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please honk for me xx

96 replies

coff33pot · 15/10/2013 12:07

you are the only ones that understand please honk for me as you bring me luck. in hospital with eldest dd and she has had a breakdown and doesn't know who I am :( I am someone else and she is so scared . I just might now its nearly too late be finally getting her real support before I lose her and need your vibes please z

OP posts:
streakybacon · 18/10/2013 11:10

Oh, lord Sad
Honks and thinking of you. I hope she improves soon. Take care of yourself x

frizzcat · 18/10/2013 13:14

Hope you're all hanging in there coff - still honking in the frizzcat house

coff33pot · 18/10/2013 18:06

you are all brilliant thank you for the honks xx

tbh I am not hanging in there very well infact I don't know what to do or where to turn next.

I am scared that my coping is fast running out :(

OP posts:
EllenJanesthickerknickers · 18/10/2013 18:33

Oh, coff. Sad Sad I really wish we could do more than give you virtual hugs. Keep talking to us if it helps. Don't forget to look after yourself as well as trying to support everyone else. You can only do so much, even for your DD. Much love. Xxx

PolterGoose · 18/10/2013 18:43

This reply has been deleted

Message withdrawn at poster's request.

wetaugust · 18/10/2013 19:00

Coff - I'm glas you posted.

Have a rant / a dump / a diatribe - anything you want.

You will cope - Coffs always cope Smile

zzzzz · 18/10/2013 19:06

This reply has been deleted

Message withdrawn at poster's request.

SauvignonBlanche · 18/10/2013 19:08

Honk Honk Flowers

MariaBoredOfLurking · 18/10/2013 20:51

It's not ok, but she's an in-patient. There are professionals looking after her round the clock, so it's not like before, it's not all down to mum, you can 'not cope' (only mildly, mind you, as your input still does matter) for a little bit.

This is the time to remember that there are some very, very lovely, highly skilled psychiatric nurses out there (yes, I know, & some duds too) who make a living from doing this. They get to go home after their shift, to normal lives, and usually come back refreshed. They often have clinical supervision/ support from their ward sister, and usually a whole multidisciplinary team to help decide what to do next if they hit a brick wall with a patient. They get breaks, with lots of gallows humour in the staffroom, and can go to the canteen if they forgot to bring a pack lunch.

You've been doing that job for years with none of those advantages. If you were staff, this would be called burn-out and you'd be signed off with stress, given counselling from occupational health, and possibly offered medicines to lift the worst of it. Then you'd have a phased return to work, and you'd be respected as an injured soldier from the war on disease.

MariaBoredOfLurking · 18/10/2013 20:55

But luckily you're not staff.

Geese get over burnout much faster Wink, we're like the SAS compared to the normal armed services.

frizzcat · 18/10/2013 21:19

Everything that Maria said - quite excited about being SAS geese
Honking with menace this time Coff

Flappingandflying · 18/10/2013 21:30

Honk honk honk. Is there anything practical we can do. I am in the SE and am around on monday if i can be of any use.

coff33pot · 18/10/2013 22:57

That is just it she is not an in patient as they let her out. Partly because she came round enough to know who I was, that the fleece was not a laptop, that the leaflets were not the magazine rack in the shop, that there were no ants everywhere and her hair clip was not a mobile phone.

And partly because her heart rate wasnt going at 177 beats in the red laying down.

Inital thought was a break down, second thought after bloods revealed an overdose. She had taken a huge amount of tablets that basically turn into morphine plus another lot that flood the brain with serotonin there was the equivalent of 3 grams of morphine in her system not miligrams. So apart from the morphine she developed seratonin syndrome. I was told there was a possibility she would stay that way due to the amount of stress she was under. Frankly after 24 hours of being awake playing imaginary games, and being imaginary people and helping to rid imaginary fears my conclusion was that should my girl remain this way then this was worse than death itself which was her obvious intention.

We have been in and out of hospital with seizures and still non the wiser if they are due to this cyst on her brain. She is drastically underweight and living on 300 calories on a good day. We have had a seizure that was different in pattern and was due to blood sugars going down under 2.

On all visits every psych/doctor has agreed to write on her behalf to the gp to state mri needs doing and why the hell she has had to wait for lumbar puncture,(was supposed to have 2 marker tests/lumbar/mri by now but none done as GP thinks he is above the fucking neurologist) she meets all the critera for anorexia and a dx should be made etc etc. the ovarian cysts need attention due to pain and the lesions found in her abdomen need investigating. Consequently she also had swabs and was told no problem but they have been cultured and now infection/hpv in place. Yep could be cancer but was told by woman gp dealing with womans things that if she would just eat she would not be suffering.

present day: the major meeting where finally her eating was allegedly going to be taken seriously. OH yep another dangled carrot full of promises.

