Care falling apart : I was put under... - Action on Postpar...

Action on Postpartum Psychosis
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Care falling apart

Kats88
Kats88

I was put under the crisis team last Friday as my depression hit a low and my care coordinator wanted me to have more intensive support.

Which was all fine, and they were talking about a meds review and putting me on haloperidol PRN for when the breakthrough psychosis happens when my depot wears off (still can’t believe I’m suffering from PP 2 years down the line) and putting me back on antidepressants, which I was desperate to do so all seemed like a great plan. I was going to be under their care for 4-6 weeks being seen daily for 4 weeks then gradually taper it.

Until yesterday. The psychiatrist came out and said “I’ve looked through your notes and have decided to diagnose you with Borderline Personality Disorder.” When I said “why?” She replied “you have traits of it and to be honest I don’t believe you have bipolar but there’s no other explanation for your psychotic episodes so we’ll have to keep that diagnosis too”. She then went on to say “And I also think your psychotic episodes are due to stress and not true psychosis”. She totally invalidated my experiences. I have been with 5 different psychiatrists and they all say I have psychotic episodes which is why I have to have my depot injection, but she came along and just said she didn’t believe it.

It got worse. I asked to be put back on lithium and she said no. She said I’m on aripiprazole for bipolar and that’s all I need. So instead I said I hadn’t been coping at all well since coming off venlafaxine and mirtazapine so could I go back on an antidepressant. And she said “no, medication isn’t the answer for bpd”. I begged her, through tears saying “but I’m so depressed” and she just dismissed me saying “medication won’t help”.

She then said the only treatment they would offer was DBT, and I said i’d Done it in hospital and didn’t want to do it again. She said it was the only thing they would offer me but there’s a 12 month waiting list. So what am I meant to do for 12 months?

Then she said that my planned admissions to hospital for “crisis breaks” would be stopping, even though it’s in my care plan, because “hospital won’t help bpd”. The idea was when I felt myself going into crisis I would go in on a planned admission through my care coordinator and the consultant on the ward for a break of 72 hrs - 1 week just to prevent crisis. But now that option has been taken away from me. I was due to go in next week but now I’m not.

Her parting words? Whilst I sat there sobbing begging for help she told me that the crisis team couldn’t help me so I was being discharged next week. They would continue to help until Sunday but on Monday I will be discharged. No 4-6 week support, just one week. No antidepressants, no PRN haloperidol, no plan for the breakthrough psychosis. No acknowledgement of my depression.

The BPD label seems like a terrible one to have. I’ve been told now I have been diagnosed with BPD I have to take more responsibility for my actions and stop making bad decisions, which were previously put down to symptoms of bipolar. Now I’m just seen as being reckless. So I will only see the psychiatrist every 3 months instead of every 6-8 weeks, and only see my care coordinator once per week instead of twice per week.

I feel like my care has fallen apart. When I just had a PP/Bipolar diagnosis everyone was so kind. When I spent all my money and made impulsive decisions alarm bells went off and my mh team helped me to realise this was a sign of mania/psychosis and get me help. Now I’m just seen as making poor lifestyle choices. Previously everyone felt sorry for me from just getting poorly after the birth of my child, now they see me as attention seeking.

I’ve gone from being heavily medicated, which although I hated at the time, I’m hindsight can see that it worked, to being just on aripiprazole and falling apart. But I’m not allowed on any other medication.

My care coordinator is now ignoring me. I rang her four times yesterday as I was so upset and just needed to talk to her about the psychiatrist, but she didn’t return a single one of my calls. I text her, she read it, but she didn’t reply.

I feel in shock. I feel like the psychiatrist invalidated all of my experiences with PP over the last 2 years and basically said she thought it had all been stress. I don’t know how I’m going to cope with no support and no meds.

61 Replies
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Jas15
Jas15Volunteer

Hi Kats88

Sorry to hear about the recent run of events, sounds very unsettling for you, I know you said you’ve done DBT before and you don’t want to do it again, but it could be that you weren’t ready for it then and it could be worth another try, it’s annoying that there is a 12m wait list, perhaps you could some online DBT based support in the meantime?

Best wishes

Jas xx

Hannah_at_APP
Hannah_at_APPAdministrator

Hi Kats88,

I'm sorry that things are so frustrating at the moment and you feel that your experiences have been invalidated. I hope you can make contact with someone from your care team and get some support soon. Mind have some good info on BPD including info on misdiagnosis which you might find helpful - mind.org.uk/information-sup...

