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keep on keeping on

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Re: keep on keeping on

Postby birdsong87 » Sun Sep 06, 2020 6:39 pm

we tried a couple of things during our vacation.

we learned that routines aren't always the best thing. especially not during a pandemic, but generally, in our disabled life. some routine is good. but if everyday looks the same because it is built out of the same blocks of routines, it is hard to tell days apart. every day needs something that is beyond the routine. a small project. we made fancy lemonade (with sugared lemon peel and the whole thing), made our own peach syrup for ice tea, little projects like that, savored, make up a big part of what feels like proper self-care and like there is something special. it doesn't need to be big.

one of the best things we can do for self-care is shut the laptop and be offline. it creates time to get a bit bored. time without distraction. we distract ourselves so so much all the time that we never get in touch with our needs at all. it shouldn't be big and terrible boredom. just a chance for us to connect with ourselves. that is when we need to use our 'follow-the-impuls'-tool. when we are not distracted or numbed, we can figure out what we might need in this special moment. when we do it and then mindfully notice how that makes us feel, that is helpful.

and we started this thing where we write in the journal in the evening, not every evening but when we manage. we ask: what about today was good? everyone who wants to can share.
then we ask: what was not so good? and everyone can share.
finally we ask: what could we do better tomorrow? the next day we wake up with something of a plan what to focus on to make the day better.
it doesn't work with pressure or blame or accusations. but it does work well when we do it together as a team that wants to learn how to improve things for all of us. no shame or guilt, just learning.

then we also started to work out again. we stopped when the pain of the fibromyalgia got more, but not working out is no solution for that. it hurts just as bad if we do nothing. we have tried to go back to working out several times before but gave up quickly. this time it worked. we are doing 3x30min a week of mixed training. key was to focus on what we enjoy, try it and see how much of it we can still do with our disabled body. the last few times we tried things that we thought we could do, but we were dead wrong with our guesses! we thought pilates would be good, no jumping, quiet movements. turns out, pilates is one of the few things we absolutely cannot do. no wonder that didn't work!! starting with what we like and accepting the limitations was a lot better approach. what we now do is working with the body instead of working against it. we do have to limit ourselves, not everything we like is possible (yet), some might not be possible ever again, but we are working out regularly and it makes us feel good. so we won back a valuable resource while also honoring our limitations.

that's the stuff that stands out the most.
Dx: DID cPTSD
L (host 1); Asti (host 2); Annett (teen protector); Maya (child); Age (observer); Thamara (child); Danielle (aut. teen); Mike (caregiver) and others
Our blog on resources https://www.dis-sos.com
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Re: keep on keeping on

Postby TheGangsAllHere » Sun Sep 06, 2020 8:39 pm

That all sounds very positive. I'd write more, but we're having a rough time right now. Wishing you the best.
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Re: keep on keeping on

Postby MakersDozn » Mon Sep 07, 2020 10:46 pm

Yes, lots of positives, L. We're happy for you.

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Re: keep on keeping on

Postby birdsong87 » Wed Sep 09, 2020 1:25 pm

thanks friends. not all of the vacation was positive though.

*****trigger warning***** loss, suicide, grief

2 weeks ago today a close friend ended his life. he drowned himself in a lake near the place where he lived most of his life. He was part of our book club.
it was a tough time, waiting for news. then getting more information slowly over many days.
he sent us a short message, saying he enjoyed the past months. we met every week to read and discuss. he said he loves us. and that was all.
we've been trying to support his wife, the book club and L who was hit hard by this. we have known him for 15 years, almost half of our life and he has been supportive during years that were very confusing to us, encouraging when we still lived with the mother, he fixed our stove a couple of years ago and led a small group in church. he was smart, extremely loyal and funny.
he was also an adopted child, his biological father a narcissist, was married to a woman who is a clearcut narcissist and after he divorced her he worked for his father... decades of narcissistic abuse he kept stumbling into. deep patterns of shame.
this is the first time we see someone die from chronic shame.
he couldn't live with himself anymore, with his constant feelings of being a failure.
it was like he had this boy inside himself who had given up on pleasing his parents. he wrote in a letter he left behind that he hopes he has enough courage to end his life this time. it was unbearable
Nobody would have guessed. he hid it all perfectly. we had a small dinner party with the book club only 3 days before. he had been planning it for at least 2 weeks... he took all of us aside, left us some wisdom, a last conversation. nobody would have guessed that he is preparing to leave us forever. there was not sign. his wife had been quarantined for 2 weeks with him because of a covid contact and she didn't see a sign.
he hid his pain too well. he wouldn't let anyone see it, or anyone help. what others thought of him didn't get through. We all miss him. don't know how to continue with the book club. try to think of ways to support the widow.