Now they are saying its borderline personality disorder (bearing in mind its not a written official dx) so suggested emotion coping support groups. Told that the second assessment for eating was not going ahead which is what she has been trying to hang out for.

Ironicly though she is being contacted by a dietician and support on dealing with body dismorphia .............but nope nothing wrong other than disordered eating.

Was told by the cpn "try to just sit still no wonder you are fading away. oh and give up stimulant drinks like coffee. She has black coffee only as no calories so that would leave her with water oh and her wrist bland to flick which helps her to ignore hunger pains.

I am going mad, I have this awful dread that I am going to lose my girl by the time they stop fucking around with groups and guesses. My coping is fading. I aparently made the cpn and another woman cry in the meeting and I am glad because I have been crying inside for fucking years. Danger is I am crying on the outside now and that means my coping is fading and I am good for nothing

OP posts:
lougle · 18/10/2013 23:00

Oh Coff Sad Crying doesn't mean you aren't coping. Crying means that you love your girl.

Someone, somewhere, has to help you. What can be done...we must think.

wetaugust · 18/10/2013 23:10

Gawd Coff!

Where do start? It's a total fuck-up!

Psychiatrists can get MRIs done very quickly if they want to. DS's psychiatrist got him a MRI in a week and DS's clin psych accompanied him to the appointmnet and sat in the scan room while he had it. Telling you this to show you what they can do if they put their minds to it.

My heart rate was similar after my op. At that rate your whole body shakes - it's a very frightening experience. She must be terrified.

I know this is 'old hat' but have you tried sitting down and putting all your concerns in a letter to the psychiatrist etc? As we always say, they have more difficulty ignoring a letter. Plus it may be cathartic for you to sit down and lay it all out in order of priority - what you think needs to happen next. A sort of action lplan - although they should already have dawn up a Care Plan for her.

Hang on in there Coff. I wish I could help you in some way.

Have a cry and then pick yourself up and get angry at the way she's being dealt with.

xxxxxx

PolterGoose · 18/10/2013 23:19

This reply has been deleted

Message withdrawn at poster's request.

coff33pot · 18/10/2013 23:49

I dont know what to do really as I guess I am as tired as she is. I could try writng although a psych wrote a huge report with just about her whole life history plus everything about her and how he felt she had severe dismorphic tendancies and fits all criteria for annorexia. Also that he felt due to detox he felt she was not depressed etc but that it was the control of her body that was the main cause of her symptoms due to past experiences.

I might just write it all down anyway.

No her support fell through. Most already know she detox herself of drugs with me (never took them before but some muppet told her it suppresses hunger) because no support was there. Then she went away herself and detox from alchohol which I am proud. Then left with a full care package that didnt materialise. CPN failed to visit and kept cancelling for 7 weeks in a row even to the point of her standing in the waiting room crying to her for help by just handing her a card with a new appointment as she was booked with another emergency.

So she ran to the one that would help and that was out of that area so they discharged her and she had to start all over again.

was very ill and relapsed (alchohol to try and help make her feel comfortable about eating), fought for another detox again with the promise that her eating would be reassessed once that was done. It goes on.

DD said at the meeting she is not getting the support she needs and was told she has had plenty of support look how far she has come with all this detox etc and how well as she done it all herself. To which she replied yes that part was easy and it all stems around my eating issues that is what I need help with! End result was her being weighed which showed she had lost another half a stone since two weeks ago and she said well at least something positive has come out of this meeting. CPN said wont that make you eat and she said why would I want to do that and told her dying doesnt scare her in the least but putting on weight and not being in control does.

Its an awful illness. When she is really poorly she wants to get better but as soon as she feels slightly improved then she says there is this side that is telling her to carry on :(

OP posts:
coff33pot · 18/10/2013 23:56

The difficult thing is the CBT for emotions etc she is already doing to help her suppress hunger. She is clever (or this other voice is clever) to be able to turn coping mechanisms to her advantage around her anorexia. I can see it but no one else can and I can see that this next lot of coping help wont do much more than more damage.

They want her to confront her past which she refuses as she supreses that by not eating. If she faced it she would not cope and eat less again and has said both need to run side by side but they cant see it.

