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SoS
Contributor

We all need a little hope

Hi there


First time poster here so please be kind, let me share my story with you so you understand why I am here and reaching out for support. So here I go...

 

My 19yo daughter suffers from schizo-affective disorder and I am her biggest support and carer as well as being her mum. What is schizo-affective disorder you may ask, well it is a combination of bi-polar and schizophrenia. So in one neat little (or not so neat) bundle she swings from being depressed (at times suicidal) to being manic as well as having psychosis. As her carer, I am utterly exhausted. As her mother I am overwhelmed and emotional as I process all that she is going through. There is so much more to this story but this is just a start.

 

Why am I posting today, well I am reaching out to others in this community who may be in a similar position as I am in need of support but also hope. I need stories of hope that my daughter will come out the other side of this and be able to start living the life she deserves to live. I also need to hear stories of others in a similar position to me, I need to feel that I’m not alone in this journey and that there are others out there that understand what this is like. No judgement, no criticism, just hope, I need to feel some hope that we can get through this in one piece and that life will get better.


Thanks for taking the time to read my post

12 REPLIES 12
Former-Member
Not applicable

Re: We all need a little hope

@SoS 

I am a great believer that we can live well in spite of a mental diagnosis. My husband (BPii - but plenty of other "diagnosis hypotheses" along the way) has not had psychosis or suicidal thoughts for over 4 years since he was put on the right meds for him.  He still has struggles but life is heaps better.

 

Re: We all need a little hope

@Former-Member Thank you, reading that made me smile and gave me hope, that what I need.

 

We are still trying to find the right combo of meds for my daughter, it is such trial and error. I look forward to a time where we can settle into some kind of normal whatever that may look like for us. We've been on this roller coaster for 14 months so far and am in need of some stability. She is being discharged from hospital tomorrow morning, maybe this will be it for her, maybe stability is not far away. If I don't have hope what do I have. Thank you for reaching out to me 

Re: We all need a little hope

Hi @SoS

 

good job starting a thread - it's a nice way to keep all your updates about your situation and particular struggles in one spot - I kind of use mine a bit like an online diary sometimes - massive difference is the community responds when they can and it's always supportive 

 

my partner is always anxious and depressed and a few times a year will have a hypomanic episode where she rapid cycles between hypomania and deep depression within day - it deteriorates into loss of cognitive and motor function and can be quite frightening at times.  The hope part would be that each time we get better at spotting the signs an episode is starting and sometimes just sometimes we can avert a prolonged episode with calming responses lifestyle wise and sometimes medication dosage changes as well ... other times best I can hope for is that we go through it with support from best psychiatrist we have been able to access , a trauma therapist and we are just toying with adding a psychologist ... also for me I have the forum community here, the Sane phone helpline and I also have a therapist/counsellor for when I need it ... the hope is that through education with organisations like Sane and support from educated like minded folk in this community you have more of a chance Of getting through each day with hope of the next appointment , the next phone call, the next online exchange ... 

 

I had so many years in isolation where I hid my partners condition from everyone in my life .. I've only just started reaching out when she hit clinic land and inpatient land a few years ago now - I realised I couldn't do this alone and that I didn't have to 

 

the hope for me is the human spirit of so many beautiful kind empathetic men and women in this forum who take the time to read and respond each week - there is always a time lag as people log in different days of the week - and when you need help immediately there are always moderators who can point you in the right direction 

 

for me dealing with bipolar depression anxiety ptsd in my partner I have myself found depression and anxiety eventually crept their way into my psyche after 20+ years of being a caregiver - so self care is a huge priority and a constant learning curve - if I don't look after myself I'm no good for anyone let alone my partner or my job 😬

 

sorry rambling a bit now - happy to answer any questions or hear more of your story when you have energy to share - no rush - we are not going anywhere - in fact I have seen many of the same carers on this forum for over 6years ! So when I say no rush I mean it ... be kind and gentle to yourself and self care is number 1 - so rest up and check out some of the social spaces too for some light relief and positive energy --- Hot Chocolate Anyone ?  Is a good one and has posts most days - I'll tag you in a couple of others I like too where I tend to look and comment every now and then .. keep an eye on your notifications 🤗 and feel feee to just read and lurk or like or contribute - it's all good and you will feel different on different days - no judgement - just support in whatever that means for you on the day ! 


