[Hipsman]

I’m curious about what you do to pass time and find joy?

I found watching playthroughs or streams of video games I like is really good for this as you use allot less energy then when playing yourself. For me the most important thing here is the person doing the commentary.

Also, the internet is too distracting to focus on one thing, sometimes I just download a playthrough or movie and turn off the internet, so you don't feel the urge find something better to do.

 

[Rufous McKinney]

But I’m curious about what you do to make your day to day life meaningful. I’ve only been sick since April 2020, but I don’t think I will get any better now.

I suspect many of us...spend more time than we care to admit, trying to cure ourselves, find cures, contemplate cures and cheer lead for those with the intent to cure.

I have intense cognitive issues but can manage to escape some into reading online....short things. Short paragraphs, short concepts...skim. Lots of skimming. I can enjoy a series or movie, so I feel lucky there.

Watercolor painting videos. I watch those, as I am trying to do some art myself, but finding that the actual doing is yet another ME-limited exercise. Art involves- holding a bunch of ideas/concepts and thoughts together in your brain with the intention that something will then manifest on paper. Its- real tiring. So 15 minutes of messing with some paints, I'm now tired and stop and I am not pleased with my 15 minute endeavor and i must persevere none the less. Because Persevereance furthers. But now my neck is aching and my back can't sit there long.

Oh well. But watching the videos can be very meditative and enjoyable.

Another related venue is: You Tube videos of , say ALL the paintings done by one painter, with music. Turner- go find Turner....William Turner....love love that stuff.

I then have moments of reliving music I like. A year ago, I was hardly able to listen to more than say one song...so I'm a bit better...one year later...a year of massive resting...I can listen to music for a little while without too much PEM after.

Ekhart Tolle videos....Mooji...these are enjoyable calming escapes that allow one to feel some connection to others, some internal peace.

 

[Rebecca under the papyrus]

Yes, being physically active was basic for me, too.
Very light yoga helped me to find at least a little pleasure in my body again.
Being outside, and "feeling" the weather is important to me. Doing a walk in the rain or when it's windy, or just sitting somewhere feeling the sun on my face.
Reading national and international newspapers every day makes me feel like I am still embedded in the greater world and take part in it.
And mindfulness, to practise actually noticing even tiny flashes of joy during everyday tasks.

 

[Sledgehammer]

Not having the ability to be as active as I once was was hard to cope with at first but now I just accept it.
I used to walk for miles, canoe, rock climb, swim, pothole, the list was endless.
Now I just feed the brain with mostly computer related stuff like programming when the brain fog allows me.

I do believe your surroundings can play a big part in your mental health so I will go out and try to get away from the noise created around our home. There are many open spaces locally where you can get some respite and they help me cope with this disease.

 

[Treeman]

I have had a spiritual side for sometime that helps me be patient until my health improves.

I have a rigid routine which helps and family including an 11 year old daughter that needs love and support.

I can do some house chores and spread them over the week into about 20 minute chunks a day.

I listen to music a lot of the time.

I read others experiences and try to find something that may help me.

I have a vintage Lambretta scooter and have ridden for around 39 years. I can still usually get a half hour ride a week. I'm moderate and unable to work.

 

[Strawberry]

I have a vintage Lambretta scooter and have ridden for around 39 years. I can still usually get a half hour ride a week. I'm moderate and unable to work.

 

[Strawberry]

Oops The scooter is a great idea. I’m still getting the balls to ride on one. My entire city walks constantly. My walk consists of going to the mailbox or taking the garbage out. I’d love to ride a scooter for a mile “walk.”

 

[Treeman]

Oops The scooter is a great idea. I’m still getting the balls to ride on one. My entire city walks constantly. My walk consists of going to the mailbox or taking the garbage out. I’d love to ride a scooter for a mile “walk.”

That's how I use mine too. I can go to the shops, park outside the door and walk in. Much easier than using public transport and uses much less energy. Also, in and out of the traffic so the journey time is shorter saves more energy.

 

[nina22]

In my professional life I always had to read serious technical books 🙄 So my treat is I read anything I want now- graphic novels, poetry, Obscure sciences, crafting books and all the classics that I never had time to read. My librarian is always excited to see what randomness I order next. I take a long time to read something but hey, time I have🤷‍♀

And I crochet and sew. It makes me dizzy but a little at a time. It calms my nerves, and I guess, if I can make a thing that wasn’t there before, then I feel a little more powerful, like I can still be useful. Plus I get more cuddly bed clothes out of it 👍

 

[Howard]

Great subject!

Prior to becoming ill, I didn't have much use for other people.. the exceptions being my son and wife. I've always had the ability to entertain myself and keep busy with my own projects.

After becoming rather unwell, my human interactions dropped off precipitously. Initially, in the first couple of years, this wasn't a problem. But not having much else to do (nor being able to tolerate any external stimuli), I began working on myself, making myself into a more well-rounded more emotionally available human being. And with these emotions, came the need to share with other human beings. And that's when the loneliness set in.

As I've evolved, I now find much of my joy relating and interacting with other people.. strangers, mostly. This primarily includes doctors, nurses, hospital personnel, caregivers.. etcetera. But I truly enjoy learning how it is that these people operate, how they think and how they feel. And how they see the world. Or determining what it is that inspires or motivates them.

What's funny is that each time I come home from the hospital, I'm on sort of a "high" for the several days that follow. I feel as though I've participated in real life, and real life events.

I'm not sure if anyone can relate to this, my experience, but finding new ways to appreciate humans has been beneficial for me. Much of my life has been spent excluding others, or isolating, but now I seem to be more inclusive.

Additionally..

I also experience joy after having helped others, surviving a difficult experience, or especially after having composed a new song.

When I am detached (not engaged intuitively), I experience little joy. Anything I am doing, or whatever it is that's occupying my time, will not add meaning to my life.