- This topic has 2 replies, 2 voices, and was last updated 1 month ago by
Dagmar Munn.
-
AuthorPosts
-
-
May 2, 2023 at 9:09 am #23892
When I went to the ALS clinic, the social worker asked “What gives you joy?”. I thought about it and answered, “my grandchildren “. They do. But now I can’t play with them like I used to .like being outdoors riding bikes , writing on the driveway with chalk, running or walking after the 2 year old. After thinking about it, next time she asks, I would say “nothing”. I used to enjoy cooking and baking. In spring, I enjoyed cleaning up the flowers and shrubs and mulching. I enjoyed having my windows look clean like they weren’t there and not dirty. I liked my house clean. Now I just shake my head. I liked some of my clothes ironed. I miss bumming around all day; maybe stopping at 4-5 places to shop. Bumming around with my friend…Yesterday it took about 5 min. Just to peel a cucumber. Now I wake up and watch tv or use my ipad. It’s hard to depend on someone when you did everything yourself. Yes, I would answer with this ALS nothing gives me joy. Sorry but thanks for allowing me to rant.
-
May 2, 2023 at 4:04 pm #23896
Understand completely and wish I had an answer or ideas for you and me both but I don’t yet but I’m not giving up on possibilities! Mainly I think some type of morning assessment might help just to stimulate my brain into a better sense of living with this stuff (not my usual description)There has to be something more joyful to our days hopefully through these forums we’ll get some answers!
-
May 2, 2023 at 4:47 pm #23901
What helps me find joy are these words…
“Sure ALS is a challenge. You can fight it and try to live life as it once was, or pivot, and learn to live with it.”
-
May 5, 2023 at 8:14 am #23921
I would say my grandchildren bring me great joy. No, I can’t play with them like I used to or read to them, but I can still give hugs, have them in my lap, and watch them play. I used to hike, but now hikes are on paved paths in a wheelchair, but I can still get outside and enjoy nature, trees, flowers, birds, and fresh air. I can still listen to music, attend church in person or online. I can enjoy performances in person or online. Other things that bring joy; reading a good book, gentle stretches, chocolate, phone calls from family and friends, getting cards or sending them. I like to make my husband laugh. I try to find 3 things to be grateful for each day. I think we adapt to the changes and look for things we can still do even if they are small.
-
-
AuthorPosts
- You must be logged in to reply to this topic.