Take care, xx

Thanks Hannah I’ve had a look through, I’ve already asked for a second opinion and am now awaiting the appointment.

Jas DBT was not for me. It was condescending, patronising, aimed at those who self harm and things like “radical acceptance” I just can’t agree with. It was a waste of time then, and it would be now. I’m not doing it, but fortunately in 12 months this nightmare should be over and they won’t push it.

The crisis team didn’t even turn up today. I didn’t think they would, I just had a feeling.

I just want my pp label back, it sounds selfish but I want the sympathy that went with pp, the kindness and compassion shown by the mental health team. Instead of being viewed as an attention seeking manipulative emotional mess. I don’t even have the symptoms of bpd but because my husband cheated on me and left me so I’m now single that apparently means I have trouble maintaining relationships. No, I just couldn’t keep my husband faithful. It’s like a massive kick in the teeth.

Xx

Hannah_at_APP
Hannah_at_APPAdministrator

I’m sorry to hear that Kats88, can you perhaps try and contact your mental health/ crisis team another way, ask about your visits? I hope that tomorrow is better, thinking of you, xx

Dear Kats .im sorry to hear you are going through such a hard time of it right now .

Without the support that you prefer, the next 12 months will be a challenge for sure but have you thought of writing to the CMHT expressing your concerns and

asking what additional support you can have in the meantime to help manage

both day to day and crisis periods? You write so well and are so articulate ! Best of luck and take care . Deniz x

I’m writing to the crisis team asking to be discharged. I don’t see the point in being under them when they don’t want to help. They are discharging me on Monday anyway so 2 extra days won’t harm. I’m the whole week I’ve been under them I haven’t heard from my care coordinator I feel like I’m fighting a losing battle with them, and I’m struggling to cope. Xx

Ellie_at_APP
Ellie_at_APPAdministrator

Hi Kats

I'm so sorry you're going through a difficult time and the change in diagnosis must be hard to process. It's difficult having changes in your support too.

Perhaps you could look into some third sector organisations you could also receive support from, e.g. local peer support groups / organisations, such as Mind etc?

I personally found it helpful to access all the therapy and professional support that was offered, and perhaps with a different therapist, and at a different stage in your recovery, you may find DBT helpful when it is offered you?

Thinking of you,

Take care, Ellie X

It’s not so much a change in diagnosis, just another one to add to the list. I’m going to fight it though as I don’t have the symptoms.

I took a small overdose last night and forgot to bin the tablet packets and the crisis team saw them this morning and now they’re saying I’m too risky to stay at home and I have to go to hospital. So I’m just waiting to be sectioned. Again. Even though the doctor said hospital wouldn’t help me, now they’re forcing me to go. I’ve refused because I’ve got stuff on next week and was due to go in next weekend on a planned admission which they took away from me. How can they take away my planned admissions but force me to go when they feel like it?

I am meeting mind next Tuesday to find out about peer support groups in the area. And I have counselling once per week. Xx

hawii60
hawii60 in reply to Kats88

Sorry you have had such a terrible time. I looked at my back notes and found I had sepsis after birth with delirium. I was referred as a guest to a hospital by a malicious relative. My notes are based on a psychiatric. evaluation over fifty years ago, not on complications of child birth. The term used is puerperal birth fever. Many people died in Victorian times from this complication. I have lost my trust in modern day assessment, as the hormone and biology of women is ignored. There are no biological hormone markers assessment tests which correspond to perinatal mental health in pregnant women.

Lilybeth
LilybethVolunteer

Hello Kats88

I hope you are safe tonight. Please be guided by your care team as they have your best interests at heart.

Take care.

Ellie_at_APP
Ellie_at_APPAdministrator

Hi kats

I really hope you can get the support that you need and can stay safe. It’s good that you have found some possible support in your area.

Do take care

Ellie

I’m allowed to stay at home over the weekend. They are going to reassess me on Monday. I am safe though. The crisis team are discharging me on Monday so they can’t be that worried. I just have to stop taking overdoses, which I will, I haven’t bought any more tablets online, I’m trying to improve. Xx

Lilybeth
LilybethVolunteer

Hello Kats88

Good to hear that you are safe and can stay at home. I hope you have a restful sleep. Take care. xx

Hello again K. Hope you will feel better soon. You have had a difficult time and this site has so many people who have had experiences like yours. I know it might seem off the point but I was reading that people with diabetes are more likely to have mental health problems, and that women are twice as likely to have post partum depression/psychotic depression if they have diabetes. It can also take a woman's hormones up to two years to settle down, though most women's hormones settle down with six months after having a baby. You are getting the help you need - the need to trust your healthcare team is essential to make progress.

