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Positive stories for schizophrenia

33 replies

Herewegoagainok · 27/06/2021 21:27

A close relative has just been diagnosed with schizophrenia. He has displayed classic symptoms for years but his diagnosis has just changed from psychosis to schizophrenia which he is having a hard time coming to terms with. I think the fact that this is something he will live with forever and will have to manage and treat rather than coming off the pills once he's better which is what he was expecting with psychosis.

I'm trying to find positive stories of people living a normal life post diagnosis, can anyone help? I found a website called schizophrenia survivors but it is American and all the stories were from university graduates and academics which he wouldn't find relatable.

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Herewegoagainok · 28/06/2021 13:19

Just bumping up for some more views Smile

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glitteringfishy · 28/06/2021 17:39

www.ted.com/talks/eleanor_longden_the_voices_in_my_head/details?language=en

I found this really inspiring, unsure if it’s quite what you’re looking for but thought it might be worth sharing.

Herewegoagainok · 28/06/2021 21:32

Thank you I'll give that a watch.

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VentBox · 28/06/2021 21:34

The Rethink website might offer hope.

MyNameForToday1980 · 28/06/2021 21:36

I came to recommend that exact Ted Talk @glitteringfishy!

DuchessofDenmarkStreet · 28/06/2021 21:59

Check out if you have a Recovery College near to you. Some of the tutors or trainers will be living with psychosis/ diagnosis of schizophrenia.

Herewegoagainok · 28/06/2021 22:10

Brilliant suggestions thank you.

I really enjoyed that Ted talk but I think it's too soon. It's been a hellish 12 months looking for meds that will alleviate the symptoms and the difference with the current ones is amazing. I'd hate to push anything that even hinted at a no meds goal at this early stage. I do really like the talk though she's taken the fear away from it all.

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Allllchange · 28/06/2021 22:11

Hearing voices network. And also the info about schizophrenia on royal college of psychiatrists is really reassuring.

Allllchange · 28/06/2021 22:18

The Hearing Voices Network gives a completely different perspective that some of the voices can be positive and to separate out which you do and don't listen to rather than just focus on taking medication to get rid of them

Herewegoagainok · 28/06/2021 22:39

I looked at hearing voices network and actually I think part of current wobbles is that he thinks we think he's cured when he's actually still experiencing some voices so anything that normalises the voices and encourages acceptance of them could be good right now.

No recovery colleges near us unfortunately. Post code lottery like a lot of services.

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Awakeupnorth · 28/06/2021 22:50

I'm another person who appreciated the Eleanor Longden TED talk, and the Hearing Voices Network. I found reading the works of Marius Romme and Sandra Escher (spellings?) useful too.

Herewegoagainok · 28/06/2021 23:51

@Awakeupnorth thank you for that I'll look them up

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MistySkiesAfterRain · 30/06/2021 00:54

As part of the Recovery College they do WRAP plans - wellness recovery action plans, you might be able to find this resource online.

Herewegoagainok · 30/06/2021 13:50

Thank you I've found some info on WRAP and will try to find more. Making him think about stressors and early warning signs seems exactly what he needs to do for long term recovery but he hates talking about it and strangely it's not pushed by his mental health nurse - it's always about how he feels on the day and what he plans to do in the future which he just makes up on the spot. It helps her assess him but he needs to start learning how to assess himself.

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DuchessofDenmarkStreet · 30/06/2021 19:25

www.recoverycollegeonline.co.uk/

www.recoverycoco.com

Two online Recovery Colleges

Download Health and wellbeing plans (WRAP) here

www.cnwl.nhs.uk/services/recovery-and-wellbeing-college/resources

greenmacaron · 30/06/2021 19:34

Elyn R Saks. She has schizophrenia and is very bright and a university lecturer. She has a nice TED talk, but I really enjoyed her memoir which is very well written. She isn’t anti-medication, either, much more balanced views which might be helpful.

MistySkiesAfterRain · 02/07/2021 09:58

Going to Recovery College was a turning point for DB, I think its harder for men to talk about. His nurse also did an exercise going over his life timeline and looking at periods of trauma.

