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Disconnected from the system after a stroke

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Disconnected from the system after a stroke

Postby YunaTheSummoner » Sun Sep 12, 2021 8:03 am

I suffered a stroke a few weeks back, only mild (as far as strokes go) but have been told by some kind of spirit entity that can send me thoughts that the elders had taken the decision to leave me disconnected a bit longer due to contact levels with stroke team needing to be high for another couple of months yet.

I guess they are afraid one of the outside medical teams will discover 'the system''??? ..as I guess they will be likely to look for unusual symptoms that may tell the, whether I'd had any other 'silent strokes' or 'mini strokes'.

I had been hoping seeing family and them taking us out and back to the family home for a meal would trigger some more memories but the spirit guide seems to think the stroke has disconnected the triggers so no-one will come forward!

I am told I was chosen because I haven't been out for a 'significant while' but was the one who identified with the name family/friends call me by. so would easily pass the first medical tests of asking if I knew my {legal} name! and had the highest educational level for being able to communicate in ways other than verbally (they just had to hope I didn't lose my ability to read or type) and had previously functioned completely unaware that I was part of a multiple system.

I was not an alter who spent a lot of time online and seems I was last out regularly around 2016.

I think I came to ask if anyone else had ever been disconnected from their systems in a medical emergency so it was not discovered while you were at your most vulnerable and confused?

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Re: Disconnected from the system after a stroke

Postby ArbreMonde » Sun Sep 12, 2021 11:13 am

From what I know, keeping the system hidden (hence keeping the trauma and vulnerability hidden) is THE main reason for dissociation to exist. Therefore it does not surprise me that your system things it is safer for now to keep you isolated in the control of the body untill it is safe again to reconnect you.

I do not have experience with this phenomenon due to physical medical emergencies but I might have some experience with it due to emotional crisis which lead to (temporarily) trap one alter at the front, disconnected from the rest of the system.

I hope it will turn out this was a wise decision from your system regarding your present situation.
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Re: Disconnected from the system after a stroke

Postby YunaTheSummoner » Mon Sep 13, 2021 7:41 am

ArbreMonde wrote:From what I know, keeping the system hidden (hence keeping the trauma and vulnerability hidden) is THE main reason for dissociation to exist. Therefore it does not surprise me that your system things it is safer for now to keep you isolated in the control of the body untill it is safe again to reconnect you.

I do not have experience with this phenomenon due to physical medical emergencies but I might have some experience with it due to emotional crisis which lead to (temporarily) trap one alter at the front, disconnected from the rest of the system.

I hope it will turn out this was a wise decision from your system regarding your present situation.
__
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Surely a stroke would be capable of much emotional distress given its capacity for a person to suddenly regain consciousness and not know who they are, unable to speak or left paralysed???

Fortunately there is no permanent paralysis, but it seems there is some difficulty in information reaching other areas from the brain as we are struggling with the 'motor planning' aspect of physically 'getting words out'...sometimes we forget the word we are looking for but that has not been a major issue and more for words new to us.

I had a thought....could damage to a specific area of the brain prevent triggering of alters??? or prevent me accessing the inner world if I no longer had the capacity to imagine it?

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Re: Disconnected from the system after a stroke

Postby YunaTheSummoner » Tue Sep 14, 2021 9:17 am

Hi @ArbreMonde and team

I have talked to someone who has experience of neurology of the brain and DID. I explained where my memory difficulties are and their response was that

"It sounds like your stroke caused a deep dissociation from your self-identity as a multiple"

There seems no way to know whether this will be permanent or not. :cry: From the aspect of memory recovery in non-DID stroke patients it can take anything from 3 months to several years.

So I feel I don't belong here right now, so if admin want to remove my username feel free I won't be coming back (unless the others are restored and find their way back here) but please post this first so I can thank ArbreMonde for their responses.

