Lived Experience Forum

[Faith-and-Hope]

❤️☕️ @Exoplanet …. I am up during this night, sitting with you, not chocolate in hand.

[Exoplanet]

@Sophia1 

I don't want you worrying about anything, certainly not logging in {technology can be so frustrating!}. I don't know if I'm reading things right, I want to think I've made a beautiful re-connection, but I also want to believe that person made it out in the real world on their own. Either way Sophia1 I want to say something, that I hope doesn't make you uncomfortable . . . I love you ❤️

Oh yeah, the steroids & the adjustable inflating cushion are magic, I've also gotten a bed wedge since then. I have to sleep sitting up for my chest & the cushions & pillows I had would always slide down through the night. This morning I woke up still sitting up & comfortable 😄 I am feeling good 😄 ❤️

The relief of having everything fall into place & the absolute privilege I feel about being able
to make the decision when I want to end, not having to face the unknown discomforts that may be involved to the bitter end, is so hard to put into words . . . freedom, courage, dignity.

I think the whinging & whining is all part of telling it as it is & I'm so glad you can understand
my directness, I actually think it's been a big part of my problem 'interacting with others' all
of my life?

I'll take that 'Wonder Warrior' title & elongate it a bit . . . I am the 'Wonder flat-chested Woman
Warrior with Sparkles' 😄 😄 😄

My puppies are good, they both seem a bit more subdued these days. I have no doubt they know something has changed, I haven't taken them for walks for 2 maybe 3 months now, though my carer has taken them a couple of times. They also seem to just know they have to be more careful of me, I did go through a very cranky stage with them as I couldn't handle them jumping up on me or sitting on me anymore. But like me, they seem to be adjusting, they are the main ones going through this with me.

I am ready, truth is I've been ready for decades. I remember my Daughter accusing me of suicide when I didn't want the chemo & radiation after the breast cancer, I felt angry - her & the kids were the reason {particularly her} that I never attempted to act on some of the very dark thoughts I would have. I knew everybody ends . . . so I waited. I'm glad I could do that for her, I know many lose that battle - there's another win for the Warrior in me, another reason I'm grateful, dare I say for myself! You say it's an absolute honour knowing me, well I've felt love knowing you & both of those things are such positive wonderful things to have ❤️

It's an honour to have you & all of the loving, supportive people on here, to help me through this stage of my life. So many can't handle it. I feel your hand in mine, as we sit watching the sunset over the ocean, through the forests & I'm squeezing it & drawing strength from you ❤️

@Faith-and-Hope , if you can't bring the chocolate to me, I'll bring it to you - with marshmallows melted on top & chocolate dust covering it all ❤️ ❤️ ❤️

Love to all that need or want it ❤️ @Peregrinefalcon  @Shaz51  @TuxedoCat  @Appleblossom 

[TuxedoCat]

hey there @Exoplanet ❤️ I meant to reply yesterday, but it was a busy day for me to be moderating. 

I just wanted to say you're an incredibly strong person ❤️ I don't have much else to say at the moment besides "I'm sitting with you"

Take care ❤️ 

[Appleblossom]

@Exoplanet 

Love it

"I am the 'Wonder flat-chested Woman
Warrior with Sparkles'

Are you up for a gentle chair sit; you with your puppies and me with virtual puppies to snuggle with later.

Just saying hello

Finished Senior exercise class with lots of good seated things for me.  Your needs are your needs you do not have to apologise. You have earned the right to say it straight as it is, by simply surviving for so long

Hugs

Apple

[Sophia1]

Oh my @Exoplanet 

The tears of love are rolling down my cheeks.

I just knew you would accept the touch and opportunity to open up about everything that you are feeling.

I could never be offended by you Exoplanet.

I love you too in a very special way that others cannot comprehend.

I reached deep and wanted so much for you to find my love to be with you throughout this time that is beyond words.

My love is holding you in my arms and we are feeling that love together.

Yes we will watch sunsets..see moons rising.. stars across the universe. 
I know that your mind will return to the spectacular secret spots you shared with your puppies who also know it is your time.

You will find loving memories with that gratefulness that is cloaking you giving you safe space for your mind to travel wherever you want it to go.

I remember those words from your daughter and your bravery after.

You were strong.

