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Lost Souls Lounge - for those who have fallen throgh the cracks of the MH system

(29 Posts)
OnceThereWasThisGirlWho Wed 18-May-16 16:23:24

Have apparently exhausted every possibe form of treatment offered in this neck of the woods (which appears to be very little to none). Used to being made to feel like a waste of space for being alive and unable to cope. Deemed to be making a fuss if I ask for help. Weird discrepancy beween services judging things as serious and sending police to drag me to hospital as a suicide risk, and said hospital not giving a shit and blaming me for being dragged in. I'm unable to work, wake each day feeling sick, anxious, exhausted and chronically suicidal. Keep trying to keep the smile on long enough to do basic tasks. GP knows and is in despair at the system but doesn't seem to understand why I'm not magically getting better.

Dark humour helps. wink

So here we are.

... A space to vent, discuss things and offer encouragement in the context of not being able to access "help". Service cuts combined with increased demand mean there will be more of us in this position. The original thread seemed like a good idea but weird bumping it months later. smile

As previous thread asked: "Been "escorted" to hospital by the police chasing your ambulance? Been told by the psych team you're fine and there's nothing they can do?"

Finding it tough? Need to let of steam? Found anything that helps that you'd like to share?

Welcome to the new Lost Souls Lounge! <cuts ribbon>

wine wine

(Previous thread here.)

greyscalealmond Wed 18-May-16 20:43:59

Hi there. I was in exactly the same position as you describe - but 15 years ago now, when MH services were better funded: after about a year or so I did actually manage to get some help, so I do hope that you don't mind me posting now. Whereas I very much realise that I had more opportunities than you might, I nevertheless hope my experience will be of some benefit.

The therapy which helped me taught me, essentially, that I can manage without MH services. That whereas I am one of the people they seem unable to help, that's a reflection of their limitations, and I shouldn't feel blamed for their shortcomings. That I can survive extreme distress and suicidal feelings on my own simply by sitting and breathing through the feelings, and by focusing on breathing, staying hydrated, keeping clean.

In retrospect, I think, there's a lot of that which I might have been able to do with the internet rather than the therapy - a lot of it was the basic principles of self-efficacy, resilience, mindfulness etc. I wonder if there are any online resources which teach us how to cope on our own when services can't help us?

AliceScarlett Sat 21-May-16 12:21:54

New thread?

AliceScarlett Sat 21-May-16 12:25:15

Ah just seen the old thread was pretty zombie.

2016! Has Dave closed the cracks yet? Or is it still only short term therapy or meds?

Anyone tried a recovery college?

AliceScarlett Sat 21-May-16 12:45:27

Grey www.dbtselfhelp.com

OnceThereWasThisGirlWho Sat 21-May-16 17:06:53

Alice Who's Dave?! Did it autocorrect DBT..? I'm unsure about recovery colleges... they seem to vary by area in usefulness, but that's only what I've heard/read, not had experience myself. They seem to be a way of discharging people who could do with some support, which I don't agree with, but that's a larger issue and of course the individual things offered may be helpful. It's a shame our society isn't more supportive and inclusive; it seems that to manage in mainstream society is actually a very high bar!

grey Unfortunately, it's not the coping that's the issue... i's being able to do anything more than "cope". I hate being so incapacitated, having to manage the smallest things so I don't get overwhelmed. The sheer amount of time used up by "coping" and the constant effort to do basic things. Returning to work seems a distant nightmare dream. If you don't mind me asking, did you find you gradually got better once you were able to cope with the feelings? Was there anything else that helped?

Today I have cooked a huge vat of soup and am enoying the sunshine too. smile

OnceThereWasThisGirlWho Sat 21-May-16 17:08:27

Oh, just got it. Dave. Bleugh.

AliceScarlett Sat 21-May-16 17:25:20

Yeah, Cameron.

