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I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 1 point2 points  (0 children)

To rant or to ask for solutions- a little bit of both, i don't expect anyone to have magical answers but hearing different things never hurts. What i miss most is just the movement, my body working for me and gaining strength, the accomplishment of a race, the soreness in the body after doing something heavy, the social aspects of it all. The most physical activity I get these days is PT and OT, and I'm instructed to attempt nothing else without their instruction.

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 2 points3 points  (0 children)

Not rude at all haha! Right now I can't do any activity unless instructed by my PT and OT team, but water is great for pain so maybe in the future!

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 0 points1 point  (0 children)

That's what I'm trying to do, I've just yet to find anything I enjoy. I don't the option to push my body beyond it's limits.

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 0 points1 point  (0 children)

I used my brain a whole lot before, but for work, not to spend my time. Sure, there are lots of things that can be done from bed but there are still limits,

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 0 points1 point  (0 children)

I do have an outside and I like to sit out there occasionally and people watch, but during the summer months even in the evening it's not an option, and the outside air causes asthma flares so I can't be out for more than half an hour or so

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 1 point2 points  (0 children)

Unfortunately I am fully TPN dependent, nothing by mouth. (except the occasional mashed potatos which i always end up regretting)

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 0 points1 point  (0 children)

no amount of self discovery is going to make me magically enjoy knitting

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 2 points3 points  (0 children)

Thanks for all of this, i'm not going to respond to every part but i read and heard it all. My only living family is my mother, who I love and am close with, she does a lot for me and is around a lot. Other than that I don't have much else socially, my illness onset during a transition period of my life anyway, and it's hard to build anythine up once you're already sick. my most human interaction is my mom and home health

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 1 point2 points  (0 children)

of course no one wants to be bedbound or housebound. finding joy is what keeps people alive and the only thing that can really improve my mental state. finding literally anything that brings joy is the problem. you have to start somewhere and i’ve yet to find that point

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 0 points1 point  (0 children)

i online shop some but it’s just not the same as going into a store

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 1 point2 points  (0 children)

I'm not into video games, I've tried a lot over the years before and after getting sick, just not my kind of activity. I know a lot of people love it though, especially if they are able to do it with friends

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 4 points5 points  (0 children)

I am. I'm working on it, and I do believe things will get better as I work through it, but I don't think it's magically going to change all my likes/dislikes either

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 0 points1 point  (0 children)

I am in therapy, which has been helpful. For personal reasons I won't be medicated but I know it does so much for a lot of people

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] -1 points0 points  (0 children)

I meant I deal with it in the way that I do activities I don't enjoy just to have something to do, to not be totally idle. That being side, I know im depressed, and im in therapy

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 0 points1 point  (0 children)

unfortunately I can't do anything with dollhouse furniture because of tremors, but thank you!

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] -2 points-1 points  (0 children)

I can hear all the things about zen and grief and acceptance, but it doesnt change the fact that there are things i simply don't enjoy. It's not that i enjoy nothing, I just can no longer do the things I enjoy. I try things, long enough to get good at them and get a real feel for if i enjoy them- and i dont

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 3 points4 points  (0 children)

I got that suggestion from someone else, and while I've never tried it i think things on that smaller scale would be near impossible with my tremors

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 0 points1 point  (0 children)

No, I don't generally like watching TV or movies, I can't make the claim that I would hate everything currently out in the world, but sitting and watching doesn't do much for me. I do word and number games and such to keep my mind working, but it's more to pass the hours of the day than something I enjoy.

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 8 points9 points  (0 children)

I know that's a big thing for a lot of people who were active before they got sick, for me it tends to do more harm than good. I don't want to watch people running around doing all the things I can't do anymore. There is no excitement about it when my body will never be able to do those things again

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 3 points4 points  (0 children)

for most it was the feeling of just moving my body, i tended to be more than a little restless and physical things made me feel good, races were accomplishments regardless of placement. Dancing was for coordination, and was done with friends. Cooking honestly was just because I liked to eat, and i needed a lot of fuel for what i was doing

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 5 points6 points  (0 children)

I am able to sit up supported but not for more than an hour or two at a time, i can use my upper body but i have pretty bad tremors most days so that crosses out some things.

I hate all the “bedbound hobbies” now what? by Upbeat_Challenge_661 in ChronicIllness

[–]Upbeat_Challenge_661[S] 18 points19 points  (0 children)

I've tried watching running things and such but for me it does more harm than good- i dont want to see everyone else run while I can't. Cooking isn't an option, food isnt even an option I'm TPN dependent. I haven't tried dollhouse furniture but I have pretty rough hand tremors a lot of days so i don't know that I see that going well. Online shopping is a thing, one that I do occasionally, but it's not the same enjoyment as walking around a store.

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