OP posts:
wetaugust · 19/10/2013 00:11

Hi Coff

If the psychiatrist#s report actually says that she meets all the criteria for anorexia then that is in fact a diagnosis. He/she doesn't actually have to say 'I have diagnosed Coff's DD with anorexia'. It's implied - if he says she meets the criteria she has a diagnosis.

It's so complex that it's very difficult to offer any idea - apart from writing a letter.

What do you think should happen next.

Is there a sequence of actions you think needs to happen e.g. MRI for cyst, then.... If so you could ask for these in your letter.

It's getting to the stage where you almost need to raise a complaint against them for failing to deliver adequate support. I know that anorexia is incredibly difficult to crack - let alone all the other associated problems she has.

Surely an MRI would rule things in/out and let them devise a way forward? I always think that when they're at a loss to explain things they go for the vague diagnosis e.g. personality disorder.

If there's anything I can do please PM me.

coff33pot · 19/10/2013 00:54

Thanks Wet I am going to dig that report out and re read it as I am dead sure he said she met criteria. If I remember right he did say if she needed support in it he would help so it might be worth contacting him. (so odd that writing things here jogs memory)

Yes it is complex. And I have insisted that MRI done. Infact anything test wise she is waiting on ie MRI, lumbar, laprosopy (sp). Told them to at least start chipping down her list of to dos so at least her mind is set to rest one way or another and then we would all be just dealing with DD herself iyswim.

I can see how and why the personality disorder bit has come about as the signs and signals are there apart from the impulse bit as she plans to not eat day to day and has a strict routine on her intake etc. there is no impulse about it. Also the overdose wasnt impulsive as she genuinely told them she wanted out if no one can help and wishes she hadnt been found just to wake up and be at that meeting.

Past issues yes can lead to it but quite frankly so can being disbelieved for so bloody long that you know within yourself whats wrong and no bugger will help you.

Think I will bypass the gp and hunt down the hospital that her original scans were sent for second opinion. They insisted on the tests being done and then repeated in 12 months time and that was before xmas last year. GP said she had markers and all was ok she and I are adamant she has had none.

I dont have the money for private assessment and I am so angry I cant find it. If I had then what I would like to see happen was that she went away to an experienced ED hospital with psychs that could help her traumas and her eating at the same time. Its intense therapy she needs just a weekly bus trip to a group meet.

OP posts:
SallyBear · 19/10/2013 06:46

Just reading it all is so sad. I think that Wet's suggestion of writing your own letter is a good one. I would also include the dates of all appointments she has had including the ones that have been cancelled. You need to document their failings and delaying tactics. I would address it to the head of the Trust, to PALs and to the heads of department who have knowledge of her case and finally to your MP. She is being failed by the system.

Kick Ass SAS Geese on the rampage.

PolterGoose · 19/10/2013 08:55

This reply has been deleted

Message withdrawn at poster's request.

wetaugust · 19/10/2013 11:48

Coff

One thing that occurred to me is

Do you know where (if you had the money etc) you would like to send her to get the help she needs?

If so, contact them and ask how you set abaout getting an NHS funded place. I know the Priory (which has a good rep) does take NHS.
Sometimes these places actually help you to secure the placement.

Once a GP has referred you to a Consultant for a certian problem then the Consultant is responsible for dealing with that problem. That means the Consulatnt should refer you on to whichever other Consulatnts he/she feels you need to see - without having to go back to the GP. So your (useless) GP should be out of the loop and should just receive letters about her progress etc with this condition.

So it's definielt worth pushing anu Consulatnts she's been referred to to make their own onwards referrals.

Keep us posted Coff - we're all honking for you Flowers - actually bollox to flowers - have Wine too

MariaBoredOfLurking · 19/10/2013 12:23

It's perfectly possible to have half a dozen co-morbid illnesses, with borderline personality disorder making their detection and treatment more complex. Even the guidelines say so.

So refusing to assess/treat for the other things 'because she has bpd' is nonsense. In any case, the hierarchy is physical>psychiatric>personality so it's a bit dodgy diagnosing BPD when someone is very malnourished.

MariaBoredOfLurking · 19/10/2013 12:26

Wet, the GP has to rubber stamp all consultant-consultant onward referrals, else the NHS refuses to pay the bill. They got fed up paying consultant cardiologists to review orthopaedic referrals for non-existent or straightforward raised blood pressure.