Lived Experience Forum

[hanami]

Hey @maddison 

Are you okay? I just heard on the news that my local area has had loads of covid admissions of late so I'm thinking this will affect home visits etc. It feels neverending doesn't it. 

sending hugs 

hanami 💮

[EternalFlower]

Hi @Appleblossom 

I'm sorry Ur feeling down and it is upsetting when appointments are cancelled with no notice, 

I am sad this has happened to Ur son and hope Ur OK. It is sad.

It is nice to hear from u and @maddison and its nice to have ppl to talk to who I feel are so  on judgemental .

The workers sometimes care so little and yet we sort of blame ourselves, it is very hard and painful

I attended a mh group this morning at hospital which was nice, I think I liked it although bit boring.

Seeing my Dr as well today and having an emergency appointment

My friend has done a lot of advocating for me by calling cm 

Cm is difficult with her too. Endless lists of policies. She said I need to sign a consent form to allow my friends involvement, we are both happy to do so but she can't produce the form

[hanami]

Hey @EternalFlower 

I'm glad you liked the group, if not a little boring! Keep asking for those forms. You're right...endless policy and procedure. It's all to cover themselves but to the people who need support it can seem like gatekeeping. 

sending hugs

hanami 💮

[maddison]

Thanks for reaching out @hanami 

I'm not sure if I'm ok to be honest. I have taken some of my anxiety meds & now I feel sleepy, which I'm annoyed at! I needed it though, so I am ok with side effects.

My housemate is on edge. Not stable. I am able to converse with him on calm level, it is taking more effort than usual though. He was so elevated earlier, that he was literally trembling from distress. I gave him a big hug even though he wasn't  that receptive. I asked him if he felt safer here or in hospital. He paused, and said here. I think we are both open to considering benefits of hospital.

A few days ago, boundary was crossed when he became verbally aggressive with me. It has left me spun out! I feel hyper vigilant. We are in 'holding pattern' at the moment.

Thankyou @hanami 

[hanami]

Oh @maddison I hope things don't escalate. If your housemate becomes verbally aggressive do you have a plan to keep feeling safe? I'm glad you both are open to the benefits of hospital though. 

Keep reaching out

hugs and care

hanami 💮

[maddison]

Hi @EternalFlower 

Thanks for reaching out. It's good to hear from you too.

Earlier I spoke to nurse from triage about making sure that nurse home visits were continued with my housemate during this critical time. 

He spoke over the top of me for the entire conversation. Thankfully, I was able to get my message across & plans are in place for continued  home visits until we can get something else sorted.

I'm kind of astounded at the  (lack of) level of care provided. 

In this moment, I am ok🙂

Well done, attending MH group! I understand that it can be disappointing to not feel fully engaged, or mentally stimulated enough. It's a great first step. 

Painful is the right word in describing how it feels to be neglected, or worse by MH system. On so many levels. 

Last night, I met two beautiful nurses from ITT. They seemed actually interested and made me feel supported. I know that they exist! Can leave us feeling really hopeless & self blame, be as you mentioned when dealing with nurses who do not care properly.

Sounds like you have a beautiful, supportive friend. I'm happy for you that you have this💜 You deserve to feel supported & I'm sure you help her too👍

[maddison]

Thankyou @hanami 

If it happens again, I will have no choice other than to call triage - again. It will also confirm to me that he needs hospital.

I will keep reaching out, thankyou @hanami  💗

[hanami]

Goodo, @maddison , I'm glad for that. 😊

💕💕💕

[Appleblossom]

@maddison 

Thanks for your kind wishes for son and I.  

I wondered if your housemate knows if he verbally lashes out once more you will call triage.  If he actually feels better at home, he might be able to use it to steel himself for containment and manage his negativity without it spilling on those he probably also cares about, you.  

I am very  careful to keep householding expectations low in crisis times.  Home as sanctuary being highest priority.

Hi @hanami 

Gentle Hugs @EternalFlower Yep ask for that form ... that way you show you are complying with policy ... weary sigh ...

[maddison]

No worries @Appleblossom 

I understand the disappointment when let down by health care system.

I like your outlook of 'home is sanctuary.' It is mental reminder in trying to prioritise his needs.  Unfortunately he is very unwell at the moment. I'm sure he is using every bone in his body to stay somewhat grounded. 

And I absolutely agree about keeping household expectations low. It feels good to have people who understand this experience to connect with. I definately feel less alone. It can be such an isolating experience. Even trying to get help, or put into words to health professionals what is going on can feel so difficult to explain. So it is very nice for me to have someone who understands. I imagine you have been through very similar experiences with your son.

My housemate is aware that triage, & hospital are options I am considering. Honestly, he is at level of distress that he almost is welcoming more intense support than I can give. It's upsetting for both of us. Taking it slow 🙂 Thankyou💗