I think recovery colleges can be good if peer group support is going to be helpful... If they could just pair it with 1-1 <sigh>

MarbelousBadge Sat 21-May-16 18:09:21

Oh my goodness Once I could have written your original post word for word.
I've had the Police + Ambulance combo twice in the past 6 weeks now.
Then I got to hospital only to be told there was nothing wrong with me and to go home, that when I got home the Psychiatrist and Crisis team would call me in the morning. Did they call? Did they fuck.
So I was discharged from hospital, even though I hadn't called the Police & Ambulance in the first place, still actively suicidal 20 miles from home with no way of getting back at 4am. I walked 3 miles to the train station and waited for the first train home at 6am.

I cannot work either and just to add a bit of extra fun to the mix work are threatening me that I will lose my job. I was forced back to work after their threats, had a breakdown at work and now at least, they have told me I must be signed off for now although they question my ability to work and my job is still at risk. As a single parent I am the lone breadwinner so this too is a cause of stress and ill health. Even though I have had comparatively little time off.

I'm going to start my own thread about another aspect of it all but flowers to all of you, I know only too well how difficult it is to access support at the moment.

YabuDabbaDoo Mon 23-May-16 22:21:13

I'm so glad to have found you all. I'm high-functioning but have basically dragging myself through every day of my life since age about 14. Tried all sorts of meds, had a new diagnosis most years, have had various private and NHS therapies. Despair runs a mile wide on both sides of my family. I have resigned myself to management on my own rather than cure and it is actually something of a relief.

Question: does anyone else ever pretend that CBT is helping, just because they are too ashamed to admit that it makes no sense and doesn't even touch the sides?

greyscalealmond Wed 25-May-16 10:03:56

Ooops sorry. Only just seen your question

<If you don't mind me asking, did you find you gradually got better once you were able to cope with the feelings? Was there anything else that helped?>

I'm pondering your question. Whereas I appreciate your distinction between "coping" and "getting better", I think for me they probably amount to the same thing. In which case, the answer would have to be yes. As I began to feel better able to cope with my feelings, I stopped getting the police-escorting-of-ambulance-to-A&E-only-to-be-told-to-fuck-off-and-go-home-with-the-promise-of-a-phone-call-which-never-materialised scenarios. I started to develop an inner resolve not to let the lack of suitable MH support to hold me back. But I am aware, in saying that, that I sometimes did get very good inpatient care, and long-term therapy - and I am aware that, for those going through the same things now, both would be harder to access

Beyond the professional sphere, then, other things that helped
- online support. Back then I had to use the local library to get onto the internet, and I think the limit was an hour twice a week. But nevertheless, forums and threads like this were my single best thing.
- local support groups. I've always lived in large cities and I remember that some of those on this thread live in very remote areas where these won't exist, but again, nevertheless, a lifeline. In my experience, group members will do incredible things to look out for one another, so being needed by others helps too.
- fresh air, exercise, herbal tea, classical music, good literature, fruit, organic lentils &etc. They get a bad press for being all hippy-shit and middle-class, so one might argue that they worked for me only because I was born all hippy-shit and middle-class. But they helped.

OnceThereWasThisGirlWho Wed 25-May-16 14:43:53

The police-escorting-of-ambulance-to-A&E-only-to-be-told-to-fuck-off-and-go-home scenario is not regular/usual for me btw! Was quoting originl thread. It's more a case of go to GP, get referred, referral rejected by this stage. The whole thing is just utter disinterest, until you unewxpectedly come across someone who suddenly takes you seriously but they make it all dramatic and ott! Especially friends/others, I find I have to hide how I feel from most people because they just want to fob me off on services and actually seem quite cross that I struggle, and sort of annoyed I'm not "getting help". It's a bit similar on here sometimes tbh... strange, as other boards here have some good debate but being disillusioned or even antipsychiatry here doesn't seem to happen!

