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Bipolar sucks

alibabi67alibabi67 Posts: 22Member Connected
Hi, I’m a newbie...be kind! I was diagnosed with bipolar 6 years ago but have admittedly suffered since being a teen. I was on antidepressants virtually my whole life and it’s no wonder they never worked when it was actually bipolar I had and not depression. Anyway I want to talk about one of my main triggers. It’s my son, who has autism. What do you do when you are the carer for your son who is one of your main triggers? I’m in week 3 of the Summer holidays and I swear I have literally had enough. I don’t even get any relief from him during term time because at the moment he is not in school full time, only half days and even then not every day. My son is high functioning and he also has PDA and living with him is like being in a violent relationship, you have to watch what you say, how you say it. He picks fights to have a meltdown, he’s rude and obnoxious. He hits and hurts his brother. It is absolutely horrendous way to live. (He can also be adorable, funny and kind but obviously that part of it isn’t a problem). I just want to get my car and drive and drive and drive.

Replies

  • EmmaBEmmaB Posts: 198Member Pioneering
    Hi alibabi76 - that sounds like a tough combination.  Looking after a disabled child is a tough, often emotional task at the best of times but more complicated when you have your own issues alongside that task.  

    Because I'm a counsellor my first thought was 'I wonder what support you have and whether you take time out for yourself?', 'Do you get any respite care for your soon?' [probably not knowing how cash strapped the authorities are] and also 'what is it in your son's behaviour that is specifically triggering you?' - my guess is that getting to the root of that might help and that might be something you could do with a counsellor?  Ideally someone who has some understanding of the issues around parenting a disabled child and some knowledge of autism...  

    The only other thing I would say that on a lot of levels your feelings are in fact very normal - I love my children [one also has the same disability as me] but I find the summer holidays are tough when you are with them 24/7!  Roll on September!  

    Hope that helps.

    Emma
  • Chloe_ScopeChloe_Scope Posts: 5,900Administrator Scope community team
    Hi @alibabi67 and a very warm welcome to the community! Thank you very much for sharing this with us all and I am sorry to hear what you are going through. The community are here to support you and listen. Do you currently have support in place for yourself? any hobbies that help you relax?
    The challenging behaviour foundation may be a good place to look at in terms of helping you manage your son's behaviour. Please do keep us updated :)
    Chloe
    Online Community Officer
  • alibabi67alibabi67 Posts: 22Member Connected
    I get zero help or support. My mother died 3 months ago and I haven’t even grieved, I simply haven’t had time. I have tried to get counselling, the NHS turned me down because I am “too complex” for them (historical child abuse, sexual abuse, abusive first marriage, difficult family relationships) and directed me to various charities to sit on more waiting lists for eternity! For example today both boys were booked into holiday club, but low and behold this morning my ASD son simply refused to go, so that 6 hours of space and time to myself that I paid £40 for went up in a puff of smoke. So I was in an ****, me and my husband ended up falling out. It’s ok for him, his world keeps turning regardless. It’s not his life that’s constantly put on hold because R refuses to leave the house. The behaviour I find difficult is R simply refusing the littlest task, speaking to me like I’m poop, I don’t deserve to be a mum, he’d rather live anywhere but here. Him hurting his brother and I guess the fact that my life is micromanaged to the last breath by him. My husbands dad is ill with cancer (terminal) and they live 3 hour drive away. My eldest (20) also has autism and is at University and I still have to do the simplest tasks for him, I have no one to talk to, I literally drag myself through each day (unless I’m on a high, which I love and begrudge having to take medication to come back down) . I don’t know where to turn. It’s not that my husband isn’t supportive because he really is, and he is very understanding of my condition but I don’t think he realises how much I have sacrificed since our son was born so he can keep working in a job he loves. As for time for me, I don’t even appear on the list! We’ve also just moved after 4 years of harrassement, including my husband being assaulted. It is just all consuming.
  • alibabi67alibabi67 Posts: 22Member Connected
    I should also add I have osteoarthritis in my knee and I am in constant pain. I need a knee replacement but they won’t give me one because I am too heavy, a combination of PCOS causing weight gain, genetics, bipolarmeds, stress eating. I applied for weight loss surgery and was denied because I am not different enough to the rest of the population. I can’t even have a bath without my husbands help by putting the bath lift in the bath for me. I use crutches to walk and have to hire a mobility scooter for days out. 
  • alibabi67alibabi67 Posts: 22Member Connected
    And, sorry I keep adding but I also have a prolapse that needs surgery, but I would need around 6 weeks recovery time and who would look after the Kids? So I have to put up with that also.
  • EmmaBEmmaB Posts: 198Member Pioneering
    HI @alibabi67

