Diagnosis. Asking for help in the rec... - Action on Postpar...

Action on Postpartum Psychosis

3,595 members2,536 posts

Diagnosis. Asking for help in the recovery process

Purpleguinea profile image
39 Replies

So, it's confirmed. I have / had PPP. There are so many thoughts and questions rattling around in my head. Do I feel reassured that it's been recognised? Guilty for how it's affected us as a family? Ashamed? I really don't know. I just know that hearing and saying it out loud is weighing heavy on me.

Now, I need to try and focus on my recovery. I believe I have moved on from the psychosis stage . What did everyone find helpful on their journey to feeling well again ?

Written by
Purpleguinea profile image
Purpleguinea
To view profiles and participate in discussions please or .
39 Replies
Pikorua profile image
PikoruaVolunteer

Hello Purpleguinea,

hi, pleased to meet you on here.

...it can feel like a roller coaster, maybe digestion time is required, professional support, therapy, therapeutic modalities...there are so many ways to work through scenarios, even if they are from the recent past or a while ago ...we are all so very different in our experience with the same traumatising illness.

Receiving a diagnosis can create all sorts of reactions emotionally, but also physically and sometimes one is so poorly, that despite diagnosis there is just no comprehension, because you are constantly in a survival mode, without many light bulb moments, as it was in my case.

I was sectioned in 2010 and recovery was extremely slow due to mis diagnosis, unreasonable behaviour and treatment by members of staff and patients. I suppose after 2 years and weaning of successfully, - I recovered from PPP.

Obviously, your situation is of a different kind, but in a sense, I can relate to it, because my symptoms throughout the years were not psychotic anymore, but I still suffered with agora and social phobia, sleeping disorder etc... finally I received a diagnosis of BP1 in 2018.

In our case, my partner and I at last had an answer, and everything was falling into place. We were gently guided and supported by a professional. For my partner it was extremely important to have a diagnosis.

I am sure there are a few women, who can relate to your story.

A healing process is such a personal journey. Eventually in 2018 I asked for my medical file, but it was extremely surreal absorbing all the information. I guess, for me personally it was much more therapeutic working towards changes for mums with PPP or helping mums with MH issues offering therapeutic art etc.

We are all learning and changing. I am not an academic anymore, but love being creative. My life is of a different kind, and I feel so extremely fortunate to have survived.

Take good care.

Purpleguinea profile image
Purpleguinea in reply to Pikorua

Thank you for your reply. Definitely need to give it all time to wink in.

I'm hopeful that I will begun to heal with time. I definitely feel like there needs to be more information readily avaliable about PPP so that women (and their families) know where to turn and can access the support they need quickly. Do you have an example of your artwork that you would like to share?

Pikorua profile image
PikoruaVolunteer in reply to Purpleguinea

Hello dear Purpleguinea,

do you like painting, too? I do not share on the forum anymore, because of trying to keep anonymous. Happy to share via private chat, if you wish to. Take good care :-)

Purpleguinea profile image
Purpleguinea in reply to Pikorua

Completely understand and respect that. I don't paint. I craft a little but wouldn't say I was any good! Haha

Rachel_at_APP profile image
Rachel_at_APPPartnerAPP

Evening Purpleguinea and welcome to the forum where you’ll find lots of supportive and caring women who’ve had PP, but also some loved ones too who’ve supported us and also been effected in their own way by this horrible illness.

I’m Rachel, and I’m part of the Peer Support team at the charity Action on Postpartum Psychosis. Congratulations on your little arrival.

I’m really sorry to hear that you’ve had PP, it can be extremely scary and worrying. I know it was for me when I was poorly in 2016.

I’m sorry your experience of having a little one has been accompanied by PP. You should feel absolutely no guilt or shame that you describe. You’ve been poorly. People often use the analogy of not feeling guilt or shame if you broke your leg, so why should you feel it when you’ve had a poorly brain. I really hope that in time, you’ll be reassured by the women’s stories here of recovery. Of women just like you and me being kind to ourselves and each other, and not holding or carrying any guilt about what happened to us.