Thank you

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Re: Disconnected from the system after a stroke

Postby lilyfairy » Tue Sep 14, 2021 9:38 am

YunaTheSummoner wrote:So I feel I don't belong here right now, so if admin want to remove my username feel free I won't be coming back (unless the others are restored and find their way back here) but please post this first so I can thank ArbreMonde for their responses.

Hi Yuna

You are welcome to post on any of the forums, or even just poke around in the background to read if you want to. Being able to post in any of the forums here is not dependent on someone having a diagnosis, or that their symptoms all fit in a particular box. Lots of people's symptoms don't fit in any one box- I know mine don't.

If you would like to deactivate, there is the option to do that in your own user settings. Or you can leave the account sitting there if you would like to return at a later time. Would just like you to be able to have some kind of support- things sound overwhelming for you right now. Hugs if you'd like some.

Please take good care.
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Re: Disconnected from the system after a stroke

Postby Johnny-Jack » Tue Sep 14, 2021 5:09 pm

YunaTheSummoner wrote:I have talked to someone who has experience of neurology of the brain and DID. I explained where my memory difficulties are and their response was that

"It sounds like your stroke caused a deep dissociation from your self-identity as a multiple"

I wasn't there but it sounds like this is more of a rewording of what you described to that person more than the assessment of a therapist with years working with people with DID. I'm not even sure what that means, as in it doesn't seem to add anything to what you've already described. Has it changed your self-identity and who's the self being referred to? In other words, I might not read too much into it, not that you're saying you did.

It sounds to me like you belong here just as much as anyone of us. If you have DID, no matter what's going on with your system, you should find kindred others who can relate to some extent.

It sounds like the stroke was physiological and unrelated to having DID, I can't help but think talking to a therapist or other clincian, with or without experience of strokes, might help.

Our system fears major illness and disability and I could see us stranding one of us in front if our world changed radically and suddenly for an unsettling development like a stroke. There are several sets of circumstances that prevent most of us from being near the front and the commonality seems to be something that's sudden, emotionally overwhelming, and frightening.

This actually happened to me, John, one of the hosts, about a decade ago and the collapse of our normal life and alter balance. We've also had certain participating alters simply stop all participation for years based on assessed outside emergencies, like when we feared we had AIDS a few decades back. I'm suggesting that the departure of alters from the usual participation may be thought of as a protective response to a suddenly changed world.

Also given that memory access is already a symptom from DID, I'm not sure how you can get the fullest support if at least some of your caregivers are not aware of your dual challenge. You may not want symptoms of DID to be read as a result of the stroke because that could lead to the wrong medical treatment decisions.

I know that hiding out is the habit for many systems and it can feel safest, but as we many know on this forum, hiding without end works against recovery and healing. There are many people you can trust in the outside world. The challenge is taking chances that are not habitual nor initially comfortable in order to discover which people are trustable and able to help.
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Re: Disconnected from the system after a stroke

Postby ArbreMonde » Wed Sep 15, 2021 8:17 am

I agree with all of the above!

You do not need to tell the caretakers that you have DID per se, but you can tell them that you are used to living with a lot of dissociative symptoms including dissociative amnesia and PTSD, and that it might add up to the biological stroke issues, so you might need a double therapy (stroke therapy + integration therapy) in order to fully recover.

I mean, of course it's normal that anything stressful in the brain will trigger the old, dissociative protection mechanisms that you have been using all your life. It's what DID and similar are all about. It's why fusion is never a 100% permanent state because new stress can trigger new splits or un-fusion.

The structure of a system is in constant evolution, in order to adapt to the outside environment. So it's completely DID-normal that you are alone at the front right now. It's even an additional proof that you are DID and belong here, in my humble opinion.

