Lived Experience Forum

[maddison]

Thankyou @hanami 

Word from the top is, "We're looking into it." (Re: changing CW's)

😕

I appreciate your support👍

[EternalFlower]

Hi @maddison that sounds nerve wrecking, given track record of cm. I read that they're looking into changing....yay, that would be amazing.

I have found cm that I have is not suited to this position at all, she's very dishonest as well. I feel sad I have her as a cm. I feel sad all around.

Our brains sure are funny 

[hanami]

Hey @EternalFlower 

I'm so sorry you're feeling sad about your CM. Are you able to request a new one? I think it's important you have a someone that you have a good connection with. 

Sending hugs

hanami 💮

[maddison]

Hey @EternalFlower 

Thankyou for reply🙂 & your support. Yes, you are right - my housemate dreads going to see his current one. He gets quite agitated in the morning before having to see her. It can be a lot for me to deal with.

I don't always attend appts. With him. Usually, it had been maybe 1 every few months. In the past, I think it had made him feel safer to keep his medical life vs. Home life seperate. He feels disempowered & untrusting/paranoid, & having a 'team' of personal/professionals, collaborating to support him, I think makes him feel very outnumbered. I totally respect how he wants to manage his own healthcare. I did have access to his previous cm via text, so was able to provide any urgent updates which was helpful.

I was slightly surprised today, he actually requested me to go with him. Of course I did. I feel bad for you & him & the impact  that the nurses are having on you both. I think it must be difficult to explain to other people, I can see how deeply it is affecting him though.

I have asked his Mum to take over talking with health clinic staff re changing cw. I feel like I have enough to focus on. I think she seems to making progress. Sometimes she can be unreliable though.

I wonder if you would feel comfortable asking your psychiatrist what their thoughts were on advocating new cm for you?

I'm sad to hear that you are sad today. Thankyou for having strength & resilience to talk on here🙂💜 

Our brains sure are strange, funny things🧠 . Are you still having kind of bad thoughts?

💗💕💗💕

[maddison]

Hope you are ok @EternalFlower 

I'm sad to know your cw is being dishonest with you. That must be upsetting & difficult to process. You can get through this👍🙂

I was asking my housemate if he could explain what sought of things help him when he experiences intrusive thoughts. Here is what he said;

• Fresh air. Fresh air helps a lot. Probably the most. (He sometimes sits outside for 20 mins, or if he feels like it, walks into town)
• A really good cup of tea. Tea helps more than any other drink.
• Zoning out & falling asleep.
• Slogans. 

He said he will repeat slogans over & over in his head. The one he has been using recently is "GOOD CLEAN HOSPITAL"

It sounds strange! He said that was something he believed in, and that is important to him.

I can appreciate his logic & I admire his intelligence to find focus in that way. I feel privileged that he trusts me enough to let his guard down and share it with me. He also gave me permission to share it here💙

[EternalFlower]

Hi @maddison @hanami @TAB @Paperdaisy @Appleblossom 

Im glad to see u here and Ur presence means a lot!

I have asked to change but I have changed once already, so they would try spin that I am the problem.

I do regret changing the first time. The cm was inexperienced in her early 20s and didn't really understand me, but she was nice and eager. 

This is worse.

[Appleblossom]

@EternalFlower 

Sometimes the emotional learning is the take away point.  Like next time, you might be more patient with inexperience but keen.  With this one, maybe its about respecting your internal space and keeping that boundary apart so that she has less impact on your inner life. My son has low expectations.  In a way it is sad, but he does not get as hurt.

His cm told me he was going to advocate for my son, but in the meeting barely made a peep, so, thats the score there.

Keep your eye open for other things that resonate more with you. 

Not sure if you have any orders that keep you at that clinic or with that cm. 

Its a valid learning.  Not all people are safe.  If they will not change now, first priority is to protect self ... somehow 'put up with' ... protect self ... til better comes along.

[Rhye]

Morning @maddison, thank you to you and your flatmate for sharing what works for him when it comes to intrusive thoughts. As someone who has lived with more than my fair share of intrusive thoughts, the idea of using "slogans" doesn't sound strange at all 😊

Reminding ourself of our values, our direction and facts, then packaging those into bite sized slogans, is an excellent one. I think it's something I've kinda done myself without formalising it as such, but I'm so glad to hear someone package it in that way. 

Again, thank you for the share @maddison. It's super helpful 😊

[EternalFlower]

Hi @maddison how are u doing, and sorry for the slow response

I am still feeling icky,

I did a dbt class today at the hospital, it was super interesting in theory but I don't know if it's helpful for me. The class was full of nice and warm ppl, and the teacher was pretty good.

That is so nice what Ur housemate has shared it seems like simple things are best.

I like the idea of slogans

It is a positive step to even use positive words

[hanami]

Hi @maddison 

Those tips your housemate shared are great! It’s a privilege for sure that he’s comfortable enough to share them with you ❤️

hanami 🌸