In terms of tips for recovery. In my experience, time, rest and small steps. I was fortunate to have a very supportive family including my husband, mum and sisters who wrapped me up in cotton wool when I came home from the Mother and Baby Unit. It was hard to feel like I needed help and harder too to accept it. I hope you have some support around you? My word of advice, with hindsight, is accept ALL the help, ask for help and speak to yourself the way you would your best friend - with absolute love and kindness.

I felt exhaustion like I didn’t think was possible, so I slept / rested whenever I could. Sleep is a huge healer.

Keep taking with the professionals around you. Keep accepting their advice and support. Take your medication as you’ve been / if you’ve been prescribed it. Tell the professionals the good, the bad and the ugly. Don’t be disheartened if you feel like progress is sometimes slow. It sometimes felt like that for me. Just be gentle to yourself, remind yourself of the big picture.

Did I say, rest! Rest… again and rest. Do not try and live up to what you perceive other peoples lives are like. Most peoples homes have unwashed dishes, mess and dust. Those that don’t - most likely have a cleaner, do not have children themselves, are lying, or do not ever rest… did I say you should rest?! As much as you can with your lovely little one.

When I felt less tired, I started walking with the pram that was a great help. And something I know I’ll miss again when my youngest doesn’t need her buggy anymore! Visit baby groups if you can. Maybe take a friend if you’re feeling you need a bit of support.

In time, maybe consider counselling . It daunted me the thought of it. But at the right time it can be a huge help. It certainly helped me, to have space to cry and talk through all the baggage and guilt I felt at not starting out motherhood how I’d wanted to, or expected to.

Kindness. Love of your friends and family. And finding space to grow as a Mummy. One day, you’ll be able to tell your story to others (if you want to) and I hope your heart will be full of pride at how far you’ve come. Do write here anytime and feel you can ask questions.

APP also offers Peer Support, so if that is something you (or your partner / family) might be interested in you can read more on the website here: app-network.org/peer-support/

Take care, and know that you’re most welcome here.

Rachel x

Ps: apologies for the length of my message! I hope it helps in some small way x

Purpleguinea profile image
Purpleguinea in reply to Rachel_at_APP

Hi Rachel. Thank you for your reply. I'm glad to hear that you have recovered.

Thanks for sign posting me to the peer support (I had already reached out before you popped the link here haha)

I'm laid flat out on the sofa now , trying to rest between nursing our poorly little girl back to health too - she has a nasty viral infection, which I think she has kindly shared with Mummy too!

I definitely think counselling is a great idea once I've been able to fully process and heal. I believe you have to have a certain level of emotional strength built up before you unearth everything again .

Maria_at_APP profile image
Maria_at_APPModerator

Hi Purpleguinea,

I am sorry to read that you had a confirmed diagnosis of pp now after being initially misdiagnosed with postnatal depression. It is a lot to process in a small period of time, so it is perfectly understandable to not quite know how to feel now.

I had pp 4 years ago now after my first baby was born and it was a lot to receive my diagnosis specially as it was the first time I had heard about this illness and it sounded tremendously scary. But as my psychiatrist said at the time, what happened to you was not yours nor anyone's fault. It took me a little while to internalise this and let go of the guilt and the shame I felt. Finding this amazing group of mums who as me had gone through this illness and came back the other side was extremely empowering and broke down the stigma that I felt was attached to my experience.

Some things that helped me in my recovery was doing talking therapy with a psychologist I had started seeing at the mbu, having the space to voice some thoughts out loud do make them incredibly less frightening, and it also gave me a tool kit for future situations to which I go to every now and again.

Taking things at my own pace and knowing that I will get back to myself eventually kept me going. My family and friends were amazing at reminding me about this whenever I felt like I was threading through treacle and recovery was taking ages. Time is a massive healer, I promise you that you will feel better, and although the journey can have its ups and downs, we all get there, for sure.

Other things that helped me were some gentle regular exercise, I started doing yoga at home and I found it really perfect, specially to relax before bed time. When you feel comfortable doing so, I would also suggest trying some mum and baby exercise groups, it can be yoga, pilates, buggy fitness, I would even put baby massage in the mix. Groups that were more doing than talking I found them easier to join, my mind was more at peace when I needed to focus on my body's movements and my thoughts did not wander so much. Other mums opt for creative stuff, art, crafts, gardening, it can all be incorporated in your therapeutic kit like Pikorua mentioned above. I also did journaling for a while and that was very beneficial, it was really encouraging to start seeing that the good days came more frequently as time passed.