When we first talked to the T, an emercency appointment, L was beside herself, weeping all the way through. we rarely show emotion like that. A lot of talk was about me. and how I don't manage grief, how I shut down the others when they show strong emotions and how that leads to more physical pain.
I talked to the T myself, trying to describe that all I have is anger, or a flight/fight response. she said a lot of things I didn't understand. about samurai. she said it before but I still don't get it. I think it was about being embodied. she also said that learning to not just feel emotions but also express them, with both words and body, gives us more choices for how to respond in a situation. I only use words. I don't know what to do with the body. when I am in it it usually looks limb while the muscles are really super tense in that position.
we tried to figure things out but I don't get it. all I could agree to is try not to shut the others emotions down. or maybe a little less than usual. it is important for L to mourn this loss.
our therapy homework was asking everyone in the system who wanted to join how they feel and express certain feelings. the results are incredibly interesting. Maya is certainly the best in expressing things. she is also an extrovert while Thamara knows feeling but is a strong introvert.
I tend to show the opposite of a natural response. I go into hyperarousal when sad or freeze when happy.
not sure where this exercise will lead us. the funeral is in 2 weeks.
Dx: DID cPTSD
L (host 1); Asti (host 2); Annett (teen protector); Maya (child); Age (observer); Thamara (child); Danielle (aut. teen); Mike (caregiver) and others
Our blog on resources https://www.dis-sos.com
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Re: keep on keeping on

Postby TheGangsAllHere » Wed Sep 09, 2020 3:30 pm

How sad, and scary. Especially that those feelings were so completely isolated and hidden from everyone around him. And that he had a level of hopelessness that precluded any kind of reaching out.

I'm so sorry for your loss.
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Re: keep on keeping on

Postby spinningtops » Thu Sep 10, 2020 8:16 am

i'm very sorry this happened. one thing is that i think when people are suicidal, yeah sometimes they don't show it. it is very hard. he sounds like he was very close and important in your life. :( take care.
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Re: keep on keeping on

Postby MakersDozn » Thu Sep 10, 2020 10:38 pm

We're so sorry, Asti and all.

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Multiple self-dxed 1996. Body 58f. System of 47: 42 ♀, 5 ♂; 17 littles (7+under), 9 middles (8-11), 14 teens (12-17+), 5 bigs (18+up), + a formless yin/yang. Oldest member is 25.

Notable: Charity 25, Deborah 23, Drew 23f, Mary 23, Rachel 23, Laura 17.5, Allegra 17, Cass 17, shawn 16f.
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Re: keep on keeping on

Postby birdsong87 » Fri Sep 18, 2020 6:34 pm

L is trying to learn this grief thing. she writes letters. and cries a lot.
I work on being more in the body and expressing emotions with the body. it sucks big time.
there is a disconection there that seems impossible to bridge. we looked at it a lot and it is not depersonalization. it's more like I don't fully front. just enough so that I can use the body and get stuff done, but not fully in the body.
I feel like none of the healthy people I tell this get it.
the T told me to do more mindful observations, but observe from very close by instead of far away and it is still the same. it feels like what I observe is about 3 inches further to the front than it really is. or I am further in the back... I sense the things, but with a huge disconnection between the head that feels like me and everything else that does not. no amount of mindfulness gets more properly into the body. But we lack other ideas too.

the grief changes our pain perception. We struggle a lot and our pain meds are not sufficiant more and more often. the funeral is next week.
Dx: DID cPTSD
L (host 1); Asti (host 2); Annett (teen protector); Maya (child); Age (observer); Thamara (child); Danielle (aut. teen); Mike (caregiver) and others
Our blog on resources https://www.dis-sos.com
birdsong87
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Re: keep on keeping on

Postby ArbreMonde » Sat Sep 19, 2020 6:53 am

Dissociation maybe? The feeling of piloting the body from afar is called like that.

It is my number one speciality...

--Zami--
Multiple system Dx autistic, depression, c-PTSD...

Going through a reconfiguration process. Present host: oOo van H. oOo (he/him)

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Re: keep on keeping on

Postby birdsong87 » Sat Sep 19, 2020 8:45 pm

oh really? dissociation - who would have thought of that
Dx: DID cPTSD
L (host 1); Asti (host 2); Annett (teen protector); Maya (child); Age (observer); Thamara (child); Danielle (aut. teen); Mike (caregiver) and others
Our blog on resources https://www.dis-sos.com
birdsong87
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Posts: 3844
Joined: Mon Mar 23, 2015 10:20 am
Local time: Tue Oct 27, 2020 2:13 am
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