So you are saying that once you could cope with the bad feelings you were functioning as normal? My issue is that I can cope, but I can't do stuff. So eg. I may wake in crisis (almost always do actually, even waking crying out and screaming recently) and I can sort of make tea, wrap myself in duvet, have a laugh at mumsnet classics or something. But doing this is incompatible with normal life - I'm not getting up and going to work, for example. So I "cope" but in no way am I coping with normal life, if you see what I mean. And as time's gone on, I am spending more time "coping". It's often days on end of just scraping by in this way.
I force myself to do things but it takes huge effort just to do the basics so I feel like a failure. People seem to think that I should "do more" and that will magically make me happy, as if I'm just bored or something hmm. They dont seem to understnd I have plenty to do, and the reason I'm not it because actually it took all day just to "cope", nevermind concentrate on anything or face going out. It's so frustrating and upsetting, to want to get on with things yet have no drive, no concentration, nothing is enjoyable, and on top of that people judge me and treat me like I'm lazy and stupid.
I'm sorry, I cant pretend i'm fine right now.

Thecatgotmytongue Wed 25-May-16 14:51:34

Can I join in? I've been posting on my own thread, but nice to talk to people struggling with the same things.

I've not exhausted what's available yet, my gp just won't offer me anything! I don't know what I have to do to get help really .... I'm waiting for counselling and my gp won't refer me to the psychiatric team until I've had counselling ... the fact I've struggled with depression and anxiety for years seems to be irrelevant.

Life just seems too difficult and I'm fed up of fighting, but keep going for my daughter (aged 15).

OnceThereWasThisGirlWho Wed 25-May-16 14:56:10

ps. Interestd about the inpatient care and therapy - were you not labelled BPD then? Asking for help in crisis and any police taking you in etc. seems to attract that label. Untreated and excluded from services before it changed in 2007.... unless you are talking about after that. Still, inpatient care seems surprising regardless.

I actually have found that label the most damaging thing that ever happened to me. Simultaneously telling you that you are "disordered", bad, to be avoided, untreatable... whilst also telling you you're "not ill", should just be fine, not deserving of help. I thought seeking help from the mental health system was a sensible solution as I couldn't fix things myself. It just compounded the original issues and I fear I will never recover. It confuses me the way people, esepcially mental health professionals, seem to knock any confidence out of you, criticise thoughts and ideas and standing up for yourself, yet these are the things that one needs to recover.

I am incredibly lonely now because I learnt I was worth more than treating badly, but others didnt agree. This is also very confusing and difficult, because it's like I have a place i'm expectd to fill in society and I'm saying, no, I want to be one of the other people not the scapegoat/worth less than others one. But I'm somehow not "allowed" that...

OnceThereWasThisGirlWho Wed 25-May-16 14:59:52

Hello cat, welcome... smile

I think GPs have to follow a certain pathway through services. The psychiatric team will be very overstretched (they all are) and may insist on exhausting other options before accepting a referral.

I'm sorry I cant be more helpful right now x

Thecatgotmytongue Wed 25-May-16 15:06:19

I agree with the just about functioning, but that not being compatible with everyday life ... I can also just about get up and pretend everything's ok for my daughter, because I don't want her to struggle the same way, but once she's gone to school I go back to bed and stay there as long as possible. I never know whether I'll be able to function from one day to the next, so would be a very unreliable employee, if I could find the energy to leave the house (social anxiety and phobia of germs), but according to the work capability assessment there's nothing wrong with me, I'm capable of working - ignoring the fact that I don't leave the house alone, that I don't get up, don't get washed, don't drive, don't take public transport ... how do they think that's going to work? But because my GP doesn't take it seriously I have no reports, no CPN who can get involved, nothing.

greyscalealmond Wed 25-May-16 18:28:19

Once There was a very brief period during the late '90s and early '00s that there was quite a lot of inpatient care and therapy available for people labelled BPD, mainly following models of therapeutic community and DBT. I agree with you about the label, BTW, agree a zillion percent. And part of why the services I received died out was, in my opinion, because they catered to rather than challenged the label, thereby delivering back into the public domain a cohort of people too stigmatised to really move forward, and thereby showing themselves to be "cost ineffective".