Finally, but not least, talking and sharing experiences with other mums who have been through it. Some experiences of pp are really difficult to relate to as an outsider, so this forum was a great outlet for me.

Take really good care, and do not feel alone, please, if there is something you would like to share or ask do let us know

Purpleguinea profile image
Purpleguinea in reply to Maria_at_APP

Hi Emi. Thank you for your reply. My little one is actually already over 1 (yes...its really taken that long to receive this diagnosis) I used to do baby massage with her but found it petrifying and believed I was hurting her. Ppp has definitely made me realise who my support network is...some of my 'friends' clearly weren't as close as I thought we were and it's made me very reluctant with opening up now so I'm thankful to have this anonymous forum to post in

I'm definitely struggling a little coming to terms with the illness, how it's affected us and if I'm doing 'enough' or 'too much' to try and recover. I'm scared that doing 'too much' means that an episode of mania is present but that I can't recognise it as that.

Maria_at_APP profile image
Maria_at_APPModerator

Hi Purpleguinea,

That is a long time to go on the wrong diagnosis, and I am really sorry you had to go through that.

I can relate very much to what you say of feeling like you are policing yourself, and it can be exhausting at times. I went through a period where I would start feeling better and I would think that meant being manic again. It helped me to start learning a bit more about what early warning signs meant for me and that gave a good deal of self awareness. The resources on the app website are really useful, I specially found I went back again to the insider guide on recovery:

app-network.org/what-is-pp/...

Take really good care

The_Wes_Anderson_Fan profile image
The_Wes_Anderson_FanVolunteer

Hi PurpleguineaFor me, the diagnosis of PP was a positive thing as it meant that I was more likely to get the right medical help and support.

Guilty? All mothers feel guilty all the time so you just have to try to put it in perspective 💗

I don't know about feeling ashamed but for me, I still feel a slight stigma about telling people, I choose who I tell.

Many things have helped my recovery and wellness. For me, the structure of a part-time job was helpful.

I get lots of sleep and exercise, I connect with friends as often as I can. You will need those around you to support you to have time to yourself.

I also love drawing, some people find spending time in nature helps.

I am so pleased to hear you are on the road to recovery. If your thoughts start racing again, please seek medical help. X

Purpleguinea profile image
Purpleguinea

Thanks for the response.

Friends wise. I'm honestly not sure who it is that I can resch out to to trust with this. I've reached out about previous struggles before and been bitten on the back side so to speak. So I'm reluctant about disclosing it to anyone. (Obviously my family know)

The_Wes_Anderson_Fan profile image
The_Wes_Anderson_FanVolunteer in reply to Purpleguinea

I have always been cautious about telling friends about my PP too. I hope your family can support you so you have some time to yourself for exercise or whatever pastime is good for your recovery.

I am sorry to hear about your workplace, it doesn't sound like a good place for you.

Purpleguinea profile image
Purpleguinea in reply to The_Wes_Anderson_Fan

It's something I need to reevaluate when I have a clearer head. I had told them all about the support I had and all my worries and concerns. We agree that a plan would be made up for my keeping in touch days and it wasn't. I spoke to HR and to the mental health first aider at work buy I think I needed more intensive intervention to be honest

The_Wes_Anderson_Fan profile image
The_Wes_Anderson_FanVolunteer in reply to Purpleguinea

Yes, take your time to reflect on everything when you are ready. Getting completely well takes it's time but nearly all of us get there eventually.

Purpleguinea profile image
Purpleguinea in reply to The_Wes_Anderson_Fan

Whilst I don't want to set a time limit, I'm also curious to know the average recovery time. Also, if there's anyone who has gone misdiagnosed for as long as I did x

The_Wes_Anderson_Fan profile image
The_Wes_Anderson_FanVolunteer in reply to Purpleguinea

I don't know the average time. I spent 3 months on an acute ward for my first episode of psychosis and had one year off work in total. Mainly because my Employer started asking questions.Once again I was on the MBU for 3 months but went back to work once my baby was 7 months old. That was my maternity leave. I think that was a quick recovery.