We cannot really do a lot about the stroke part of it, but we can offer a listening ear as well as support regarding it to a fellow DID-er. Coz when one has DID everything healthwise is entertwined with DID. (Just the same way as everything in my system's life is also tied to being autistic, among other things)

No part of your health exist in a vacuum. So yep, even if the biological aspects of the stroke have a lot of impacts on your health, it also has impacts on how your dissociation is managed and structured. Heck, it's in the title of this thread :P

A DID alter stuck in front disconnected from the rest of the system, is completely NOT the same thing as a fully-integrated singlet person. You're still DID and how you interact with the world outside and inside is still DID stuff.

So yep, IMO you belong here, especially more so now that you are disconnected from the rest of the system and need a lot of additional support from other DID people who can understand how you feel and what you are going through :)
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Re: Disconnected from the system after a stroke

Postby YunaTheSummoner » Thu Sep 16, 2021 7:37 am

lilyfairy wrote:
YunaTheSummoner wrote:So I feel I don't belong here right now, so if admin want to remove my username feel free I won't be coming back (unless the others are restored and find their way back here) but please post this first so I can thank ArbreMonde for their responses.

Hi Yuna

You are welcome to post on any of the forums, or even just poke around in the background to read if you want to. Being able to post in any of the forums here is not dependent on someone having a diagnosis, or that their symptoms all fit in a particular box. Lots of people's symptoms don't fit in any one box- I know mine don't.

If you would like to deactivate, there is the option to do that in your own user settings. Or you can leave the account sitting there if you would like to return at a later time. Would just like you to be able to have some kind of support- things sound overwhelming for you right now. Hugs if you'd like some.

Please take good care.


Thank you for the hugs :D real ones seem in short supply with a pandemic on the loose! No-one wants to be the one that 'put me back in hospital' after I managed to survive a stroke with minimal effect (compared to how it could have gone! :shock: ) and managed to get out without catching covid!

I did intend to come back to check if anyone replied but was exhausted yesterday after my appointment.

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Re: Disconnected from the system after a stroke

Postby YunaTheSummoner » Thu Sep 16, 2021 8:12 am

Johnny-Jack wrote:
YunaTheSummoner wrote:I have talked to someone who has experience of neurology of the brain and DID. I explained where my memory difficulties are and their response was that

"It sounds like your stroke caused a deep dissociation from your self-identity as a multiple"

I wasn't there but it sounds like this is more of a rewording of what you described to that person more than the assessment of a therapist with years working with people with DID. I'm not even sure what that means, as in it doesn't seem to add anything to what you've already described. Has it changed your self-identity and who's the self being referred to? In other words, I might not read too much into it, not that you're saying you did.

It sounds to me like you belong here just as much as anyone of us. If you have DID, no matter what's going on with your system, you should find kindred others who can relate to some extent.

It sounds like the stroke was physiological and unrelated to having DID, I can't help but think talking to a therapist or other clincian, with or without experience of strokes, might help.

Our system fears major illness and disability and I could see us stranding one of us in front if our world changed radically and suddenly for an unsettling development like a stroke. There are several sets of circumstances that prevent most of us from being near the front and the commonality seems to be something that's sudden, emotionally overwhelming, and frightening.

This actually happened to me, John, one of the hosts, about a decade ago and the collapse of our normal life and alter balance. We've also had certain participating alters simply stop all participation for years based on assessed outside emergencies, like when we feared we had AIDS a few decades back. I'm suggesting that the departure of alters from the usual participation may be thought of as a protective response to a suddenly changed world.

Also given that memory access is already a symptom from DID, I'm not sure how you can get the fullest support if at least some of your caregivers are not aware of your dual challenge. You may not want symptoms of DID to be read as a result of the stroke because that could lead to the wrong medical treatment decisions.

I know that hiding out is the habit for many systems and it can feel safest, but as we many know on this forum, hiding without end works against recovery and healing. There are many people you can trust in the outside world. The challenge is taking chances that are not habitual nor initially comfortable in order to discover which people are trustable and able to help.




Hello John, I'm sorry to hear you had AIDS :( The stroke definitely qualified as sudden, overwhelming and frightening!! .. until it is over quicker than you expected you have no idea whether you're experiencing a full on one that will leave you hospitalised for months or turn out to be the Mini TIA one's.