As a family member, what I have learned is, and excuse how I am putting this because it is not very eloquent, with DB (your post rang bells), he has goals but they are lofty (get his driving license back-would need a doctor to approve him driving while taking anti-psychotics) and doesn't seem to have a roadmap to get there.

Where over the years we have had the most success is when I've tried to involve myself with what his short issues/goals are (going to classes, sorting out bills companies etc.), especially things I know he struggles with, like making phone calls. So I might find out what goals he discussed in his support, catch up on how they are going, when he is doing things, where I have capacity to help. This has been esp. important at the big moments, getting bill companies set up, small furnishings, doing a big clean when he had a flat inspection, encouraging him to access a charity for debt help, listening to girlfriend woes, liaising with his support team ocasionally. I do not do everything, because its not helpful, but family are friends, simply by being there, are a massive source of support.

I guess his nurse is trying to encourage independence but sometimes its knowing when to push too- if the nurse isn't helping maybe he can ask for a different one, I know when DB changed social worker it got a lot better, his last one would say thinks like 'your sister got all the charm then' to his face!! It was actually his difficulty with social skills that gave him more feelings of inadequacy as a teenager, but he is far more intelligent than me.

Over the years what has helped too is building that entire support network for DB- ranging from a bank manager who knows about his illness, and therefore understanding of overdraft charges, local debt support agency, local mental health charity that he can continuously self refer to for 8 weeks of support, good GP relationship and he gets an annual double appointment, his over 40 health check, hobbies he enjoys, college courses, he did some volunteering and I have seen this lead onto paid work for others.

I also found asking questions about what its like hearing voices, how he sees schizophrenia, and I sometimes just ask him how his mental health is, as I think we forget to ask this, as I want him to know he can talk to me and that I recognise its a constant thing to manage. From asking these questions, and helping, I think I learned one of his struggles was organising (i.e. executive function - I think he was undiagnosed ADHD and possibly dyspraxia, but there is no going into that now as his schizophrenia diagnosis makes it difficult to pick it apart), also remembering appointments.

I do struggle with what ifs - what if it was picked up earlier, I had no idea, we just thought he was unique, and guilt, and blaming my parents sometimes (not to their face), but none of that is particularly constructive. Helping someone with schizophrenia as early as possible with practical things though would be my advice. I was in my early 20s and wish I had done more as he might not have gone round the houses so much. Hope is a very big thing - always hold onto it.

MistySkiesAfterRain · 02/07/2021 09:59

@Herewegoagainok should have tagged.

Herewegoagainok · 02/07/2021 19:18

@MistySkiesAfterRain that is so helpful thank you! My DS has been dependent on my parents for years and years now, we put it down to his quirks, but he was keen to regain his independence until this bombshell (for him, I always wondered what it was that meant he wasn't reassessed with schizophrenia!) and now he feels an independent life will be impossible and it has shredded his hopes.

Does your db have a normal flat or is it a supported living accommodation? He's looking for voluntary work but unfortunately he's got himself a criminal record during a psychotic flare up so I worry that will affect his chances.

I spoke to him for a long time yesterday and he is very much wanting to bury his head in the sand, challenge his diagnosis and doesn't want to see the medical team anymore. This is literally a stemming from the word schizophrenia because it is used so negatively. He has no choice but to continue to see the medical team but the chances of getting him to cooperate with some psychological therapies or college are non existent right now.

So much of your last paragraph resonates. Things went downhill in his 20s after something pretty traumatic and I think it's what's led to this although he is now 40! A combination of depression, anxiety and PTSD then segueing into the very early stages of schizophrenia where he totally isolated himself. Very sad to think back and see how it all fits when at the time we would berate him for shutting himself out and relying on my parents too much (also, not to his face - we have a good relationship).

Can I ask about the driving? We took his keys off him and he never drove throughout the very long psychotic phase he last had but now his meds have got the delusions and hallucinations under control he has been driving again. I hadn't even thought of dvla and the medical team haven't mentioned it. He would be gutted if he couldn't drive, he lives quite rurally nowadays!

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LittleMissNaice · 02/07/2021 19:49

He might find this a useful read.

Is he under CMHT or EIS? An early warning signs plan should be a key piece of work, but it may be his care co feels he's not ready, and doesn't want him to disengage.

