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DID is ruining my life

13 replies

Dissociataurus · 06/08/2022 13:46

Please, please, please if any of you have had a positive outcome from this wretched illness will you tell me how it was achieved?

OP posts:
NoEffingWay · 06/08/2022 16:29

Do you have the diagnosis or is it someone you know?

Dissociataurus · 06/08/2022 18:27

It's me that has the diagnosis (I also have a CPTSD diagnosis).

I am just utterly miserable with it all. I have woken up covered in bruises, think I have broken my foot and possibly my arm and have absolutely zero idea how it has happened. I am terrified of A and E due to repeated awful experiences so trying to wait until Monday when I can go to X-ray walk in and avoid A and E.

OP posts:
Hopeandlove · 06/08/2022 18:29

If you have broken your foot then you don’t want to wait. I haven’t had it but what help and support do you currently get?

Dissociataurus · 06/08/2022 18:36

I had a case manager but that is being removed and not replaced. The removal is at my request but I wanted a new one however they have said they have no resource for it. I had group therapy but they've taken it out of my treatment plan yesterday and I have (or had, I don't know if I want it at the moment, I have very much not wanted it this week and told them) individual therapy but things are really bad at the moment for various reasons.

I don't have a care coordinator or psychiatrist so I have cannot access any help apart from the Crisis team when things go bad (so no medications unless I go to A and E and go via psych liaison to the Crisis Team). The crisis team don't really know what to do with me when I am dissociated.

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Vernonia · 06/08/2022 18:42

Have you come across Carolyn Spring? She speaks and writes about her experiences with DID. Her website is full of resources for people with DID, and for therapists (she’s now a respected trainer).

https://www.carolynspring.com/start-here/
Her podcast is great. The second one is called ‘Is Recovery Possible’ so might be a good one to listen to:

Podcast on spotify

Her books are often 99p on Kindle, and there’s a free downloadable resources guide on her website.

Dissociataurus · 06/08/2022 19:58

I actually had heard of her, and I have read some of her articles - I will go and look at the podcast you suggested, thank you.

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Vernonia · 06/08/2022 20:29

I hope it strikes a chord.

Also The Body Keeps the Score by Bessel van der Kolk is amazing as a general resource.

quietnightmare · 06/08/2022 20:49

Do you know how many identities are a part of you? And are you aware of your triggers? Have you tried setting up camera in your home for when you can't recall what has happened you can watch? Do you have anyone in real life to speak to? Can a GP help? Surely the care that's been removed NEEDS to be replaced. Stay strong OP

glitteringfishy · 06/08/2022 21:19

I’m so sorry you’re struggling so much. I really hope you can get your foot and arm looked at, it must be so distressing to be in pain and not remember how it happened. Is there anyone close to you who could help you or go with you to have it looked it?

I also have DID. What is helping me most are twice weekly psychotherapy sessions, privately - paid for with PIP money. It’s extremely slow work, but I believe we are getting somewhere (6 years in!) I don’t find my CMHT are particularly able to help, although I do have a care co who tries to understand. I’m sorry you don’t have that support, it sounds like you could really do with it.

I was also going to recommend Carolyn Spring. Have you heard of first person plural? They have useful information on their website, and members forums which help me feel less alone. People who understand. Also Dr Mike Lloyd, of the CTAD clinic, has some really great videos on YouTube that are helping me understand my selves more.

I really feel your desperation. I’ve been there too, for many years everything was utter chaos and confusion. Things are by no means ok, but I do believe it’s possible for things to be better.

Dissociataurus · 07/08/2022 10:11

Do you know how many identities are a part of you? No, I thought I did know at one time but now I think there's some I didn't know about.

And are you aware of your triggers? Some of them, my outgoing case manager is definitely one, and I have been saying this for months but they have always refused for her to step aside, until now, but the new treatment plan not only removes my case manager it removes my group therapy (which to be honest I don't want to do right now but may want to do in the future)

Have you tried setting up camera in your home for when you can't recall what has happened you can watch? Yes, we have one in the bedroom so I know night's are absolutely chaotic.

Do you have anyone in real life to speak to? Not really at the moment (long and outing story but some of my trauma is being splashed all over the press at the moment so things are really hard). I am avoiding people like the plague because it's very obvious some of it relates to me and I just cannot cope with talking about it with anyone. My fiance walked out on me last week as well because he just cannot cope with it anymore (which I fully understand, I cannot cope with it and he definitely does not deserve this).

Can a GP help? My GP is lovely and understanding but I am not sure what else I can ask for. The service I am under does not like patients being under other services (although some are).

I do feel my case manager needs replaced but basically they said there is not the resource and I think they are just fed up of case managing me the last few months when I have not been feeling safe.

I've had individual therapy for a long time (and am constantly told to me grateful they have offered it) but in the last 9 months, 4 people (including my long-term psychotherapist) have left from my care team; 3 from group therapy. So it's not been a very stabilising time and there's been quite a lot of dishonesty I feel throughout this time as well.

I am going to listen to Carolyn Spring whilst trying to sort out the state of my home today. It's just chaos everywhere here from when I have been dissociating.

My arm is feeling slightly better my foot is not, if I go to the GP tomorrow I can get an x ray form which at least means it can be x ray and only then will I have to go into A and E if there is a diagnosis rather than go through all the awful comments I usually get in there.

I'm sorry others have been through this. Thank you for replying.

OP posts:
Dissociataurus · 08/08/2022 03:27

Been on the call for 111 now for over three hours

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Dissociataurus · 09/08/2022 11:08

What is the difference between a care coordinator and a case manager?

I've asked for a case manager replacement when resources become available if I continue with therapy.

OP posts:
quietnightmare · 16/08/2022 23:39

Hope your ok Op I don't have any advice just checking in

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