Relapse a second time 😒

Relapse a second time 😒

Sadly I've had a second relapse psychotic episode last Monday following PPP in March 2013. It came on VERY quickly despite me taking all the advice of the Crisis team and psychiatrists and the meds dose they prescribed. It was the same combination of events - stress, physical weakness and lack of sleep 😟. It involved me chucking everything black in the house out into the garden all day long (microwave, tv, kettle etc). Apparently I caused quite a mess! I think I would have thrown out my piano if I could have moved it myself! I have posted previously about my issue with the colour black during psychosis and remember others had similar issues. Luckily I have recovered REALLY quickly on a high dose of Quitiapine and have already had one of my sections removed and am out on escorted leave after a week and hope to have some home leave by the weekend (fingers crossed).

Unfortunately I'm back in the awful hospital in the UK I had phobias about returning to (this is my 3rd time on this ward in a horrible dark north facing bedroom facing a brick wall) and not much has changed - still filthy and chaotic and noisy and basic Health & Safety is a joke - when I arrived the fire blanket was missing from the communal kitchen and there are constant spills on the floor that aren't cleaned up. As always there are no psychiatrists available at a weekend and when I asked for some paracetamol the nurses are not allowed to dispense. I have a catalogue of issues that I'm collecting while I'm here as it is a disgrace. Lights and TVs are left on all night in offices & rooms - if the NHS want to save money just come and take a look here for starters! There are not even any recycling bins! For those self-employed like myself there are no facilities to work and no wifi even. There is a quiet Sanctuary room but nobody available to take you so it's a waste of space. Nurses turn a blind eye to patients smoking in the toilets, someone escaped over the fence yesterday and I even found a set of staff keys in one of the bathrooms and could technically have just let myself out through the front door! (Sorry for the rant but it's just so badly designed here and the garden has been locked for everyone now because of the escapee so it's boiling hot inside with over heating.

It's been suggested that I switch back to an ongoing monthly injection of Aripriprazole as a 'maintenance dose' long term. I've not found any medication that doesn't cause side effects (quetiapine = severe morning sedation, olanzepine = weight gain, Aripriprazole = Anhedonia and feeling like a zombie with no emotions). I really don't want to be on meds again as I worked very hard to slowly taper off Quetiapine after a year and had been drug free for 5 months. Does anyone have any experience of using regular psychological therapy to avoid long-term meds use? I had CBT before for the depression after PPP and work stress which was useful. I have done a Mindfulness Course but unfortunately had relapsed back into my old ways for a multitude of reasons. In some ways I have 'cured' my 'phobia' about this NHS hospital ward being back in here so it's not all bad and has fired up my drive to improve general mental health facilities in the UK.

I've posted a photo of the single cup available (apart from disposable plastic water cups) for hot drinks for 26 people on the mixed ward. Disgusting and makes me quite angry! A disgrace to our country.

Any advice on surviving a noisy general adult psyc ward until I can go home gratefully received!

28 Replies

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  • Hello bluestarlady

    So sorry to hear you had a relapse last week and are confined to a hospital which sounds an awful place ...... much like the general psychiatric hospital I was sectioned to but that was in the mid-70"s and I thought all the Victorian asylums had been demolished! I can well remember the dark, dingy, wards so I really feel for you.

    As my episodes were so long ago (second in 1981) there were no treatments available other than medication, which didn't work for me, so I had a few courses of ECT. I'm sure other mums here will be able to advise about medication and treatments they had.

    In spite of your surroundings you have done well to be considered for weekend leave so I hope that happens for you. It took me six months with my first PP in and out of various psychiatric units and to be honest I wasn't aware of my surroundings for a long time .... I just woke up and was in a very strange, mixed ward!! I didn't go to the communal sitting room often as there was a woman who would sit on anyone if they sat in 'her' chair. After a while I found OT a good distraction from my surroundings as it linked me to familiar things I did in the workplace. Other than that I didn't have many options, although times have changed for the better now ......except in the hospital where you are it seems.

    I'm not sure if any of this has helped but please keep writing to get all your feelings out of your head. We are all here for you to lean on and listen anytime.

    Take good care of yourself. I hope your visitors will be able to bring you some comforts from home to help you stay positive.

  • So sad to hear. I wish you all the best. For me when I have a relapse I have to be on meds for a year. I tried coming off them early once and had a really bad episode of psychosis. Its horrible I know but I just have to stay on the meds till the drs say I can come off them. I'm the same when I'm unwell...I throw everything out too. Psychology has helped me to have positive rather than negative hallucinations I feel, and to cope esp in hospital to get better quickly, but it does not cure like the medicine does.

