edited to add -- I was typing while Catra posted -- but I think we said nearly the same thing.... just a little different way.
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Absolutely I understand... I've had this so long now, though, it is just the way it is. I miss being creative - being able to play the hammer dulcimer, do paintings, garden, cook great food (with lots of preparation)... And doing things with friends. My friends don't come around much any more either. Most I have not talked to in years. Then, a few won't give up on me.
Can't hold a book for long so even reading is hard. Comprehension is bad anyway. I've tried my best to be thankful that I DID do those things. Many people never do anything that they want to do - and "back then" I used to try a lot of new things. I never did much traveling because I could not afford it - and now won't be able to because of RSD. I've found some Pinterest Boards of people who post wonderful photos and when things are really bad and painful, I spend a couple hours looking at beautiful scenery, flowers etc. My elderly Mom will be 88 soon, and lives with me. Her memory is starting to fail pretty fast. Even if I could get out more to go somewhere overnight - I can't now because of her. So -- yes, I sure do miss the life I used to have.
I think the thing is, you've got to try to concentrate on what you CAN do and learning to get enjoyment out of that. I can't hold a book and I loved to read. So, I saved up and bought a lower end Nook - I can hold that! And, I can make the type big when my eyes are blurry. I get e-magazines and e-books from my local library. They can be downloaded from home, even at 3 a.m. I always liked big, long books.. but find that short stories or essays take less concentration and work better for me when my pain is up. My Nook is black and white, so I do get the e-magazines on my computer so I can see the color photos.
I can't make complicated big meals and have people in like I used to - so now I try to make simple, easy to fix food for Mom and I - but I still try to make it good. That satisfies my "cooking" creativity. Swapping out a flavored salad dressing, like Bacon Tomato for Mayo on a turkey sandwich. Small stuff, but .... keeps my mind going and engaged.
I get a great deal of companionship and joy from my service dog. She goes nearly everywhere I go, so we are pretty close. She gives me a reason to get up, get going each day. To try to force myself to go for walks - because she needs them. I need them too - but I wasn't doing it for me - but I'll drag myself around at least a little bit for her - or, if nothing else, I'll stand in the yard while she goes around sniffing and throw a toy for her.
I used to be a very avid gardener - I had one perennial bed alone that was 120 x 40 feet... plus thousands of different daylilies I was breeding and selling. I was a daylily judge and went around to people's gardens looking at the flowers that were up for national awards. I cannot do that anymore. So, now I moderate a daylily forum on a huge website that covers all kinds of plants. I answer new people's questions, organize online events, etc. I have dictation software, which makes it pretty easy to do. Does not need attention every day, and can be done at any hour, and takes just a couple hours a week if I am not feeling up to it - or a few hours a day if I am... those days I start new thread, make up games, write articles for the forum.
Now I have a very small garden 30x15 feet - of my very favorite flowers, that a friend helps me maintain. Just enough I can putter a bit when I am up to it, and cut some blooms to enjoy indoors. My friend does all the physical stuff. I do hire her since she does it for a living and I don't feel I am as much of a burden that way.
I recently got an aquarium and started an "aquascape" tank - lots of plants, some fish - it's feeding my need to grow things, fun, pretty, relaxing.... all in a space 12" x 12" x 24". I put it where I can easily see it from my bed, since I spend a lot of time there.
Yep, it's tough when it's time to clean it - but I can do it. It doesn't need much, since it has so many plants. I rest before I do it, and I rest after, because it HURTS... but the other days - man it is so great to lay in bed and look over at that beautiful tank and watch the fish for a couple hours... it is almost like meditation for me. Especially on bad days.
Sit down and think about all the things you have done and enjoyed, and try to think of how you can re-invent them to do them now. Make a list of things you always wanted to do or try - and see if you can figure out a way to do it. I bet you can come up with a few things.
RSD can affect the brain - concentration, memory, etc. - and the more you keep your brain involved and engaged the better off you will be. Even if it is just doing Sudoku puzzles.