Yes wonder flat chested (boobs get in the way) woman warrior with sparkles. 
I for one will be keeping watch for sparkles soaring upwards like colliding stars.

Is there any music you would like to hear?

poetry? Or even nursery rhymes are so interesting

We could quote excerpts from pieces of writing that is meaningful.

I will have to send out for help as this is not my forte.

Yes no need to worry about me. I am in the real world. 
I like to escape it sometimes and feel magical

You have always sparkled that is magical.

Keep on squeezing my hand and drawing strength. Feel my touch. Sorry about my cold hands🙃

Love Sophia1

[Sophia1]

Hello lovely @Exoplanet 

How did you manage last night with sleep?

You mentioned a few supports like a wedge for your back and let's not forget the whoopee cushion that helped make you more comfortable in a sitting position.

That makes sense having you propped up more to help with your breathing.

Having some relief where you are laying/sitting for the majority of time is a huge plus for you.

Are your neighbours still popping by and checking in on you as your needs have changed?

So many questions. Only answer what you want to as always.

I have been wondering. Yes my mind does not stop much.

Are you dreaming at all and if so would you like to share some of those dreams with us if you remember them as well.

Dreams are such a strong representation of our feelings as they can manifest into visual form as we sleep.

Main thing is that you are resting.

It is very hot and wild, windy weather here today.

I hate the heat. Makes me feel nauseous.

I hope that you have some lovely fresh breezes where you are.

Hug those puppies as close as you can and place your hands where you can feel there hearts pumping. Let that vibrate through to your heart and be at one with them.

I am still holding your hand and not letting go.

I might switch our hands so that we do not stop the circulation. A swift movement that involves holding the other before letting go of the current hand. So you will feel that constant holding.

I am visualising you and I together as I write to you.

I have lit some small candles and they are floating in a bowl of water so that you can watch the water.

I am playing soft meditation wooden flute music with the sound of water moving in the background.

Let me know if you want Led Zeppelin or Black Sabbath.

Any requests?

Well done you for finally being listened to and heard.

You put all of this in place and got this help yourself because you are a warrior.

You will get through this chapter of your life that you have chosen  also.

I am hoping that someone qualified in palliative care will be available to talk to you and answer all if any of your questions.

You will sense when the time is and you will pass through to where you want to be.

I will write again as soon as I can. I cannot always log in to the forums.

I will try again tomorrow.

Let me know if you are tiring quickly and you would prefer less words.

Still here when there are no words; always.

Sending you love flat chested wonder warrior with sparkles

Sophia1

[Exoplanet]

@Appleblossom 

I do get the puppies up on the chair with me, they're learning to sit so I can still put my legs up & I can tell they try not to poke me with their boney bits or claws. I have just a single recliner, so with the giant bowling ball of staffy & the little ball of white fluff up there, it's a pretty full
seat! 🙂 & well . . . . when you joined us for the virtual snuggle, we all laughed so much we nearly broke the arms of the chair ❤️ 😄  Love to you ❤️

Oh my beautiful @Sophia1, our tears joined as I read your words & they will roll all the way to the ocean that we're looking out at through them & there they will stay forever together flowing with the cycle of life ❤️

I don't have any particular music that I want to hear, but you mentioned Led Zeplin or Black Sabbath, I used to rock out on both, but Black Sabbath was my favorite!

He's just a loner
He never says hello
A friend to no one
He's got no place to go
He don't look happy
He looks through furtive eyes
He ain't got nothing
No one to sympathize
All right now
He hides himself away
His secrets not revealed
As life just passes by
He keeps himself concealed
A solitary man
An enigmatic child
A riddle never solved
A prisoner exiled
I wonder if the loner can assimilate
A life less lived alone plays devil's advocate
Has he ever tried to be happy? Reached out from inside
Someone on who he can depend
It's getting too late to recover. He won't stand a chance
And into his own hell he'll descend
Don't descend
Don't descend
Don't descend
Don't descend
No understanding
Of things we already know
He has to live his life
And just learn how to let go, alright yeah
Communication's an impossibility
His own best friend but he's his own worst enemy
The secrets of his past locked deep inside his head
I wonder if he will be happy when he's dead
Come on yeah