  • Hi bluestarlady,

    I'm sorry to hear of your latest relapse and the difficulties you are facing in the general ward. Lilybeth has given you some great tips, including looking forward to the weekend leave which sounds like it will be great for you. I too spent time in a mixed general ward and would live for the times I could get out and spend time with family. Writing your thoughts down may also be helpful and I enjoyed listening to music and had a radio brought in, so I could spend time relaxing and trying to transport myself to a happier place through that.

    I'm afraid I don't have experience of psychological therapies, as I too found that it was medication and ECT that brought me round and gave my recovery the kick-start that was needed. I hope you will be able to find some good support in terms of meds, in my experience they were what worked, much as I hated it at the time.

    Have you been able to talk to your named nurse or perhaps a trusted family member or friend about your concerns, and how they can be progressed? In the meantime, I hope that you are doing OK, and just wanted to say that we are thinking of you and wishing you well. Take care, xx

  • Thank you for sharing! It does take me back to my days at the MBU last year. Like you I kept spotting things that could easily be done so much better. I really just wanted to redesign the MBU completely as the layout was not optimal.. but of course we have to work with what we have. I was mindful of how lucky I was to be there and appreciated all the good things about the MBU. But like you I couldn't understand how some things could be like they were, the plumbing was awful and the so called showers were just a joke. I am sure it wouldn't cost a leg and an arm to redo the wetrooms but of course resources are scarce in the NHS. Like me you recognise that the NHS has limited resources but point out that this is not really the issue with a lot of the problems. Some things could simply be done in a different way and easily save money making it available for other improvements! Like you I found recycling really important. There must be someone in the NHS responsible for this nationwide who one could adress? To me it seems better management is required, as each NHS employee has a task to do but things outside their specific scope of work seem to fall through the cracks.

    As for mediction and CBT and mindfulness i am not an expert, but I came off Olanzapine a year ago (I note your comment about weight gaind, i feel it made me super tired and I didn't need to sleep all the time after I stopped Olanzapine) and am almost off Lithium which I have been reducing by 100mg each month from 800mg. Now a new chapter is about to start and I have asked for psychological support but not sure how that will pan out.

    Take care and sorry this wasn't really helpful but just wanted to say that i read your post with great interest (I too had a thing about speicific colours and that would warrant an entire other post)

  • In terms of update I had a great meeting with my Consultant Psychiatrist today. I'm titrating onto Airipriprazole tonight as the sedation today has been unbearable (I slept until 10.30am) - he thinks the side effects I had when I had PPP were down to the depression afterwards rather than the medication itself. It appears a GP was potentially at fault for prescribing anti-depressants to me a couple of weeks ago (amongst many other professionals unfortunately over the last few weeks). He is going to do a PROPER care plan this time (third time lucky hopefully!) as he said you can experience brain damage with each episode of psychosis. He thinks a monthly injection of the Aripriprazole (assuming no major side effects) should protect me for life including during menopause and during my monthly cycle (which is linked apparently).

    I'm going on day leave at the end of the week and potentially overnight leave at the weekend πŸ™‚ and hopefully an escorted walk shortly (in the dark!)

    In terms of the ward - somebody jumped onto the roof of the other outside space and escaped through the park this morning before being brought back so now BOTH the outside spaces are locked for everyone so no fresh air and stuffy!

    Thanks for thinking about me. It helps a lot πŸ™‚

  • Hi bluestarlady

    I was sad to read your post, and that you have had a relapse and are in hospital again. And I'm really sorry to read that you're in a ward that sounds pretty awful. I'm glad your consultant psychiatrist seems determined to support you to stay well, and with a good care plan. I hope that has made you feel positive about your recovery and going forward. So great you have some home leave planned too.

    I just wanted to say that if you feel you have the energy to do it, that there are ways you can feed back to the ward / hospital. I only know things from the psychiatric wards close to me, so I don't know what's available where you are, but there should be something in place where you are.