I seem to be alone up front anyway so I guess technically there are no others present! The stroke team are telling me to give it another month or two to see where I am with memory, fatigue and speech. Even a small event takes time for the brain to recover or re-route itself.

I know I am luckier than many to have this much back already! They injected something that breaks down a clot immediately and I am on blood thinners. An MRI shows white spots of previous 'silent strokes too' They are when a mini one happens in a part of the brain not used so much for important stuff like movement, speech, understanding so often go un-noticed but can be seen on an MRI. They apparently were fairly recent before the TIA.

For now I have decided to focus on the stroke rehab to see how much things improve over the next couple of months. I am on stroke boards too reading others cases to give me an idea of the effects of even small strokes on people's personality and memories etc. If I know what it should be for a certain level of stroke and see where my recovery is going I should be able to work out whether what is left is a result of dissociative amnesia or something. My head feels 'less foggy' than last week.

My main difficulty is I can't actually remember whether people (in my daily life) knows or not - about the DID I mean. For all I know they may already know this about other personalities, but right now everything is about the stroke and recovery.

How many years did yours stop all participation for after your AIDS dx?

Yuna
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Re: Disconnected from the system after a stroke

Postby YunaTheSummoner » Thu Sep 16, 2021 8:35 am

ArbreMonde wrote:I agree with all of the above!

You do not need to tell the caretakers that you have DID per se, but you can tell them that you are used to living with a lot of dissociative symptoms including dissociative amnesia and PTSD, and that it might add up to the biological stroke issues, so you might need a double therapy (stroke therapy + integration therapy) in order to fully recover.

I mean, of course it's normal that anything stressful in the brain will trigger the old, dissociative protection mechanisms that you have been using all your life. It's what DID and similar are all about. It's why fusion is never a 100% permanent state because new stress can trigger new splits or un-fusion.

The structure of a system is in constant evolution, in order to adapt to the outside environment. So it's completely DID-normal that you are alone at the front right now. It's even an additional proof that you are DID and belong here, in my humble opinion.

We cannot really do a lot about the stroke part of it, but we can offer a listening ear as well as support regarding it to a fellow DID-er. Coz when one has DID everything healthwise is entertwined with DID. (Just the same way as everything in my system's life is also tied to being autistic, among other things)

No part of your health exist in a vacuum. So yep, even if the biological aspects of the stroke have a lot of impacts on your health, it also has impacts on how your dissociation is managed and structured. Heck, it's in the title of this thread :P

A DID alter stuck in front disconnected from the rest of the system, is completely NOT the same thing as a fully-integrated singlet person. You're still DID and how you interact with the world outside and inside is still DID stuff.

So yep, IMO you belong here, especially more so now that you are disconnected from the rest of the system and need a lot of additional support from other DID people who can understand how you feel and what you are going through :)
__
Zamiel.


Hello again Zamiel! Thank you all for your support. Several members of your team/family have answered my other posts too. I do appreciate it!

Regarding telling others...my problem is I can't actually remember whether they already know or not!!! cos no-one is talking about anything other than the stroke! I can't remember what's on my medical records or what the Dr said. The only thing I remember about the last consultation is being shown the MRI where the white spots were (showing the stroke events) and what the stroke nurse has written down and left here.

I am reading the stroke boards too and where I find mention of someone saying their personality changed I may use that to bring up the topic with family later as they may say something that indicates they know.

Right now it is not distressing me but I think it's because I've felt quite 'foggy headed and numb' since the stroke, not feeling I know how I should be reacting to it.

I have a rest day today but another appointment tomorrow I will have to have a think what questions I want to ask and if they can write down the answers so I can re-read them later.

My main issues seem to be memory, fatigue and some motor planning issues, particuarly with regard to speaking out loud. They gave me a leaflet about 'Apraxia of speech' after a stroke.

Yuna
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