Lived Experience Forum

[PeppyPatti]

Golly, sorry @Shaz51 

[PizzaMondo]

@Shaz51 I can imagine it must be difficult living with and managing various health issues and the symptoms of those that can arise. I am sorry to hear that your sleep is disturbed too with your frequent bathroom trips, but know that the release would also be exactly what you need in that moment.

Do you have different doctors and supports for yourself currently to assess and review your different health conditions?

I recall reading your post about Mr Shaz and ASD - it can definitely put a lot of our lives into perspective. I hope that he can continue to seek out that assessment to receive a diagnosis if that will bring closure and further understanding of himself ❤️

[PeppyPatti]

That is so compassionate and empathetic. These messages is what I absolutely adore about Sane Forums. 

"The most difficult skill I have to exercise is holding space.

It’s my first time at doing life. I don’t have any advice." 

I feel this - holding space is you @Glisten holding my space. I get it. I'm holding my son's space. My friend @Glisten is helping me hold myself up. 

This is what I do, I'm not stressed at my sons, both of them  living their  own lives - I'm happy that they  feels they  need to do it. But it's just the presence of both my 2 sons. I'm not in their

 

lives. They are not here. 

They have forgotten about healing my heart. Are they healing their own hearts ? 

[Shaz51]

Thank you @PeppyPatti , @PizzaMondo 

Yes have regular specialists appointments,  blood tests,  on insulin injections twice a day now 

The specialist is delaying the dialysis as long as we can 

Yes Mr shaz can see and would like to get a diagnosis 

[PizzaMondo]

I agree with you @PeppyPatti - this is what I also love about the SANE forums community - we are all holding space for each other.. however, I think it's important for us to keep checking in with ourselves what our capacity also looks like.. do we have the energy right now to hold space for another? Or maybe I could use that remaining energy on myself and refuel before I start holding others again ❤️

I am curious about your last line (again :P) of:

They have forgotten about healing my heart.
Are they healing their own hearts?

And it makes me think if my parent was asking me this, I would like to share with them:

I may be away healing my heart right now, but that does not mean you don't live in my heart. I have not forgotten you, but I want to encourage you to heal your own heart. How can others heal something that is so crucial to our personal living? What does your heart need? What does it crave? What have you maybe always wanted to do or what brings you joy? These are the questions I ask myself in order to heal my heart, I wonder if you might want to have a conversation with yours and try asking too ❤️

[PeppyPatti]

Dear @PizzaMondo 

No worries. Thanx. I appreciate that.  Sometimes I don't feel I explain myself properly which is staying in the complete now and ......you know.....I love learning from other people therefore - I search online for award winning photographs I feel show an element of me. 

All you need is love. 

I try to study a chapter of an challenging book by a Psychotherapist called Daniel Stern, someone when in my 30s ide just continuously read and understand. Today not really but am getting there. 

I'm almost ready to start drawing and practicing the guitar again....  

 

[PizzaMondo]

@Shaz51 I am glad to know you have access to specialists appointments, and that they can be regular! Are they delaying the dialysis in hopes that some other area of your body/health can improve or even out levels?

That's good, has he been able to get a referral?

[Shaz51]

@PizzaMondo , I had the fitual mapping done and the hospital want me to go on the dialysis soon but the specialist is waiting for the numbers to be in the range which means it has to get worse first 

No , have not got a  referral yet , going to ask MI team to take the next step as they think he has asd 

[PizzaMondo]

Ahh, I see. I can imagine it would be maybe.. correct me if I'm wrong, but perhaps frustrating that on one hand, one professional is saying to get onto it soon while the specialist is waiting for further ill health.. I hope that you have answers real soon @Shaz51 and that you can feel comfortable with better management soon 🙂

Good next step, that referral is gonna be necessary for Mr Shaz to get things moving!

[PeppyPatti]

Truly thought provoking @PizzaMondo 

Love your questioning. What does a heart crave ? 

Are your questions a way to think about you and your place in this world ? 

My partner was a very naughty person when we decided to start a relationship - he spent until he was 53 being naughty and oh so selfish.  I just pretty much said, ' oh. I just care about your soul and sort of just lived my own life and 2.5 years ago - 2 years into our relationship, he turned his back on his naughty behaviour.

He is truly constantly present with my sons. 

I am grateful. 

What does a heart crave. I'll get back to you when finished chapter 2 of author  Daniel Stern who has written a psychoanalytic book about infants. I'll probably get it wrong though - just warning ....