Ellie_at_APP
Ellie_at_APPAdministrator in reply to hawii60

Hi hawi and all

Thanks for your post.

From the professional advice we have there is a link between depression and diabetes, though not particularly with diabetes and postpartum psychosis.

I guess for me recovery has been about trying to focus on and creating routines that help me to feel well, which is hard to do when struggling I know.

And yes it’s important to get physical health checked regularly too, to make sure that is treated as well as mental health. Diabetes would be something that would be checked routinely if someone is unwell postnatally.

Take care

Ellie

I am lucky, I have lost 3 stone (mainly thanks to relapsing with my eating disorder) and because of the weight loss my blood sugars are almost back to normal. No need for medication anymore it is completely diet controlled now.

Still safe at home so hopefully they’ll let me stay at home tomorrow. I’m being discharged from the crisis team and back to my cmht so everyone will finally leave me alone. Xx

Nico89
Nico89 in reply to Kats88

Hi Kats,

How are you doing at the moment? I've just come across this thread and don't usually comment but I wondered if you're b12 or vit D levels have been checked recently?

I have recently found out that I have a deficiency of both due to autoimmune conditions and I believe this is what caused my psychosis 3 years ago now- they never tested my levels when I was admitted to hospital.

As you have one autoimmune condition already you are at a higher risk of having another- I have autoimmune pernicious anaemia which means I can't absorb b12 so have to have jabs and am being investigated for celiacs for digestive issues which is likely the cause of my vit D deficiency.

Interestingly, a lot of women are deficient in b12 after giving birth as baby takes it from us and b12 deficiency is strongly linked to a variety of mental illnesses as is vit D deficiency (Google it) unfortunately they are not included on standard blood screens though. Optimal level of vit D for someone with an autoimmune condition is over 100 and over 500 for b12 (can't remember the units sorry🙈) ( Uk lab range is very out of date and the range for 'normal' set scarily low so always ask Doc for the exact level)

Just thought I would mention this as no doctor or psych ever thought to check my levels, we only found out that our family can't absorb b12 because my Nan nearly died from it last year and required 2 emergency blood transfusions so they suggested others in the family be tested- found my aunt, mother and myself all to be affected. We now believe this to have been the cause of my mother's PND when she gave birth to me and depression and anxiety in later life, she is like a new woman now that she has her b12 jabs!

Best of luck, sorry for the long post, just thought it's worth mentioning incase it can help anyone else! Hope you feel better soon x

Ellie_at_APP
Ellie_at_APPAdministrator in reply to Nico89

Hi Nico, thanks so much for sharing your experience, it was really interesting to read. It shows I think that more research needs to be done about the possible causes of PP, which I think can be different for different people. It's so important that general health concerns are checked out as well, as these can have a massive impact on mental health, as you have found yourself.

Take care, Ellie

Jenny_at_APP
Jenny_at_APPAdministrator

Hi Kats

You’re doing so well with all you’re coping with, I hope things go ok today.

Thinking of you,

Jenny x

Thanks Jenny. They’re letting me stay at home until Thursday when they have a professionals meeting to decide what to do with me. Xx

Ellie_at_APP
Ellie_at_APPAdministrator

Hi kats

I am thinking of you. I hope you can get any support that you need, and that your day has been ok today.

Take care

Ellie

Thank you Ellie.

The days are hard, I am so depressed I can’t even get up. But I’m coping, by mostly staying in bed staring at the wall. I’m seeing my children tomorrow so I’m trying desperately to stay safe tonight despite the overwhelming desire to overdose and end the pain.

I’m doing my best, but I imagine I will lose all my support on Thursday. The crisis team want me to go to hospital tomorrow but I have a job interview on Friday so don’t really want to go to hospital. Maybe i’ll go at the weekend. I need to do something about my depression it’s out of control. Xx

Jenny_at_APP
Jenny_at_APPAdministrator in reply to Kats88

Hi Kats

I do hope you got some rest last night, I’m sorry the depression is so bad.

So happy to hear you’re seeing your children today, and that’s great you’ve got a job interview - really positive things :)

Take care, hope things go well today.

Jenny x

Well I didn’t see my kids, my interview went badly and overall it has been a terrible week. I am staying in bed all weekend and not moving. Xx

Jenny_at_APP
Jenny_at_APPAdministrator in reply to Kats88

I’m really sorry to hear that Kats. Take the time you need to regroup but please keep going, there’s always hope. How did the professionals meeting go on Thursday?