Im not sure who else on the forum deals with schizophrenia bipolar in tandem as far as caring goes - @Former-Member  is this something you can help out Sos with by tagging a few folk who may be more able to connect with this unique combo ?

 

 

Re: We all need a little hope

Hi @SoS and @Sophie1 

 

I'm not caring for someone with bi polar but your posts really resonated with me, I need to hang onto hope that my child will come out the other side with some sort of normal in whatever form that might be. The roller coaster we've been on for the last 4+ years just seems to be getting worse (and my child is only 16). I have become a little better at spotting the warning signs earlier, some days I miss them.... it's a juggling act for sure! Thank you for sharing 😊

Re: We all need a little hope

Hi @Cilla 

I totally hear what you are saying. Roller coaster indeed, we have also been on this journey for 4 years. It has changed direction a couple of times with her newest diagnosis being the most difficult to manage and cope with. I feel so guilty to sometimes wish she would just leave but those thoughts come when I am so overwhelmed and hitting burnout that I can't see any way out. I feel like we've been in crisis for so long now that I have no choice but do what I have to do for my daughter. The thing is that I would never go anywhere and never desert her but there are days I want to, particularly when she is being abusive towards us. 
But this morning I woke up to sunshine and I'm sitting in the sun enjoying a cup of tea. What will today bring with our daughter? I don't know. Am I a little scared what today will bring? Yes I am. That's my life at the moment 

Re: We all need a little hope

Hi @SoS ,  I'm hearing you! Like you there are days when I just want my child to leave but know of course that's not the answer.  Being able to actually say (or at least write that) is a huge thing for me, I've always felt so guilty for thinking it and have never told anyone before for fear they will not understand, fear of being judged and fear that they would wonder how a mother could possibly think like that....  beautiful day here too, going to spend some time in the sun planting up more veges (while my child is still asleep!) Great therapy 😊

Re: We all need a little hope

@Cilla 

Oh the guilt, it is crushing some days. It's really nice to know that I'm not alone in having these feelings and that I'm also not the only one who wants to escape.

 

And yep also to the fear of judgment, that is crushing too at times. Over 3 years ago I was told by my sister that all my daughters problems were my fault. Funnily enough we haven't spoken since then. It still astounds me that she felt she had to a right to pass judgement on me in what has been the fight of our lives where my daughter is concerned.

 

Another area that gives me a nervous tummy and feel like I will be judged if I say this out loud but most of the time I'm scared of my daughter, of her reactions to what her father and I need to say to her and the resulting verbal insults that get hurled at us. How did our lives end up this way, I never ever imagined that this is what life with our daughter would be like.

 

Love the idea of getting out in the garden, that is definitely great therapy and self care

Re: We all need a little hope

Hello @SoS ,

 

I have goosebumps! My 19 year old son also has schitzoeffective disorder, only recently diagnosed having originally been diagnosed with bipolar 11 and ADHD. It's been a turmoulous day so in need of sleep but stoked to have found you. I am sure we can support each other, swap stories and perhaps maybe feel "normal". Big hugs it sure is a rollercoaster. 

Re: We all need a little hope

Hi @Anastasia 

Nice to meet you. Our daughter is currently in hospital (again) and she faces more med changes. The most difficult thing we are dealing with at the moment is her anger, it's totally out of control and she has a strong need for control of everything herself Even as an inpatient in hospital she is trying to control us. My resilience has recently taken a real battering and I'm grateful for some respite but I'm also scared about the what next 

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