I was still quite fragile when I returned to work both times and I was fortunate enough to be treated kindly without telling anyone many details.

Purpleguinea profile image
Purpleguinea in reply to The_Wes_Anderson_Fan

I'm sorry that you had to go in twice. I'm hoping your experience was quite positive.

My employer is asking questions and pushing for a 'welfare' check. Whilst I still don't feel ready for this, my boss leaves soon so something needs to be done before a hand over.

The_Wes_Anderson_Fan profile image
The_Wes_Anderson_FanVolunteer in reply to Purpleguinea

I am very lucky, my personal experience has been positive. I had psychosis at age 20 and then at age 37 after childbirth.

Purpleguinea profile image
Purpleguinea in reply to The_Wes_Anderson_Fan

If you don't mind sharing, would you enlighten me to your psychosis? (Even if this is through private chat) Of course, if you don't wish to share, I respect that boundary x

The_Wes_Anderson_Fan profile image
The_Wes_Anderson_FanVolunteer in reply to Purpleguinea

I am happy to talk about my psychosis. It was manic episodes for me, losing touch with reality with grandiose ideas, imagining spies, voices, racing thoughts. I think I experienced many of the documented psychosis symptoms. For me, anti-pyschotic drugs got me well.I have managed to stay well for the last 20 years. x

Purpleguinea profile image
Purpleguinea in reply to The_Wes_Anderson_Fan

I'm so glad that you have been well for this long now!... there's hope for me yet haha

The_Wes_Anderson_Fan profile image
The_Wes_Anderson_FanVolunteer in reply to Purpleguinea

You'll get there. A sense of humour (maybe dark humour for us) helps with most things in life. Lots of love x

Pikorua profile image
PikoruaVolunteer

It is me again Purpleguinea,

I am so sorry that the diagnosis took so long. However, I am pleased it is the correct diagnosis. Even though I just gave birth to a baby, and when sectioned after 2 weeks the diagnosis was personality disorder. It is so important to get the appropriate care and meds when acutely ill with PPP.

You have had some lovely responses. This is a wonderful forum, I did not turn to anybody for a long time, I thought I was the only one on Mother Earth with this traumatising illness. Anyhow, there were a few things which helped me to move forward.

I did group therapy after 2 years, but also trusted the Educationalists at Playgroups or connected with Nursery Teachers. I am a Pedagogist myself and knew that I would be at a safe place with regards to confidentiality issues. I made friends with one mum at the time and this was plenty. Still nowadays I find group occasions extremely tiring and am much better on a one to one or max with two other people. But this is just me, having bipolar and my type of make-up :-)

What I found incredibly helpful was the one-to-one support at APP. After 5 years I found APP by chance online...and those mum volunteers were absolutely amazing. They helped me to gain more confidence and supported me with an exhibition in my local area, where I wanted to raise more awareness of PPP.

Nowadays I am much better with socialising, but deep down you just learn whom you can trust. It is quite often when I open up that others will also disclose about their MH issues. However, I have become very selective as I always need to preserve my energy as I live with my high and low waves.

Do not feel rushed, nor compare, just do it in your own pace. I am happy to share with you anything about art on private chat.

Sending you a virtual hug!

Purpleguinea profile image
Purpleguinea in reply to Pikorua

I'm hoping to be connected with peer support soon

DM_110 profile image
DM_110

Hi Purpleguinea,

I had pp last year in February and the whole thing is very fresh on my mind now.

Like everyone here has said that this condition is fully treatable and you will feel like yourself eventually. The best thing you can do is be patient with yourself and give time to the recovery process. Sleep was the best healer for me and also going back to work part time helped me immensely to connect with my older self. I allowed my parents to help me with the kids, hired a nanny to get myself rest as much as possible and although it was hard to believe that I will eventually recover I trusted the medical opinion of my doctors and the experiences of all the ladies who have been thru this illness. Please don’t lose hope and take it easy as much as possible.