    There is something called PALS (Patient Advisory Liaison Service I think it stands for) where you can speak about your concerns, and they can help you talk to the ward staff. Or they can advise you where to take your concerns. In the local hospital where I live they also have something called a Patient Viewpoint, who are actually people with lived experience of mental health, who go onto the psychiatric wards and speak to patients to get feedback / concerns etc and feed them back to the ward in a proper report. I don't know if they have something like that where you are? There should also be a complaints procedure too which should be displayed so it should be clear who you go to to make a complaint? I don't know if you have enough energy etc to write to someone with a whole list of the complaints? it sounds like there is such a lot that could be improved and they need to know it! My experience has been that things are slowly moving forward in mental health services (at least from my limited experience where I live) and that they are starting to find ways to really hear and value the 'service user' (for want of a better word) voice and feedback.

    I hope some of that might help. And I do hope you do recover well despite not being in the ideal place. Take care X

  • Thank you Ellie.

    I've had some progress in that I've moved rooms tonight off the noisy admissions corridor to a room with en-suite shower and WC πŸ™‚

    It's West facing (rather than North) so I can at least see the sun at some point (!), has better mobile reception and is more peaceful. I have everything I need from my family and feel safer.

    The en-suite wasn't cleaned before I moved which I'm going to have to do myself. I've heard horrible stories (and seen horrible self-harm wounds) from other patients so I've decided not to befriend anyone for the sake of my own sanity!

    I most definitely will be taking things up with someone when I leave here. I just haven't decided how yet for maximum impact.

    On a disappointing note my grant application to redecorate the terrible Crisis bedrooms at our local mental health hostel has been rejected but I intend to pursue that through different channels when I can.

  • Hi Bluestarlady, I hope today has been a little better for you and you got to enjoy the walk out you mentioned, in the dark! Your new room sounds more suited to your needs and it's good to hear that you have got good professional support. We are all thinking of you, take care and all the best, xx

  • Hi Hannah,

    I managed to go out escorted today in the daytime with a family member for half an hour to pick up some nice toiletries I had ordered online as a treat (click & collect). So far the titration on Aripriprazole is going OK but this is the hardest bit - taking a sedative Quetiapine at night and then having to wake up and go to the clinic room in the morning as well.

    My suggestion of organising some singing and karaoke to cheer everyone up was apparently brought up at the ward meeting on my behalf this morning. Apparently there is a karaoke machine somewhere in a cupboard but nobody knows where! The other residents are happy that the remote for the cinema room has been replaced (it was missing for a week which has upset everybody) and I've had more peace & quiet in my private room πŸ™‚ My family have had to bring in a duvet as it was so cold in my room last night that I woke at 4am and a cleaner has been requested for my shower which is disgusting. Honestly, it's like a soap opera here - you couldn't make it up!

    In terms of recovery I'm noticing that wearing my blue-light filter glasses at night is really helping as is avoiding looking at highly patterned surfaces and objects (I felt very wierd in a cafe this afternoon with spotty table cloths and couldn't look at them as they were almost hypnotic). My care co-ordinator came to see me with a very highly coloured and geometric notebook which was also not pleasant. I've had the same sensations of people stareing at me which I recall from my last two episodes. It was odd the other day when somebody stared directly into my eyes and I felt almost hypnotised and very peculiar so now I avoid direct eye contact or wear my filter glasses in the ward during mealtimes. Each day I am recovering a bit more.

    The hardest thing today was hearing my little 3.5 yo say he didn't want to talk to mummy on the phone. When he did come to speak he sounded really distressed and confused and asked me when I was coming home. 😒 I told him I'd be home in 2 sleeps on Saturday. I've also realised that I became psychotic on World Mental Health Day - 10th October- which will be a date to remember.

    My fiancΓ© is at a Carers meeting tonight here at the hospital which is positive as he is really struggling at the moment - he's had to take 2 weeks off work and is not used to having to shop for nursery all-in-ones and clean up wee spills all day!

    Thanks for your support

    X

  • Thanks for the update bluestarlady, it sounds like some good things from today, like the walk and carers meeting (& the shower going to be cleaned, I still recall the grim bathroom I had, no shower and I am not a fan of baths!)

    I'm sorry to hear it was hard speaking with your son. I guess all I can say is that children are really remarkably resilient. I hope you get lots of lovely big hugs together at the weekend.

    I too really relate to the dates thing you mention, in fact this time of year is always a bit weird for me as I "lost" October the year my son was born and can barely remember anything. It makes me sad in a way but as with everything, time is such a great healer. I'm thankful for all the wonderful memories in the intervening years, and from different times of the year too.

    And you too will have this, I am sure. It sounds as if you are making good progress and I will keep you in my thoughts. Take care, all the best, xx

  • Hello bluestarlady,

    my thoughts are with you...

    when I moved from room to room or ward to ward, there was always a purpose behind it. As soon as the rooms improved in lay out, style and hygiene, especially with en-suite, and when I have had the occasional light moments of awareness I somehow knew that there was hope of getting out of this miserable psychiatric mixed gender unit.

