Advice on sleep deprivation

[maddison]

@tyme @Former-Member @Paperdaisy I forgot to mention. - I wrote in the 'brainstorming ideas' section of my document about having a peerworker that could be available to my friend. Maybe they could attend things like GP appointments, or go grocery shopping with him etc 

I am unaware if this is a even a possibility. I was wondering if you knew about any programs or if you are able to offer any information you may have?

I completely understand if unable to offer advice. It is hugely complex situation. I always appreciate your ongoing support. Thankyou. 

[maddison]

Quick update: had a brief chat with my friend. Ironically, he is coping emotionally much better than I am with everything. He offered me lots of support & made me feel happier. I told him how I was ignored by his cm today & was laying here ruminating. He replied that she is someone who doesn't feel comfortable getting close to people & that he gets the same vibe. I thought that was such a lovely, non-critical way of describing her. I asked him if he was happy, comfortable with her as his CM. He said that he thinks he has an awareness of all the cm available at the clinic, & that he believes she is the best one. He is happy that she's is his cm. He then began discussing various 'free mason' interventions that resulted in his position that I cannot begin to explain here. That's ok. That is normal for him. He has his own interpretation of reality - we tend to meet somewhere in the middle!

[Former-Member]

heya @maddison, it does seem like serendipity! Apologies for not replying last night. My cup was running on empty but I'm feeling better today ❤️ 

Thank you for all the updates ❤️ You and your friends friendship sounds wonderful! 

Firstly, sounds like not a great response from the CM and it's understandable it's left you deflated. In my experience, it's possible that you're the first person to ever create a document like this for someone. And it could be seen as a subtle challenge to her own position of "expert". I heard something in a podcast today which said something like "medical and MH professionals are people that we hire for their advice and expertise. We should respect their advice, but we are also part of our own care team and our experience and knowledge also needs to be considered". I never really thought of it that way. But this CM probably hasn't learnt to include other views. But there is a possibility that it will just take them time to be open to this. Do you think she understands that you worked with your friend on the document and ideas too? 

Secondly, it's so great to hear that you still have hope! I agree, the CM reaction demonstrates all the more need interventions like this (re: the idea above). Like you said, your friend feels really understood and cared for. Plus, these things take time. You probably don't know this, but I used to work in climate and social justice campaigning. As you can imagine, there were a lot of setbacks. Like a DECADE of setbacks, and it always feels like you're losing. But slowly, surely, there was change. And the people involved in the work I was doing felt empowered, learned new skills, felt heard. What I'm saying is, this sounds like it's the start to your advocacy journey. And hope is important because it means we can keep going with the small change while we wait for the big change ❤️ Being an idealist can be hard, so tempering it with some realism is ok. When I was involved in advocacy, I just tried to act in line with my values. And as long as I did that, being disappointed felt a little more ok ❤️ 

Re: a peer worker. I don't know heaps about this! I feel like some people who get NDIS have this included in their package. But I'm sorry, I don't have much info ❤️ 


Please take care and rest up! When you're ready, I think this would be an awesome story to include in the carers advocacy post, but no rush or pressure ❤️ 

[maddison]

Hi @Former-Member I appreciate your response so much. Thankyou. It has been really hard & today their have been more developments.

I appreciate your very kind apology in delayed ( I didn't think it was delayed! 😊)response & I feel exactly the same when replying to members. Such a great description that your cup was empty. I know the feeling! I hope you have it filled, & maybe spilling over now! ❤️ It's a good point that we need to be more mindful of filling before empty - not always possible - I think I could improve on it. I am also trying to be more mindful not to apologise to members❤️💜❤️

I feel like my story is particularly complex & heavy. I completely understand that it might be too much for other people to always share it with me. 

I'm not sure if I'm imagining things, but this time, I feel like I'm approaching things from a new angle. Rather than trying to mould myself into the 'carer' role, I perceive others expect me to be - I'm asking others to see my role as a carer, the way I want it to be. The way I feel like I can best offer & expand my gifts. Afterall, it is pretty much me doing everything!

What I'm trying to say - is that, I feel like things are unusually hectic & extreme right now - however, if I can endure this now - then ultimately my future will be calmer. I think in other crisis times, it was about containing, whereas this time I feel like I have a definite goal. Unfortunately, this seems to be creating a more intense situation - I'm looking at it like one big hump day! Hopefully, I'm not deluding myself!

Update 

After text and phonecall with CM this morning I am advocating for him to have hospital stay to re-establish healthy patterns 

His CM is pushing for him to stay at PARC's.

