The weight of living with chronic illness is getting to me again. Could use some empathy from others who understand and won’t pressure me to explain what’s going on (a dozen small triggers maybe), turn it into their problems, or tell me it will get better or the worst, “Stay strong.”

We’ve all been here so here’s a place where we can sit with each other.

  •  elfpie   ( @elfpie@beehaw.org ) 
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    511 months ago

    Can I vent a little in your behalf? I’m in a good place now, so it won’t sip my energy.

    I would put the variation “you’re strong” together with the other wannabe advices. They don’t help anyone. If you are having a bad day, or specially bad bad day, you need to act accordingly. People should learn how to give your space to be down and not try to yank you out of it the moment you stop pushing.

    •  emma   ( @emma@beehaw.org ) OP
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      411 months ago

      Yes, I don’t need to be strong. I need people around who will help in the ways I need, rather than their ways they need to give, so I can be weak and rest for a bit.

      Glad you’re in a good place. Those are precious <3

  • When I’m really struggling it’s annoying to have people call me strong or resilient. I mean technically I am strong but it feels like a curse. I don’t want to be strong. I want it to be easier.

    The worst one, though, THE WORST, is when they say “I don’t know how you do it/live like this.”

    Uuuuhhhh, if I had a choice I wouldn’t. I wouldn’t do it. I have no choice. The only way out is through.

  • I’m in the same club. Have been having a rough patch recently but spend today watching a funny movie and learning a little which made me feel a bit more positive. How is your day going? Anything interesting going on?

    •  emma   ( @emma@beehaw.org ) OP
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      311 months ago

      Been out of sorts, which is probably more physical affecting emotions than emotions affecting physical. Have been rewatching a favourite comedy drama but am getting more caught up in the drama than the funny parts. Interesting how differently I’m reacting to it this time through. Started a new one that’s currently airing so I can participate in online conversations. Hopefully I’ll get on with it.

      • I read some reasearch recently that talked about how emotions are strongly interrelated with physical state unlike thoughts, which helped me make a little bit more sense of what is going on.

        What are you watching right now? I struggle with Friends/Community/The Good Place for the same reason. I like the parts where they just have fun and do interesting things but then everything gets mixed in with interpersonal drama that makes me feel uncomfortable.

        If it’s your cup of tea, there’s a TV series called ‘Clarkson’s Farm’ about Jeremy Clarkson trying to run his farm which I found to be touching and soothing in a way :)

        •  emma   ( @emma@beehaw.org ) OP
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          311 months ago

          Not going to tell you what I think of Clarkson then :)

          I gave up on UK & European telly awhile back. Got into Asian drama earlier this year. They tend to go deep with all emotions, highs and lows. Different set of cliches and conventions too. I’m rewatching a Chinese screwball comedy called The Romance of Tiger and Rose, where a young screenwriter gets stuck in the story and historical world she’s created but things don’t go to plan and, like all good screwball comedies, she talks her way into and out of much mayhem. Gender roles are reversed in the city she’s made up and that’s used well for social commentary. The new one is from So Korea, the title is translated into English as “King The Land.” I don’t know much about it.

          I studied and practiced Buddhism when I was younger and through that learned how to identify when emotions were real emotions and when the feelings were physical. If I was feeling low and assigned reasons to it, it would last longer than if I recognised it as primarily physical. “Not putting content into it” is the phrase I used. With middle age though, no real support, a life of chronic illness, and how. much. is going on in the world these days, there’s a lot of content.

          • I don’t think Clarkson is a great guy and you couldn’t pay me to watch Top Gear or whatever else he hosts 🤷🏾‍♂️ but I liked this show mostly.

            That sounds really cool :) Especially the first one, though I struggle with watching awkward situations on TV. I’ve been recently watching The Signal (one of the best TV shows I’ve seen across all languages) and Extraordinary Attorney Woo because the protagonist is autistic like me :) I have been struggling with EAW though because how much of drama it has.

            That’s a really interesting way of looking at it 🤔 I sort of work at the other end of the spectrum where if I can find reasons, then I can try to fix stuff but I struggle with feelings that I can’t resolve reasons for at a basic level. I have been practicing mindfulness for a while and it has helped me in this regard by focusing on little things that matter, though the world is burning 😅

            •  emma   ( @emma@beehaw.org ) OP
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              211 months ago

              Hello again 🙂

              I’ve watched EAW since you had mentioned it. Did you finish it? I also struggled to get through a lot of episodes, especially the shouty courtroom bits and the speed and pitch of WYW’s voice when she was info dumping or agitated. The lead actress did an amazing job of inhabiting the character. It was just hard for me cause of my own broken neurologicals.