Take care Kats, we’re all here for you.

Jenny x

Ask for a second opinion and change your psychiatrist. Keep going until Until you get what you need.

I’m waiting on a second opinion but have had no luck yet. My gp is meant to be sorting it out. I’m really struggling, I want to go back to hospital but the crisis team want me to stay at home. I’m not coping at home xx

Jenny_at_APP
Jenny_at_APPAdministrator

Hi Kats

I’m sorry you don’t feel like you’re coping, have you spoken to anyone today? Do keep talking to your care team about how you’re feeling, have you managed to access any other local support?

Keep safe, I know the weekends must be especially hard.

Jenny x

I’ve spoken to the crisis team but they said I was better than on Wednesday when I’m not. Xx

Jenny_at_APP
Jenny_at_APPAdministrator

Are you keeping a mood diary or anything like that? If not perhaps this would help when you’re being reviewed, help show how you feel about your own progress alongside the team’s assessments? Keep talking to them, I’m sure they want to support you as best they can.

If you need to just talk to someone tonight remember the Samaritans are always there - 116 123.

Thinking of you lots.

Jenny x

I’m waiting for an ambulance to come and take me to hospital. I did something stupid, I just hope i’ll be ok. Xxx

Lilybeth
LilybethVolunteer

So very sorry to hear this Kats ...... take care and stay safe. xx

Jenny_at_APP
Jenny_at_APPAdministrator

I’m sorry to hear this too Kats, very glad you called for help x

I’m in hospital now. I wish I hadn’t called for help as they’re so busy I’ve just been left even though I urgently need fluids xx

Lilybeth
LilybethVolunteer

Hello Kats88

You're in a safe place now to get the help you need. I hope you can have a restful sleep. Take care. x

Jenny_at_APP
Jenny_at_APPAdministrator

I hope you get some rest tonight, Kats, glad you’re safe x

I wish I could. I’ve been sat outside on the pavement for 40 mins and no one has noticed. Inside I’m confined to a plastic chair at the end of a corridor. No fluids, no blood tests, nothing. I think I’m going to go home and let my body fight it off. Xx

Eventually I got seen and I begged to be admitted to the psych ward so I could get put back on meds and to be kept safe for a few days, only to have blood tests done which miraculously came back ok so I was given my marching orders. Discharged at 3am with no money and alone. I managed to get £40 out of the vashpoint so I had enough to get a taxi home and I’m now vomiting continually which I guess is my body’s way of healing.

I’m going to try one last time to get admitted tomorrow because I know that’s what I need, I need to be looked after and kept safe. If they still say no I don’t know what I’m going to do. Before the eupd diagnosis I would have been admitted without question. Now I just get sent home and told to carry on. Xx

Dear Kats. You must be exhausted after all you’ve been through . If you can find a way to discuss the longer term meds plan and the danger of sudden withdrawal of both meds and support when you are struggling , surely they will see how this precipitates crises? I hope you can rest although it difficult to do so in

Hospital .

The team there will very likely want to help you to recover and be well , and good to hear you say you wanted to get back to feel safe there , and cared for .thats a plus.

X Deniz

Hi again Kats . I hope you do manage to get back into hospital ! Just saw that you weren’t able to stay but are trying today to have an admission . If it’s impossible keep

Asking for professional help . The GP , and CMHT can’t keep ignoring your cries for help ! Take care . X

Jenny_at_APP
Jenny_at_APPAdministrator

Hi Kats

I’m sorry you didn’t get admitted. I hope you can rest and recover today.

Do keep talking to your health professionals, I hope you can find a way forward with a sufficient level of support. They will want you to be safe I’m sure.

Look after yourself, you must be exhausted x

Ellie_at_APP
Ellie_at_APPAdministrator

Hi Kats

I'm so sorry you're struggling so much the last couple of days.

I wonder if you have had a look at information on the Mind website, about EUPD? You may find this person's account of her experience particularly relevant at the moment, about what happened to her support, and how she felt when her diagnosis changed from bipolar to EUPD: mind.org.uk/information-sup...

I hope that you can find some peer support / mental health support groups in your local area as well, that may really help you?

Take care, thinking of you.

Ellie

Ellie my diagnosis is bipolar 1 with psychosis AND bpd. But I will have a read of that link anyway.

I am meeting mind tomorrow, so hopefully they will help and i’ll Be able to join the peer support group. That’s the only thing available in my area.

