Lived Experience Forum

[EternalFlower]

Hey @tonys @Appleblossom 

Thinking of you my friends....

I had a rough time recently ...disilllusioned.

I tried to tell the care team how hard it was for me but they blamed me, so i found id tell them compliments to avoid getting mire diagnsoes and criticisms on me. 

How is ur day @tonys 

How are u @Appleblossom ur checks in waiting and listening make all things better

[tonys]

@EternalFlower   I'm  doing good my friend,  Stiches came out yesterday and nothings fallen

off  so I just wish I had a genie in a bottle and my first wish would be for you.

I used to be very good at making quick discissions and rushed choices,   Till I got into the habit of saying to people,   'I'll get back to you in a bit'.    You are very vulnerable so please get advice

from someone you trust every time.  I really hope you get NDIS or something,   You deserve love care and attention,  and Oh boy,  I just pray the right people come to you.

Even on your worst days you always ask how I am and that takes Quality mate.

Please take care and please don't rush your discissions .  .  .     tonys   moon base 1 

😊

[Appleblossom]

 @EternalFlower I do not know to make the system work better.  Mostly I have found I have to my own searching for what is meaningful to me. What are the things that give you a lift or a glow inside, when you do them or think about them? 

I used to be very tentative and uncertain about it, but gradually have become more strong and more secure. little bit by little bit. It has helped me to have various people check in with me, whether it be a gp I visited every week for a year, or a support worker or counsellor, just so i had adult human contact.  Some gps will agree to regular check ins.  Maybe that could be a possibility for you??? If nothing else is set up.  Mostly it has been about trying different things and being active.  I have always been therapy focussed, meds are only an adjunct, not the main game. 

With my psychiatrist. I accept him as someone I see every couple of months. I let him set the tone of the session. I was pretty formal with him for the first few years, but am more open with him now and we have basic respect for each other.

Its a week since my last post on here, and it was a yoga and physio day again.  A good day for me. I needed to set a boundary with him, but think I found a good way to do that. Praised him, made him laugh, and found a way I am more comfortable with. 

There are some less successful areas in "my team" but I am 

hey @tonys Glad you are keeping a caring eye on people, even though you have your own ups and downs.  We all do.  Did you have an operation or an accident?  I must have missed something. Sending you warm healing energy.

[EternalFlower]

Hi @tonys hope ur staying warm, safe, healing up. Farm sounds beautiful and im sure u meet some interesting humans....ive met people in my time with a yearning for the rural life. I guess its something that once u have a dream for it u need to make it true..

My dr has been caring and seeing me more frequently, i like how he welcomes me and doesnt shame me if i need more sessions. He just seems to get it that its what i need.

He and i spoke about hope and how my experience with the hospital...ive lost hope, seen how the system folds upon itself and doesnt function. I feel sad. I feel like i expected better. I know i cant change or improve it and thats hard.

I like ur wishes for good for us all here and for keeping us on the right path. An anchor and light

[tonys]

@EternalFlower    something beautiful,  from some one beautiful.   Thankyou Eternal flower.

I like that you said frequently about your doctor.  He can tell you need the time,  They must have you on a health care plan.  I know I shouldn't  but I get frustrated on your behalf.   Its a bloke thing.  we just want to fix things,  Big band aid,  bag of sweets and a she'll be right mate.

Mate I had no idea that the hospital system was so bad down there,  and Im so sorry.  I kinda had Hi expectations for you there.  I  go to a autism group,  once a week,  Dancing e t c.

well we move around the floor like dodgem cars,  so maybe dancing is a stretch,  Is there a community centre that can help get you out with other like minded folks.  Have a dance. .   .

Ive always been a happy but strange fella.   I wish I could see through your eyes just for a day

because I truly want to understand what you see.   I go nuts thinking about why science cant

get it sorted

OH   that reminds me,    mate what happened with that electro treatment you were telling me 

about.  ?.   

I'm not even sure exactly what the condition is you have and I know Its confidential.

I do see new trials for things from time to time,  and think,   now I wonder if Eternal Flower has seen this.

Sorry my friend,   Listen to me going on and on.   

Yes I am very blessed with what I have,   I do love and miss the heart grit and adrenalin of the city though.  Just the words ,  'city streets'  make me tingle all over.

Can I ask you a big favour.   Please stay in touch,   and let me know your progress.   well

everything.    Your are the person I most worry about,   Then sophia,   missing in action.

But I can feel the fall and yours was a big   big  one,     so  I  will go and stop  nagging . . .

just for  now  and hope to here from you when time permits you.