I very much empathise with the using-all-available-energy-simply-to-cope scenario you describe. I don't think many people begin to realise how tiring and how draining that is. A good friend who did understand once said to me "people who manage to live with long-term mental health issues are amongst the strongest and most energetic people alive, because they cope". It's a platitude and an aphorism of course, but I try to remember it to remind myself how far I've come.

greyscalealmond Wed 25-May-16 18:31:47

<waves to cat> It sounds like you're stuck within lots of pathways and protocols which are standing in the way of you getting help. I apologise profusely if you know this and have tried this, but many of the rules and procedures are not inflexible, and sometimes one can argue for being an exception that needs a particular referral now.

Thecatgotmytongue Wed 25-May-16 19:00:30

I just keep going back to my gp, but all they do is give me different anti depressants. I'm not pushy and not good at asking for help.

Broken1Girl Wed 25-May-16 20:06:17

Joins thread.
Police, ambulances etc, check. Too difficult to talk about.

MarbelousBadge Thu 26-May-16 09:28:40

I think my 'story' is slightly different from others.
I have PTSD, caused by an incident last summer, I didn't suffer with mental health problems until then.
It all really came to a head early this February. Since then I have tried to end my life 3 times. Although the hospital administered the care I needed in A&E following my attempts I was never admitted. I'll be honest, I'm quite grateful for that.

I am seeing a psychiatrist but we've hit a medication impasse so this it would seem is it now.

The psychology team won't see me because they say that currently my situation is too acute.

So the medication is as effective as it's going to get but the psychologists won't see me. I feel stuck in an interminable loop.

I absolutely understand what everyone is saying about not being compatible with every day life. My sleep is disturbed so I generally sleep for 7 hours, am awake for 2 then go back to sleep for 2 hours which eats into my day. I do get up and shower every day, I go for walks, drive, I go to see friends although I went to a small party at the weekend but it was too much for me. Hell, I've been to restaurants and I went away on my own for a night a few weeks ago. I'm out there, I'm doing things, I'm pushing myself forward, I have to get better, I have to.
I frustrate myself.

I like Michael Sealey's YouTube meditations.
Essential oils.
Long baths.
Audible books.
Long walks.

I haven't find a self-help strategy - a book, blog or YouTube channel - that actually helps yet but I'm trying, still looking.

greyscalealmond Thu 26-May-16 12:53:40

I never realised the police-and-ambulance scenario was so common sad Broken sad

Welcome Marbelous Really, I don't think medication is ever really a solution to PTSD, and especially not if you had no pre-existing MH issues. No drug can undo what happened to you, sadly - and as such, I don't think psychiatry is equipped to deal with trauma. Have the psychology team given a date at which point you will no longer be "too acute" for help? If not, it might be worth asking them what else they'd suggest. Whatever happened to you, I am very, very sorry.

MarbelousBadge Fri 27-May-16 09:11:36

You've got it greyscale medication isn't the answer but it's the only one available to me at the moment. And no, I don't think they are equipped to deal with trauma or anything that isn't a long term problem, although I accept that I may be a long term customer.

The psychologists are very reluctant to take me on, I don't know why except that I think they aren't really sure what to do with me either. So I don't know when it will be, I don't have an appointment yet or any hint of when it might be.

Where I live in one direction I am 12 miles from a large Army base and 19 miles from a large RAF base, there must be someone there who is a specialist in PTSD. I wish I could access those services but I don't know how to ask and they probably aren't joined up with the NHS either.

MarbelousBadge Fri 27-May-16 09:12:44

Apologies, that was all me, me, me and I've gone off topic.

Please do go back to the original point of the thread.

greyscalealmond Fri 27-May-16 14:57:06

How about asking on the military wives forum on here - I'm guessing there'll be at least one mumsnetter with knowledge of military MH services. You could then find the names of relevant consultants and find out whether they do NHS work and/or whether you might be able to track down email addresses to ask if they take private civilian referrals? #graspsatstraws

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