I am exhausted, I haven’t slept. I still can’t believe I was turned away from inpatient when I so badly need it. I need to be kept safe and just to let someone else take over for a few days, so I can let my mind rest and heal. Being at home there are so many temptations.

I’ve never been this unwell from depression. I’ve been more unwell when I’ve been psychotic but depression has just consumed me. I need to go back on meds but no one is listening to me. Xx

Ellie_at_APP
Ellie_at_APPAdministrator

Hi Kats

I do hope meeting with Mind tomorrow will be helpful. And I hope you can rest today. Is there someone you can ring to come and be with you if you don't feel safe?

I think someone suggested already, but it may help to keep a mood diary of how you are, in order to give clear information to your mental health team when you next see them, which could help in adjusting medication if you don't feel it's right?

Do take care, we are all thinking of you

Ellie X

The crisis team won’t let me go to hospital, they’ve said I’m coping at home so I can continue coping, without meds. I’m not coping. Xx

Jenny_at_APP
Jenny_at_APPAdministrator

Hi Kats

I’m sorry you feel like you’re not coping. Did you manage to meet with Mind? I hope they’ll be a good additional source of support and advice for you. There’s a lot of useful information on their website too, definitely worth a look when you feel ready.

Keep taking things a day at a time, I hope you’re managing to rest.

Jenny x

I didn’t manage to meet MIND, I was too ill to go. I took another overdose yesterday and have been throwing up all night. I’m hopefully being admitted to the psych ward tomorrow, I have already packed a bag. Xx

Jenny_at_APP
Jenny_at_APPAdministrator

I’m sorry to hear that Kats. I hope you get the support you need. Look after yourself today.

Jenny x

Hope you got through the day to a safe haven. Look after yourself - you are precious.xx

I’m in the psych ward under a section 3. They stripped my room by force and injected me to sedate me. Xx

Ellie_at_APP
Ellie_at_APPAdministrator

Hi kats

Sorry to hear you’re in hospital, though I know you wanted to be admitted to be safe. I do hope you will feel more stable with their support.

We are thinking of you. Take care

Ellie

I wanted to go informally but they put me straight on a section 3. Xx

Ellie_at_APP
Ellie_at_APPAdministrator

Hi kats it is good that you are safe, I hope you can use all the support in the hospital to get to a more stable place.

Do take care xx

I’m so bored. There’s nothing to do and I’m not allowed leave. I wish there were groups or therapy or something but it’s literally a place to keep you safe xx

HiddenThis reply has been deleted
Kats88
Kats88 in reply to Hidden

There’s literally nothing to do except watch tv. It’s beyond boring. I just want to go home. Xx

Ellie_at_APP
Ellie_at_APPAdministrator

Hi kats

Sorry there isn’t much to do in hospital. Perhaps you could ask staff if there are any activities planned?

Do take care,

Ellie x

I’ve asked, they did a quiz that lasted all of 5 mins and made some clay plates which lasted about 30 mins but otherwise it’s just tv and meal times and I can’t even eat. Xx

hawii60
hawii60 in reply to Kats88

Hi Kat joslin.org gives info on diabetes and suicidal depression and on eating disorders with diabetes sufferers. Self image and feelings of hopelessness are more frequent than in non diabetics. The glucose levels in your brain affect your metabolism and your moods. This US research which is way ahead of ours in some aspects.

Kats88
Kats88 in reply to hawii60

I can’t keep anything down. If I eat, which I try to do at least once per day, I’m either sick or have diarrhoea. It’s really frustrating. I don’t eat breakfast or lunch and try to have a sandwich or something for dinner, I can usually manage to eat the sandwich it just depends how long it stays down for. Xx

Hannah_at_APP
Hannah_at_APPAdministrator in reply to Kats88

Hi Kats88, sorry to hear that you are having difficulties keeping food down. Have you mentioned this to the staff at hospital? I know it's hard but having something is probably important, and for your meds to be effective too, if you have started them again (although of course I am no medical expert). I hope you get answers soon, take care, xx

Hannah_at_APP
Hannah_at_APPAdministrator

Hi Kats88, sorry to hear you are back in hospital and finding things tough, with little to occupy your time. When I was in hospital, I enjoyed reading, often a trashy mag as my concentration wasn’t always great, listening to music, playing around with nail varnish colours - anything to take my mind away from the days which can be long. Perhaps you could ask for any books you could access or whether there is a radio you could have for your room or similar? We are thinking of you, wishing you all the best that things will get easier soon. Xx

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