In  my prayers.  .  .    tonys moon base one.  

[EternalFlower]

Hi @tonys hows the fire tonight?

Good conversation???

Thanks its soothing to have the space to talk here and recover.

Im eating m and ms by the tv 🥺🍫🍬

Ive had an ok week seeing the dr frequently. He is a good one...i always get that fear of abandonment but he really is the opposite of that.

He notifed me he would be not in melbourne over the weekend about an hour away and i pointed out i dont see him over the weekend although there is crises contact sometimes and he would take a call out through if i was in crises. I know most people dont have that...

[tonys]

@EternalFlower   hello  friend.   well you sound like your making little forward steps.

                             but  with you I'm always going to worry anyway.   least until you get some good vibe surroundings and peaceful vista.

Yes the fire at my feet and the fire at my toes,   

as sun starts to fade,  the brighter  it glows

Ive got some sweet potatoes in foil and if I don't land a fish,  theres a pot of mystery,   bubbling on the old iron stove.   I'm in the bad books with the book keeper.  She had a big

bag of those flavoured jelly  snake lollies,  and well . . . .  you know what its like .   you  eat one and its like there all connected together.

I'm down the river and soon as the lights dim,  I'll know she in bed. 

And  you've got M a Ms .  .  .    Wanna swap..!

So,   I like your doctor more and more,   They are pretty stretched  so I'd say  he likes you too

I give mine little cards now and then with the nicest words I can think of,     Some veggies too

but they seem to like the cards. 

You must one day tell me about the electro therapy,  I'm curios. 

Now me and the fire are a 7 days a week riverside clinic,  if you don't mind my big bare feet.

So . . .   anytime my friend.       Slow and easy. .     tonys moonbase one

[tonys]

@Appleblossom    Thankyou appleblossom.     Boy I just found this,   These post are faster than the flies swimming in my cup off tea.    If I ever do miss one please know,  its not me being impolite,   I'm just hopeless at keeping up some times.  

So thankyou for asking about leg but its nothing bad at all.   Opened leg fixing the cool room,  and then ,   you know how it is.     you forget,  split the stiches and its back to the sewing box.

3rd time lucky though,   this time they held and she's good as new.  I'm a sook and usually won't let any one else do the sewing,  but this time my friend did the embroidery,   and lesson learnt.     

So ,   I do hope you are traveling well,   You always seem to have all your wire's connected

But then that big brain of yours,  also makes you a damn good poker player,  so  I just gotta hope that If a pelican ever takes a big dump on you,  and theres no other hose around,

well you can trust you uncle tonys with delicate  cranial surgery,

Yes,   you'll have some rubbery bits left over,   but they do make yummy  dried snacks.

I  better go take some meds hadn't  I,     Ok    Ok   I'm going 

Do be kind to yourself                                                        tonys    moon base one

[Appleblossom]

Gentle hugs @tonys @EternalFlower 

Good to get your tags.

It is soothing for me to be part of your conversation with each other as well as between us individually.

Especially

EF: hows the fire tonight?

tony: Yes the fire at my feet and the fire at my toes,   

as sun starts to fade,  the brighter  it glows .... 

Now me and the fire are a 7 days a week riverside clinic,  if you don't mind my big bare feet.

***

Now the 'big feet' line is one of mine, so I guess we all fit in.

I also treasure the fireside cultures of our First Nations people.

You doing darn good virtual cranial surgery mate.

and Eternal Flower I am glad you are trusting your doctor, and that he is prepared to be available for you.

I am also going away for the weekend.  When I booked it I had not done my lumbar spine, but now I have, I am not looking forward to sitting on long bus rides.  Also booked it as a train so I could move around, but they pulled a swifty ... ah well ... thats public transport. aye??  See how I go, cannot pull out now.

Hope I can share my trip with you both when I return.

Snap crackle pop ... go the m&ms in the fire ....

[Sophia1]

Hello dear @tonys 

In a mad rush and just spotted this..

well one of my passions is campfires..

love staying in a boat...parked next to the riverbank

fire lit..late afternoon...watch the sunset and as the fire is distinguished...the magic stars appear..

drinks that warm the soul...

guitar strumming as songs, music, poetry shared,

laughter

I will join you in spirit my friend at your campfire

Your tagging me and words have found me at a poignant time.. perhaps the stars sent me your gift.

a harmonica would be most welcome..

I cannot help but dance and jig....

catch you when life gives me more breathing space..

Sophia1