    Reading your account certainly creates some flash backs in my mind, although I was pretty much 'stoned' and often did not recognise my partner. The conditions and mistakes being made were catastrophically. Luckily my partner fought with diplomacy and intelligence and conning strategies in order to evidence negligence and physical abuse towards me.

    The medication I took and the excellent after care, because of my partner and the implemented support network via my care co-ordinator helped me to improve my health physically and mentally.

    I am so happy that you have the strengths to report back to this forum. Your voice is being heard, which is of great importance.

    It is sad that this is still happening in 2016. My experience was in 2010...

    Sending you all my love and keep recording.

    Sabine

  • Hi bluestarlady

    It was good to hear your update. It is good to hear you have your own room now which sounds a lot better, though not ideal. And well done for managing a trip out. I remember when not well feeling so overwhelmed with crowds etc. And it's good you're doing things such as wearing glasses that help you with the patterns you find overwhelming. It sounds like you are being amazing trying to improve the place for you and the other patients even amidst being ill. Do take care of yourself though, and focus on getting well too (which sounds like you are).

    That must have been so hard to hear your son and that he sounded quite confused. I hope you are OK. It sounds like you're really actively doing everything you can to recover and I'm sure you'll be home soon with your family. It's good that your fiance is going to the carers meeting at the hospital, I hope he'll find that supportive.

    Thinking of you XX

  • Thank you ladies. Apparently after I did speak with my son last night he was really happy and went to bed like a lamb πŸ™‚

    I'm currently trying to help my partner with a re-mortgage application which is not easy without access to my files and paperwork and under Quetiapine sedation! He is very stressed and snappy too and shouted at me on the phone. The timing is terrible!

    X

  • Hello bluestarlady

    I hope you have a lovely relaxing time when you go home tomorrow. I'm sure you will have lots of hugs from your son and probably your partner won't be so stressed when you are together at home. I think we sometimes forget how hard it is for our other halves to cope when their routines have been turned upside down too.

    One more sleep ........ take care x

  • Thanks Lilybeth,

    The mortgage offer has been sorted πŸ™‚, I'm dropping my MASSIVELY sedating Quetiapine to 200mg tonight (was on 600mg), and looking forward to my day out and hopefully the same on Sunday. I'm looking forward to kisses and cuddles from my family, seeing my home which apparently has been tidied and cleaned for my return, and simple play doh games and a beauty treatment at a lovely salon πŸ™‚. My cancer op is next Thursday at a specialist hospital in London which I'm going to even under section which is good and may be on home overnight leave (fingers crossed).

    Somehow I'm the official organiser of ward karaoke next week which makes me popular with the other patients (who are becoming more bearable) but less so with the staff! The food is still terrible though and I've lost 2lb in less than 2 weeks (a nice side effect though!)

    X

  • I've only just reduced my queitapine to 200mg & im well πŸ™ˆ (Been on it since April 2014) crazy I've had to reduce it myself as no psychiatrist anymore - it nocks me out too... I'm sure you will notice the difference but .... just stay well, sometimes it's worth putting up with the tiredness to stay well x

    I'm so sorry to hear your in hospital - one stay on at mixed ward i was ok in retrospect but a woman's ward similar to your experience so I feel your pain - your photo sadly sums it up. Your little boy will love having you home & you will pick up your routine together with lots of cuddles when your fully recovered and home. You will get home soon & you'll appreciate it all the more xxx

  • Hello bluestarlady

    That's a good sign that your medication is being reduced in time for your home leave. I hope everything goes well with your op next Thursday ..... I think you're amazing with everything you are having to face at the moment.

    I was the same at first, being worried about the other patients in the ward. As time went on though I did settle and built a few uneasy friendships .... my illness was temporary and I would eventually go home, whereas some women and men I met had no such hope.

    I'm sure you're looking forward to all the comforts of home, not least all the loving hugs. Enjoy ......

  • Hello bluestarlady

    I hope you had a lovely weekend on leave and that you are settling in again .... also that the happy memories will lift your spirits to cope in such a challenging environment.

    Take care ..... I'm sure karaoke on the ward will be a big hit! x

  • Hi Lilybeth,

    I'm discharged from my section, have been home over a week and am doing well thanks.

