Exo's Exposé

[Sophia1]

Dear @Exoplanet 

I saw that you were on line and am hoping to catch you if you still are.

Only if you feel like responding.

I am saddened by more news of your health update.

I really am speechless.

I know and realise that you know that this insidious disease is affecting so many and the majority of us I believe would know someone impacted at some stage of our lives.

This does not help you at all.

This does not take away all of those emotions racing through you, in particular rage of some kind that I sense when I read about the insensitivity of your family members.

I feel furious myself reading what was said to you by your daughter. I know some might tell me people say things that they do not mean when they cannot deal with stuff that terrifies them or is not within their capacity to deal with.

I listen to horrific stuff from my son when he is in psychotic states which is quite frequently in the last couple of months of the year due to his life stuff.

Regardless of my love for him and empathy around his terror; I let him know that he cannot speak to me like that.

So love; fear; rage and much more do become intermingled.

Whether or not he is capable of hearing I will never know.

I can tell myself though that I respect myself and will continue to not let people verbally abuse me.

You have that right and please, please put yourself first.

I know that you are protecting her by telling her after Christmas.

This I understand as a mother myself.

This is you showing how loving a mother you are and have been. I have always recognised this in you.

You have compassion and empathy along with such drive to survive on your own.

My warrior friend, you are to me.

Life is just a question mark to me.

I have said too much.

I hope that I have not offended you in using the example with my son.

I hoped to emphasise strongly no matter how many years we hold our children; love them deeply despite their behaviours; lack of communication; we must not let them derail our self love and self respect with their uncontrolled outbursts.

Sophia1

[Sophia1]

A different response @Exoplanet 

Is there anything that I can do for you?

A silly question given that this is virtual perhaps.

However, I would like to read your thoughts on how I might better support you through this if you would like that.

I will do my best within time frames that I can be at my computer.

I will definitely make an effort due to your health.

Sophia1

sending you warm energy waves

[Faith-and-Hope]

Hi @Exoplanet 

Thinking of you.  If you’re up for a check-in I know I am not the only one who will appreciate hearing from you no matter what is or isn’t happening …… ❤️

[Sophia1]

Hello @Exoplanet 

Sending you warm wishes and caring thoughts.

I cannot take away your pain as other's cannot take away mine.

Each of our pain different.

I can let you know that even when I do not write to you there is a special place for you in my thoughts.

My memory is not reliable at all.

sometimes I forget names.

I will always remember the connections that we have shared.

Sending you love

Sophia1

[Exoplanet]

Hello Everyone, @Sophia1  @Faith-and-Hope  @Shaz51  @Appleblossom 

A special 'Hello' to Sophia, I feel a bit bad that you've reached out so much with your support & I haven't even gotten on the Sane site to check it. But I know I don't have to feel bad, I know you & everyone that supports & posts here, understands. Sometimes you want to communicate all the time, other times you don't. I just feel pretty tired, my thoughts, my body, everything just feels pretty tired. I'm still pretty crook, still thinking 'when is this comfort care gonna kick in?'. But then I'm still being diagnosed, I'll make an appt Monday {I forgot last time I was in town}, which means it might be up to a week before I can actually get one; to find out what's in the letter that the specialist sent & start trying to start some paperwork. I have a transport subsidy scheme, also my super to try & access & then there's the VAD stuff to start learning about. 

Sophia, your doing the most wonderful to help already, you're thinking of me. Just getting on the site & finding supports & posts is some of the best medicine I can get! Having someone realize I've got a lot going on in my head {because they know what that feels like}, that my thought & emotional process is fried & still thinking of me, is precious ❤️ 

Love to you all ❤️

[Faith-and-Hope]

New Years hugs to you @Exoplanet ….. ❤️

Good yo hear you making some plans in your immediate circumstances ….. great baby steps there ❣️  Taking time out from the forums is self-care too, and you are right, we do understand here.   It’s all part of the territory, and part of the territory to know that you’re thought of, and sitting down over a cup of tea is never alone in forumland ….. we are in each others thoughts and sitting by the side of someone, somewhere in spirit.

xxx 🌷

[Appleblossom]

@Exoplanet I enjoyed your stories about your dogs, the fencing and your trips.  I think you are a very brave woman.  Estrangements are difficult.  I know it in my case as well.  You do have the right to live your best quality of life with all the resources possible, in your way.  Keep checking in when you want to.

Gently Bently Apple

[Sophia1]

Dear @Exoplanet 

I check on you when I can

.

I am not on the forums much at moment as with you.

I saw your last post and read the beautiful message that you left for me.

I too feel the same it is the effort that someone makes in writing to a person regardless of their own life crises.

so it is my turn to thank you from the bottom of my heart for what would have been a draining exercise for you.

Your letter means so much to me also and helps me in return.

This is a beautiful experience to hold onto isn’t it. 

You have so much to deal with. 
I hope that you can have an advocate supporting you with such tiring paperwork and bureaucracy. 
There used to be disability advocates. Mental health comes under that category.

You know what you can manage 

my warrior friend. 

I tried to find a beautiful garden setting for us to sit in.

(Do you remover some of our virtual letter writing stories.

You wrote so beautifully.)

and computer would not let me attach pictures of gardens.
. I think that they are all pininterest.

My mind won’t cope with more 

Will try my hardest to leave notes as a reminder to let you know how valued you are

Never feel guilty about not getting back to me

I trust you.

I know that your heart is in the right place

love from your friend Sophia1

[Exoplanet]

I thought I'd known the feeling of being alone, but here I am dying, sick as, but there's no-
one that will come to my home to help or give me support. I'll have to do my own palliative
care {I am already} & I want to stay at home, so I'll have to suffer. I already know I want
VAD. . . what is there for me to want to suffer through the dying process for? My beautiful
puppies, that I basically can't even walk anymore . . . the fear of getting so sick I can't
even get up & feed them? What do people think, I should suffer though it for the loneliness &
the simple sake of suffering - I've had enough suffering before any of this started, now I'm
faced with the knowledge that this suffering will continue getting worse. I've been sick for
6 months already, continuously getting worse & I'm sick of it already! I think it's just
started & I don't feel like I'm getting cared for by the Doctor, a doctor whom it takes a
week, from when I go in to make an appt to where I can actually get one! A Doctor that I've
just found out, does another town - I don't even know what days he's in mine! I think being
rural, not in a town or near any big ones, you have a different end - not so cared for, not
so much about your comfort or what you want, more like you're an inconvenience.

[Former-Member]

@Exoplanet, I know nothing I say will fix how you're feeling. It sounds so isolating, and it's no wonder given the doctors haven't been supportive so far. 

What does support look like for you during this time? 

If you'd like some social connection, I know the Share a cuppa? thread is usually quite busy with some familiar faces. Or our counselling drop-in line can be good to speak to also. 

Sitting with you tonight ❤️