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Old 13-02-2020, 08:37 PM   #1
Buttons.
Never knowing...a helping hand or hell to pay?
 
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I could really use some support

Things are positive in many ways for me atm mental health generally better no alcohol for months moved to more disabled friendly property engaging with church activities walking dog tons and so on, however my physical health is pretty bad and Ive started getting brain related symptoms like forgetfulness, confusion, wandering etc which the drs etc around me all seem think points to a certain syndrome which is highly unlikely to improve and will probably get worse until and unless I get a transplant Im waiting for. Its very confusing and scary and although I would not say my mental health is in the ill stage all of this is having a massive impact on how Im feeling because Im scared. For first time in years I took an OD the other day out of fear if the brain thing continues to get worse I will lose who I am, however after about ten minutes I managed to rationalise realise I didnt want to die just that living was really scary and got help. Didnt even have to see the Mh team they just did heart trace etc checked I wasnt on deaths door and were like off you pop. Landed up in a&e last night due to confusion and I felt really patronised and dismissed which is frustrating when Im trying so hard. Then support worker situation had complications and the person who eventually rocked up lovely person but v heavily pregnant and said if I was going to sleep there was no need for her to stay, and I wanted her to stay because I felt vulnerable, but I was so tired and last it I was just like yeah whatever. Well Im pretty sure that was the convo. Im confusing dreams with reality a little at tunes, but with this Im fairly certain and she wasnt there when I got up so would make sense.



'Never forget what you are. The rest of the world will not. Wear it like armor, and it can never be used to hurt you.'

['There is only one thing we say to death. Not today'.']

'We are each our own devil, and we make this world our hell. Oscar Wilde
Its hard to dance with the devil on your back. Sydney Carter


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Old 13-02-2020, 08:47 PM   #2
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That all sounds so tough. I do want to say well done on the positive things though. Not sure I have any advice but am just wondering if there is a way of rethinking what the support workers can do for you at the moment? Like more specific roles or more time with you? Or different times of day when you might need more help? Is there any specific support for this syndrome until you get the transplant? I'm sorry if that's a lot of questions, just thinking out loud. <3

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Old 13-02-2020, 08:57 PM   #3
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That sounds scary and upsetting and it is absolutely ok to feel that way. I’m glad you were able to rethink the overdose and get help, that was very brave of you.

I wonder whether it would be possible to put together some kind of briefing summary for the support workers? Maybe the ones who know you and who you get on with could help, and it could just make a few of what you think are the key points to stop situations like one who went away early. I guess they have notes and whatever but sometimes it’s helpful to have something brief and accessible that says exactly what you want it to say.

I also bet there are good sources of information and advice out there for dealing with confusion and memory loss. I’m not sure where to point you but can have a look around if that would help.





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On this rollercoaster.



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Old 14-02-2020, 04:19 PM   #4
Buttons.
Never knowing...a helping hand or hell to pay?
 
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Questions are fine np :) got good news today they are trying to sort out more evening support and in mean time are going to give me a prompting phone call each evening make sure locked door not wandered off eaten etc. Social worker etc are bugging every medical person known to man to get a solid diagnosis so I can have more tailored support/understanding of what’s going on.

I agree Eska re the maybe making a few bites for support workers who don’t know me as well with the ones who do might be helpful both to me and them will look into it.

If you wouldn’t mind having a look around I would appreciate as I’ve looked but I end up getting stressed and mixed up (I think because I’m scared more than the illness) when trying to educate myself and the charity helpline for people who have (or probably have in my case needs confirming by neuro obv) the same or similar issues to me primarily deals with older people and the woman was SO rude and unhelpful and dismissive and uneducated it’s put me right off trying again so I feel a bit isolated.



'Never forget what you are. The rest of the world will not. Wear it like armor, and it can never be used to hurt you.'

['There is only one thing we say to death. Not today'.']

'We are each our own devil, and we make this world our hell. Oscar Wilde
Its hard to dance with the devil on your back. Sydney Carter


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Old 14-02-2020, 04:41 PM   #5
shirayuki
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good news is great!

how are you today? ^^

i can look around if you like ^^"



Don't change so that people will like you-
be yourself and the right person will love you!
Butterflies can't see their wings
they can't see how truly beautiful they are
but everyone else can
people are like that as well
- Naya Rivera
need someone to talk to? PM me, I'll respond as soon as I can ^^
just in case you have forgotten today: you matter, you are loved, you are worthy, you are magical

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Old 14-02-2020, 04:58 PM   #6
Auror.
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Unsure what to say but sending love to you and your dog <3



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This is happening, this is part of you.


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Old 14-02-2020, 05:23 PM   #7
Buttons.
Never knowing...a helping hand or hell to pay?
 
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I started off feeling crummy now feel more positive and supported. If you wouldn’t mind looking around shira that would be great!

Thanks Camden Molly is being such a legend.



'Never forget what you are. The rest of the world will not. Wear it like armor, and it can never be used to hurt you.'

['There is only one thing we say to death. Not today'.']

'We are each our own devil, and we make this world our hell. Oscar Wilde
Its hard to dance with the devil on your back. Sydney Carter


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Old 14-02-2020, 05:32 PM   #8
shirayuki
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sure i really don't mind! ^^



Don't change so that people will like you-
be yourself and the right person will love you!
Butterflies can't see their wings
they can't see how truly beautiful they are
but everyone else can
people are like that as well
- Naya Rivera
need someone to talk to? PM me, I'll respond as soon as I can ^^
just in case you have forgotten today: you matter, you are loved, you are worthy, you are magical

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Old 14-02-2020, 06:34 PM   #9
shirayuki
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how was today for you?