Purpleguinea profile image
Purpleguinea

I'm quite an impatient person but know I need to have the same compassion for myself that I give others. I'm glad to hear that you're on the recovery road. It was actually my return to work that tipped me into my biggest episode of psychosis. I am not very anxious about any return to the same place x

DM_110 profile image
DM_110 in reply to Purpleguinea

I’m sorry to hear that your work led to an episode. Extreme stress is known to delay healing and recovery. In my case, right after my psychosis and coming back from the hospital, I went through marital stress/discord and separation. Finally got my divorce this year but it was harsh trying to recover with all the added stress! Hope you are able to cut down all the stressors around you as much as possible.

Purpleguinea profile image
Purpleguinea in reply to DM_110

Me too. I wouldnt be surprised if my partner and I separated to be honest. X

DM_110 profile image
DM_110 in reply to Purpleguinea

Please give your health priority right now over everything else. That’s what I did and the decision was worth it.

Maria_at_APP profile image
Maria_at_APPModerator

Hi Purpleguinea,

How are you doing? Sorry to pick up on the conversation between you and The_Wes_Anderson_Fan, but I wondered if your employer has explained what he means by a 'welfare' check?

Take care

Purpleguinea profile image
Purpleguinea in reply to Maria_at_APP

Hi there. I'm very up and down to be honest. Physically unwell at the moment too so finding it hard. I've asked them to go away and find out what this means. Also, asked them for an agenda so that I can prep answers because I know that, on the spot, I won't be able to readily have them avaliable x

Maria_at_APP profile image
Maria_at_APPModerator in reply to Purpleguinea

Hi Purpleguinea. I am sorry that you are feeling both physically and emotionally unwell at the moment. It sounds very hard.It is a very good idea to ask for the questions or topics in advance, you should not be made to feel uncomfortable or share anything you don't wish to.

But this can be an useful opportunity to let them know what you need to be better supported in the workplace. I found some of the resources on the mind website useful to talk about my diagnosis at work:

mind.org.uk/information-sup...

Take care, hope you start feeling better soon

Purpleguinea profile image
Purpleguinea in reply to Maria_at_APP

Is PPP classed as a disability? The rules around all of it leave me baffled. I know that mind also do a wellness action plan for employees/employers too, which may also be helpful.

Right now, I just need rest and I also need my nurse to return from sick leave please! I feel like ny progress is on halt because nobody is working through the negative thoughts with me Xx

Maria_at_APP profile image
Maria_at_APPModerator in reply to Purpleguinea

Hi Purpleguinea, oh yes, the legal language also leaves me completely confused, I shared the wrong link for mind and I am really sorry as I understand that can feel so overwhelming - I meant to send you this, apologies for that:

mind.org.uk/information-sup...

Are you currently under a perinatal mental health team? Could they offer some talking therapy for you to go over your thoughts? Apologies if you are already on the waiting list and I am just repeating something you are already aware of.

Purpleguinea profile image
Purpleguinea in reply to Maria_at_APP

Please dont apologise.

I'm with the perinatal team. My cpn has fallen ill and has been off for some time now. Despite raining this multiple times, they just don't have the capacity right now to give me a different person x

Maria_at_APP profile image
Maria_at_APPModerator in reply to Purpleguinea

Hi Purpleguinea, really difficult to be in that situation, I also hope she comes back to work soon and you can get that support back. Take care

Purpleguinea profile image
Purpleguinea

Thanks for the well wishes. Not going to lie, today I am struggling. It was when I was physically ill that the beginnings of my main psychotic episode began and a rapid decline in my mental well- being. I'm petrified of it starting all over again x

Astarlove profile image
Astarlove

How exactly are you feeling through the recovery stage?

Purpleguinea profile image
Purpleguinea

That's quite a difficult question to answer and I'm honestly not sure

You may also like...

Long recovery process.

be honest I sometimes try to forget postpartum psychosis happened to me. The frustrating thing is...

Postpartum psychosis recovery

it’s causing manic feelings and anxiety to resurface. I’m in contact with my cpn and know how to...

Is 'Catatonia' part of the healing process

gradually become muted and passive. Also, she unable to move properly. Refused to eat and shower....

Early recovery - this is brutal

six weeks on from diagnosis I feel so poorly still and so alone. My family are amazing and have...

Recovery

antipsychotics, I am just still on lithium, but I still don’t feel at all like myself. I can’t...