Positive stories for schizophrenia
Herewegoagainok · 02/07/2021 20:53

Thank you @LittleMissNaice have you read it? I will check the reviews out

Yes I think that's the sticking point, everyone is towing the line so he doesn't disengage totally. He was under eis in a city and my parents moved to a rural area which coincided with his placement under eis ending and moving to cmht. We believe that this is when he was diagnosed with schizophrenia but bizarrely he was never told, he has lived in the country for nearly 3 years and the cmht mentioned schizophrenia in one of his sessions last week and when he asked why they were talking about schizophrenia they were surprised that he didn't know. I feel like if he had been told 3 years ago or whenever his diagnosis changed, he could have come to terms, got a plan in place, and possibly avoided his last psychotic episode which he has escaped from broken and with a criminal record. Feel sad for him too right now, can't imagine how he's feeling.

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LittleMissNaice · 03/07/2021 09:46

Honestly, it's been a while since I read it cover to cover, but I tend to dip in to find relevant stories that might be helpful.

Hmm, that does make things tricky. It sort of feels that if it's been three years then engagement is probably as good as it's going to get. It can be really helpful to have family involved in early warning signs work. Do you think your brother would agree for you to work on a plan with the team?

NatMoz · 03/07/2021 09:58

I'm not sure if this is what you're looking for but my dad is a long term Schizophrenia sufferer since before I was born.

He got a long standing job at a university for 35 years, married my mum, had children and has lived a fairly normal life. He isn't on tablets but once every 2 weeks he has an injection at the doctor's surgery.

The one thing he doesn't do is drink as I think it doesn't go well with the medication. There could be problems if he doesn't have the injection and we've always planned holidays so it never clashes with injection day but he lives a pretty normal life.

I know there are different degrees of the illness, maybe my dad was lucky but this is my personal experience of it.

My brother has also had mental health issues in the past but again, is under medication and lives a normal life. You would never know.

I have never suffered from any problems. They usually say if there has been no inclination by 30 you're usually 'okay'.

Herewegoagainok · 03/07/2021 17:24

@LittleMissNaice that's a great suggestion thanks. I think 5 years of constantly being asked how he feels, how he is sleeping, scales on whether he is feeling like a 5 or a 1 without getting any insight has left him jaded with it all which I totally get. If we could achieve a meaningful plan together then it would be worth the effort but he just sees this endless cycle of mindnumbing questions that he gives the same answers to.

@NatMoz that's so good your dad has led a normal life. That is actually really lovely to hear. The success stories are brilliant on the internet but tend to veer towards prodigal academic instead of holding down a job in a supermarket and having a decent home life for example.

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MistySkiesAfterRain · 03/07/2021 17:58

@herewegoagainok I don't think about it as much now, but so much of what you say is relatable. It sounds like the 'new' diagnosis is a struggle, and a wobble is understandable.

DB started back with my parents in his 20s (he had been sectioned after losing a job and spiralling), this didn't work out as he was using cannabis, he then went into supported accommodation and then a council flat, drug troubles followed him but he had a social worker who saw sense to move him to a new town, which at the time didn't have the same problems. He flew under the radar in a pretty decrepit private flat for a while, then got on a Housing Association scheme. They gave him a studio flat (which could be lovely if he took more care of it), he was targetted by dealers (long story) and is waiting to be moved again to a more secure flat.

He has something that would show up on an enhanced DBS, he may explore options again in future. I think all you can do is come from a non judgmental place.

DB used to shut himself out a lot, this got a bit easier when he started antidepressants. Look at the DVLA website, I don't want to say the wrong thing.

Also you may or may not know of them but there is a sibling support group run by the charity Rethink that meets by Zoom, a lot have siblings with schizophrenia and they helped me a lot over the years in the past.

I would say DB is moderate functioning, the difference is vast with one of his friends who struggles much more and refuses all help (I feel a lot for them as they have no siblings and 1 parent who berates them constantly). I think DB would say family are a positive, he also gets a lot of exercise, and I would say the biggest positive (which probably sounds funny) is that he hasn't ever gone back into hospital again (except for 1 voluntary admission) as that was just awful.