    I've had my Aripriprazole 'depo' which is a monthly injection and so far no side effects as before - my psychiatrist put down to the depression after PPP rather than the Aripriprazole itself. I'm having to take Zopiclone for sleep (am am being woken nightly by my 3yo) but my energy levels are returning slowly πŸ™‚

    Since coming home I've done a MAJOR de cluttering and sorting of baby & toddler stuff piling up everywhere plus my clothes etc so the house is more calming and less stressful and my partner has done some jobs too to help me out on his compassionate leave (he's now back to work after 3 weeks and we had some lovely flowers from them!).

    I've got family around helping (bossing me into relaxing!), my son is at nursery full time to help out for a few weeks and my free bus pass comes shortly (I discovered hardly anyone on the ward knew you were entitled to this!). I made friends and professional network contacts on the ward and they've asked me to write a feedback report. I'm going to wait for that as it winds me up too much!

    I've a review back at the hospital tomorrow. Hoping for a discharge!

    Thanks for thinking of me. You helped keep me sane!

    S x

  • Hello bluestarlady,

    Lovely to hear your update that you are home and doing well. It sounds as though you are having great family support and I hope you will be discharged after your hospital review tomorrow.

    Carry on with the relaxing ..... doing a bit and leaving a bit is good :)

    We are all with you .... x

  • Hi bluestarlady

    This is great to hear you're back home with good support. And how wonderful you made connections on the ward... sounds like you made a big difference when you were there.

    I find decluttering really helpful too... hard to stay on top of though!

    I hope you find the right head space to write that feedback, sounds like it's desperately needed...

    I hope you continue to settle back in at home x

  • Hi bluestarlady,

    Thanks for your latest updates, I hope too that your weekend went well. And great to hear about the karaoke too, sounds like fun! I also wanted to say all the best for your cancer op, we will all be thinking of you and wishing you well. Take care, xx

  • Hi bluestarlady it's great you have so.e home leave planned... Can't belie you're facing a cancer op I hope it all goes well... You're an amazing woman, trying to improve things for everyone on the ward... I do hope the karaoke goes well!!

    Take care and thinking of you xx

  • Hello bluestarlady

    I hope your operation went well and you are recovering. Are you still having input from your Consultant Psychiatrist who seemed helpful?

    We're all thinking of you. Take very good care of yourself.

  • You will be pleased to hear that I was discharged last week after an extended stay at home πŸ™‚ I'm still under the care of the crisis team but doing REALLY well, sleeping much better without ANY meds at all, still have that horrible anxiety that persists for a while but can cope with half a tablet of Clonazepam or herbal Nytol/ Kalms.

    I've been given the contact details for Your Voice In Action which is a local group to improve mental health facilities so will see where I get with that.

    I've also been told I can drive πŸ˜€ as I don't have any side effects from my Aripriprazole monthly injection. Hurrah!!

    Love to everybody xx

  • Dear Bluestarlady,

    you have been on a very long journey and such a difficult one. Thank you for sharing your ups and downs on this forum. Believe it or not, I think you are a true inspiration, because I know you will defeat all the obstacles & already passing on your willpower to other females in need, because you are journalising and sharing your experience! Bravo :-)

    I feel at a much better place now I found likeminded women, who have had a multitude of traumatic experiences and I am so happy that this forum does exist!

    You've got great courage...

    Thing of you.

    Look after yourself.

    Sabine

  • Thanks Sabine,

    Indeed, I'm very happy too that this forum exists as it has certainly helped me in my recovery to know there are other Mums out there that have been through the same thing.

    Because I've had two relapses within 4 years I've been diagnosed now with Schizoaffective Disorder - I think it's because I don't have bi-polar but have relapsed twice because of a the toxic combination of stress, lack of sleep and physical weakness. I was told there was a 'mood' element which I think is a lot of nonsense as nobody can give me any concrete evidence. My other diagnosis was Acute and Transient Psychotic Episode.

    I'd be interested in knowing whether any other Mums have gone on to be diagnosed with this Schizoaffective Disorder following a relapse and if there is anything I need to know or be aware of?

    x

  • Hello Bluestarlady

    I hope you are well and enjoying all the comforts of home. It's good to hear you're sleeping much better. I'm glad the forum has helped you ..... it's such a great space to find support and virtual friendships :)

    I relapsed after my second PP. I've looked at my notes as I have gaps in my memory of what happened. I wasn't diagnosed with Schizoaffective Disorder so I'm sorry I can't help with anything you might need to know or be aware of.

    Take good care of yourself x

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