He wants to go to hospital.

Her response was that his sleep & diet issues would "be a hard sell " in getting him admitted to hospital.

She is going to to discuss with psych & get back to me tomorrow.

This is the first time in 20 years of knowing him, that he has ever displayed insight into his own health & behaviour. His mum & I are both completely surprised & happy to see this new development.

[maddison]

@Former-Member something I've learned about myself in the few days is that I hate being an advocate!! 😄 Not really - I live for making this world better - it's just so hard. My goodness, it's so much easier to sit back& do nothing.

His CM really irks me. I just got off the phone to her. Perhaps everything she is suggesting, is accurate re: PARCs, yet the tone of her voice felt so condescending.

Yes, I think you could be right right that I have challenged her "expert". 

medical and MH professionals are people that we hire for their advice and expertise. We should respect their advice, but we are also part of our own care team and our experience and knowledge also needs to be considered 

Yes, I love this & agree. It is exactly the motivation I need at the moment to keep going. It is so easy to lose myself. Thankyou. It is interesting that you mention that professionals are probably not educated to include this in their thinking. I think& hope, that given time, things can become a little easier in that regard. Right now, things feel very fresh, as though there has not been enough time for opposing sides to mesh & possibly find balance 

I like reading about your previous work. I am ignorant about it. I think I have small understanding what climate and social justice campaigning is about. I imagine that would be a huge undertaking. I don't know if I could have the strength to take on such a big worldwide battle. It is upsetting to think about our beautiful environment being destroyed, all for money. Seeing smaller, poorer nations pay the price, for what is largely hidden from us in the Western world.

Knowing that you were part of such a huge revolution, makes my advocacy issues feel small in comparison. It definitely gives me strength, to see things from a larger perspective. Maybe I need to not let the details worry me so much. 

But slowly, surely, there was change. And the people involved in the work I was doing felt empowered, learned new skills, felt heard.

You have provided me with a kind of backdrop, in sharing details of previous work. It gives me a 'marker' where I can have more patience & be happy for any change I see.

When I was involved in advocacy, I just tried to act in line with my values. And as long as I did that, being disappointed felt a little more ok

I think I find this part the most truly helpful for me. Passion can get messy!! Who is right & who is wrong - how loud do we have yell etc. Things can escalate quickly when fighting for something we care about. Feelings of injustice can make us act out.

I am not someone who often feels anger. Sadness, is usually my 'go to' reaction when feeling unheard or alone. Last night & today, I feel an unusual sense of anger. I don't like to be spoken down to by his CM. I'm getting angry again writing about it!!😄

"Acting in line with my values" is excellent advice. It makes me feel calmer instantly❤️

Thankyou @Former-Member 

P.S - please only respond if you want. You're support has been wonderful👍 thankyou x

[maddison]

I think I saw definite progress today. 

Very small & very big depending on perspective. (I choose big😊)

My next challenge is maintaining momentum.

Thankyou so much for supporting me... Thankyou.

xx❤️xx

[Former-Member]

@maddison YAY! Some change! 

I'm so glad this has been helpful for you! It's tough, and no matter how "big" or how "small" the advocacy is, it's always important because it can change lives. And what you've done is changing the life of someone super close and important to you. And that seems big to me! 

And I really relate to not feeling anger often, but with stuff like this, you feel it. When I feel like there is an injustice, I get so angry! And I haven't ever really felt it in my life. 

You're doing an amazing job ❤️ I hope you get some rest in soon 

[maddison]

Hey @Former-Member your words of support & how you can understand the emotions I'm going through are important to me. 

I am changing his life!! I can see the change in him - moreso than intended targets! He just seems calmer, & more at peace like a weight has finally been lifted. He is notorious for waking up grumpy (I wait 30mins b4 approaching him)

The last few days it's simply vanished. He wakes up calm. I think a greater trust had also been established between us. I am earning his trust! Subsequently, his 'fixed thinking' is magically softened. I'm cautiously noticing his openness to new ideas that is emerging.

Small nuances, that maybe only myself, & his Mum can notice. They are there tho.

This is part of the reason why the next part, in maintaining momentum is so critical. He has trusted me by taking a step forward. I really don't want to let him down.

Things are feeling calmer. I can feel I am 'over stimulated'. I think perhaps by the end of the weekend I will be refreshed & more myself again. I wouldn't say my efforts are recognised - yet - I'm glad I've been noticed.

Thank you 😴

[Former-Member]

Hey @maddison so nice to hear! It sounds like your relationship is only getting stronger! ❤️