But just to balance it up . . . I know Love is all you need ❤️

Everybody's got to live together
All the people got to understand
So love your neighbour
Like you love your brother
Come on and join the band
Well all you need is love and understanding
Ring the bell and let the people know
We're so happy and we're celebratin'
Come on and let your feelings show
Coz love is all
Well love is all
Love is all, can't you hear the call
Oh well love is all you need
Love is all you need at the Butterfly Ball
Ain't you happy that we're all together
At the ball in nature's countryside
And although we're wearing different faces
Nobody wants to hide
Love is all and all is love and
It's easy, yes it's so easy
At the Butterfly Ball where love is all
And it's so easy
All you need is love and understanding
Hey ring the bell and let the people know
We're so happy and we're celebratin'
Let your feelings show
Love is all, yes love is all at the Butterfly Ball
Love is big, love is small
Love is free, love is all
At the Butterfly Ball
When your back's to the wall
When you're starting to fall
You got something to lean on
Love is everything
It can make you sing
At the Butterfly Ball
Love is all, I say love is all, yes love is all
At the Butterfly Ball

I'm glad to hear you're in the real world & don't blame you for wanting to escape it! I think that's what this site gives so many people, somewhere outside the 'real world' that's still real, just a little more love & understanding & not as much descending into hell?

I actually didn't sleep very well last night at all, family drama - probably just in my own head. I'm giving my car to a Sister, she rang last night & is basically insisting I sign the paperwork over for it tomorrow {that's the only reason she's coming out I think}. It's made me very angry, like my property {which I did stand up for my wants & tell them I don't want to sell it to you for the care, I want to leave it to you in my will}, I'd like to own my first & only brand new car, that I got all by myself, until the day I died. But that's not good enough for her, I have to dot all the 'I's & cross all the 't's & make sure everything's set-up & legal before I'm gone. Why can't she just wait & go through whatever procedure anyone who has something left to them in a will does? The fact is I have emptied my bank accounts, putting about 9 grand into paying it out so it was unencumbered when she got it - nothing I do for her is enough . . . when is this going to be about me . . . for her?

Sorry about the rant.

The neighbours, aren't really neighbours, I bumped into a lady I used to work with, at the library one day. She was actually after more carers, as there are lots of people out here that need care - but I knew I was past all that! But at the end of the conversation, she invited me over for a cuppa & although it was absolutely not the sort of thing I would ever usually do . . . I went . . . & I ended up finding a friend! She's got a different 'private' life {she's a dominatrix} & her whole household {partner, kids ect.} are just a little bit different - I don't feel any judgement there at all 😉 They came out today & mowed & tidied & brought me out a little naughty . .. I got 1 can of an old favorite drink . . . & damned was it good 😄

I don't dream, {well apparently, I do, I just don't remember them}, thankfully they stopped for me when I was in my early 20's. Only on certain meds some would come back . . . & they were all nightmares; I never even knew people had good dreams until much later on in life - I thought we all went through horror every night! I'm not sure what to make of all that, but I'd say it's all childhood stuff & the brain just shutting it all off?

The temperature's & weather here's been pretty good really, haven't had to worry about putting the genny on for the big cooler much this season at all {that's good 'cause it's a real bother these days 😉 } It's still cooling off at night, that's the big one for me, I hate it when I can't cool down to sleep!

I've already had all the talks with palliative care, VAD Doctors & the likes. The next appt is I think 'the' appt, though I am expecting some paperwork {bloody paperwork!} beforehand.

Thank you for holding my hand & I will keep holding on to yours ❤️ I am so, so grateful for this re-connection. So sorry I was so stupid for so long! I love you Sophia1 ❤️

[tyme]

Oh hun @Exoplanet - you've brought tears to my eyes. I'm happy for you yet I have sadness in me....

You are so brave.

[Appleblossom]

Ha ha @Exoplanet  Glad to join in with your dogsittingness.

Glad @Sophia1 has been in touch; she has such a lovely emotional way of expressing herself.

I am pretty upset about your sister wanting you to sign over your car before you are ready. Really presumptuous pushy, rude and greedy in my book.

Had a plumbing debacle here .... leak through a wall into spare room closet which was brimming with fabricky things and curtains waiting for the reno to be rehung... minor hiccup in the scheme of things.

So do we want to all meet for a herbal tea ... or something stronger ... your call ... you earned it.

herbal tea only goes so far