              When you wrote “how much drama it has”, could it have been related to that sort of thing? I’m not autistic but there can be similarities in things like sensory overload.

              • Hello 😄

                I couldn’t finish it. I usually can’t deal with watching awkward situations or emotional drama on screen because I feel like I’m experiencing what the charector is. In case of EAW it was even worse because I could relate to her even more. I gave up when

                spoiler

                she tried to hang herself to see if the defendant could have done it.

                I suppose it hits too close to home, as you said. Like the revolving door scene 😅

                The other part is this hyper empathy I have because of ASD.

                •  emma   ( @emma@beehaw.org ) OP
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                  111 months ago

                  ok, i understand more about how it is with you now. The hyper empathy must make watching most things difficult.

                  I’ve been watching a short 8 hour Thai drama about gay men, relationships and letting go. It’s beautifully done, simple and very real. Only have an hour left and I’m rationing it out so I don’t finish too quickly. Don’t know if it would be ok for you, the awkward bits don’t last too long and the characters support each other through it all. Moonlight Chicken, on youtube.

            •  emma   ( @emma@beehaw.org ) OP
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              211 months ago

              Tiger and Rose is mostly awkward situations. Countless twists and turns but everything comes out of something before. I haven’t seen EAW yet.

              Just feel the feelings then.

  •  StringTheory   ( @StringTheory@beehaw.org ) 
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    11 months ago

    Yup. It sucks.

    Haul out your guitar and play a little. If you aren’t up for playing, just tune it. There are plenty of days where all I do is tune, which can be pretty satisfying in and of itself. Accomplishment!

    (I really dig your “E minor” chord - awesome bit of punning)

    •  emma   ( @emma@beehaw.org ) OP
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      511 months ago

      My guitars were part of another life. I had to give up playing in order to continue working and even now I struggle with hand pain and that sort of fine motor control. But thanks for the compliment on my visual pun.

  •  Rin   ( @DreamyRin@beehaw.org ) 
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    311 months ago

    I’m here, and I both relate and hear you.

    lately I’ve taken to trying to get sun. I can’t handle the over-stimulation of my house with my light on, so I turn it off and open a window instead. it’s really helped me, even though it’s a small thing. my desk is by my window, so that probably contributes.

    I’ve been trying to work on taking walks too. I have four dogs (not by choice, although I love them all, my situation means that my two dogs are now living with two others) in the house, so sometimes they come with me, but I try to spend some time alone. occasionally I listen to podcasts but mostly music. I tend to avoid my thoughts via escapism, which I indulge a little too much in, admittedly. but it’s a coping skill I’ve always had and am not willing to give up.

    I guess my point is I wanted to share, not to brag, but to show that taking small steps (sorry for the pun), for me, has helped. it’s not always going to help, and I can’t always try, but right now things are okay and I’m going to take that. it’s also been helping me to use a therapy skill, basically just naming one good thing that happened that day. if you can share it with someone, even better.

    what have you done to cope in the past? if you don’t mind me asking. I’m sorry if this comes off as too much.

    •  emma   ( @emma@beehaw.org ) OP
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      411 months ago

      30+ years into coping with these things, my most effective and main strategies are good sleep practices; nutritional (making sure I eat regularly and healthily, supplements because my body doesn’t process enough from food, and minimizing things like sugar and caffeine); trying to minimize stresses (some are easy, like caffeine, others not, like the state of world and society); and recognising when i need radical rest. As in really not doing much of anything, which is boring AF.

      •  Rin   ( @DreamyRin@beehaw.org ) 
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        311 months ago

        ayyy 30+ year old club.

        I’ve started to get better about eating things that are better for me, but it’s been a struggle due to texture issues. and I definitely relate on minimizing stress being easier in some cases and harder in others.

        I have a really hard time with radical rest (that’s the first time I’ve seen it called that, too) both because it’s boring and because I feel like I have to keep doing something (anything) to feel like my day was productive. it clashes a lot with the times I can’t get myself to function.