Don't change so that people will like you-
be yourself and the right person will love you!
Butterflies can't see their wings
they can't see how truly beautiful they are
but everyone else can
people are like that as well
- Naya Rivera
need someone to talk to? PM me, I'll respond as soon as I can ^^
just in case you have forgotten today: you matter, you are loved, you are worthy, you are magical

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Old 14-02-2020, 06:40 PM   #10
Buttons.
Never knowing...a helping hand or hell to pay?
 
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Okay thanks managed to turn around crummy mood saw community support guy and support worker was lovely. Managed another step towards independent shower (wheelchair obv complicates things so small victories!) enjoying a cuppa soup now and think am going to take some meat out tonight to defrost to cook something with support tomorrow.



'Never forget what you are. The rest of the world will not. Wear it like armor, and it can never be used to hurt you.'

['There is only one thing we say to death. Not today'.']

'We are each our own devil, and we make this world our hell. Oscar Wilde
Its hard to dance with the devil on your back. Sydney Carter


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Old 14-02-2020, 07:38 PM   #11
Zurg
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I'm sorryto hear this. It seems so unfair that things just keep piling up on top of you. You've had your fair share of crap for several lifetimes. Just sayin'.

I'm afraid i can't change your current situtation but i wanted to pop by and say that i Think you're handling it very eloquently. You are being both brave and resilient. I hope you can hold on to that and find some comfort in it and be proud of yourself too!!!! you are a tough cookie, buttons!!!!! Never stop being that!!!!

I am glad you decided to seek help for the od. But a bit angered and sad that nobody seemed to deal with it in a very appropiate manner. I hope you can hold on to the fact that it was a brave and good decision!!!! I know you're often away from here for some time and so am i, but i often Think of you and wonder how you're doing.

I really hope life has something good in store for you next!!!!!
Sorry for any accidental typos. I've had a minor damage to my eye and my vision is a bit fucked at the moment

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Old 14-02-2020, 08:03 PM   #12
Buttons.
Never knowing...a helping hand or hell to pay?
 
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Thanks lovely that means a lot (do I have you in Facebook? Can’t recall) hope your vision improves xxx



'Never forget what you are. The rest of the world will not. Wear it like armor, and it can never be used to hurt you.'

['There is only one thing we say to death. Not today'.']

'We are each our own devil, and we make this world our hell. Oscar Wilde
Its hard to dance with the devil on your back. Sydney Carter


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Old 14-02-2020, 08:06 PM   #13
shirayuki
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small but important victories!!!

oh no! hope your vision improves Zurg



Don't change so that people will like you-
be yourself and the right person will love you!
Butterflies can't see their wings
they can't see how truly beautiful they are
but everyone else can
people are like that as well
- Naya Rivera
need someone to talk to? PM me, I'll respond as soon as I can ^^
just in case you have forgotten today: you matter, you are loved, you are worthy, you are magical

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Old 14-02-2020, 08:26 PM   #14
nonperson
 
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I'm glad you had that good news today, Buttons. And also glad your social worker is fighting hard for you! It must make it at least a little easier knowing you have people on your side. The evening support and the phone calls sound like a really good idea as well. You've always got support here as well.

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Old 14-02-2020, 08:32 PM   #15
shirayuki
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yup ^^



Don't change so that people will like you-
be yourself and the right person will love you!
Butterflies can't see their wings
they can't see how truly beautiful they are
but everyone else can
people are like that as well
- Naya Rivera
need someone to talk to? PM me, I'll respond as soon as I can ^^
just in case you have forgotten today: you matter, you are loved, you are worthy, you are magical

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Old 14-02-2020, 09:05 PM   #16
Buttons.
Never knowing...a helping hand or hell to pay?
 
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Thanks guys girls and sheep



'Never forget what you are. The rest of the world will not. Wear it like armor, and it can never be used to hurt you.'

['There is only one thing we say to death. Not today'.']

'We are each our own devil, and we make this world our hell. Oscar Wilde
Its hard to dance with the devil on your back. Sydney Carter


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Old 14-02-2020, 11:03 PM   #17
Buttons.
Never knowing...a helping hand or hell to pay?
 
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No prompt call. Luckily I have my head on atm so have locked the door and going to take meds shortly but it’s not exactly reassured me that the help is actually going to happen at some point. And as weekend tomorrow doubt will get sorted til Monday at earliest so just fingers crossed head stays on until then!



'Never forget what you are. The rest of the world will not. Wear it like armor, and it can never be used to hurt you.'

['There is only one thing we say to death. Not today'.']

'We are each our own devil, and we make this world our hell. Oscar Wilde
Its hard to dance with the devil on your back. Sydney Carter


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Old 15-02-2020, 01:28 AM   #18
Auror.
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Ugh that's really frustrating.

Important question though, does the new garden have a good spot for Molly to hide her bones?



You can't always keep it separate.
This is happening, this is part of you.


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Old 15-02-2020, 01:39 AM   #19
Buttons.
Never knowing...a helping hand or hell to pay?
 
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Just a tad!

Ha ha she’s actually stopped hiding her bones and such in the garden- There’s more interesting wildlife to chase here :p



'Never forget what you are. The rest of the world will not. Wear it like armor, and it can never be used to hurt you.'

['There is only one thing we say to death. Not today'.']

'We are each our own devil, and we make this world our hell. Oscar Wilde
Its hard to dance with the devil on your back. Sydney Carter


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Old 15-02-2020, 03:12 AM   #20
Auror.
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Oh no! More exciting endeavors than hiding bones? I'm glad she likes it though! Is there anything nice the two of you can do together this weekend to stay occupied, even if just cuddles?



You can't always keep it separate.
This is happening, this is part of you.


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