    You certainly have a lot on you plate, all that and little support - though thankfully a supportive husband to some extent.  

    It always frustrates me when the NHS say they can't provide counselling for  someone with complex needs... at the end of the day it comes down to money and knowledge [a lot of people even in the medical profession don't know enough about the effects and treatment of trauma/abuse].

    Given your background it's possible that your 'symptoms', I put this in brackets because it's possible your 'symptoms' are in fact a very normal reaction to what has happened to you in the past but has been labelled as bipolar and results in stress eating etc.  

    It could well be that you are being 'triggered' by your son as a direct result of how you were treated in the past too... 

    One route the NHS does seem to have available now for people who have experience childhood or subsequent trauma is EMDR [eye movement desensitisation and reprocessing therapy].  

    You could go to your GP and ask to be referred for this, if they've never heard of it say it's under the NICE guidelines for treatment trauma... Or if you have any available money find someone who you like [the relationship you have with a counsellor is key] locally who has had specialist EMDR training and see whether that can lift some of your load.

    This is also a very good organisation:  https://www.pods-online.org.uk
    which could put you in touch with a private EMDR counsellor?

    I hope that helps?

    Emma

  • alibabi67alibabi67 Posts: 22Member Connected
    Thanks @EmmaB unfortunately we don’t have any money, we lost our house a while back due to not being able to continue working full time and at all. Now only my husband works so there is no money anywhere. I will look into that EMDR and ask my GP about it. I have just been to the GP to be referred back to psychiatric services because this medication I am on is not working well for me. The best meds I had was quetiapine, that was the best I have ever felt when on that, but I just slept all the time. That was why I came off it and tried other meds but nothing seems to work as well as that did. Thanks for the advice.
  • thespicemanthespiceman Posts: 5,399Community champion Disability Gamechanger
    Hello @alibabi67 Pleased to meet you .Sorry what you are going through.  Understand every thing and do think there has to be an answer out there.

    You are a loving, kind, supportive parent. Coming to the end of your patience and it does all concern me. I have the admiration, the courage you have to deal with it all.

    I am just a member of the community wishing to help.

    Am here to support to listen to. I have met many people similar to you self.. You need to find some one to befriend your son.

    That could be a solution to help and assist you. Give some room for your own space and time for yourself.

    I do know the services are over burdened and underfunded. Having my self to make the choice to find what I need on line.

    Got into volunteering befriending mainly through charities. I know there are organisations out there on line and it is finding that right support and welfare for your family and your sons.

    I ended up volunteering for various charities.  Had done that for a few years or more. Met a lot of parents like yourself with similar problems and scenario's. All I could do was to offer my time and energy.

    Having given them some time to deal with what they could deal with. Nothing was easy and it is never is.

    I do know the issues also around getting counselling, therapy and the issues all around it. I had this unfortunately. Feel no one is listening. We the community are listening. I am listening. Got all these obstacles or hurdles to get the help you need.

    In an ideal world you would get help and support for the issues you have. I had an abusive childhood so have been my self knocked back so many times.

    So much so .Had enough . Problem is this country the people all around therapy counselling, are so much on a time restraint and also conveyor belt. My addiction counselling had from morning early to late at night so many people.

    That if she had a break or some one did no turn up. Then even for a few minutes on to the next one. Rang me up one time about nine for appointment half nine because some one rang in.  To cancel.

    That is the system as I found out with other therapy and yet I had to try to help myself.  I understand you cannot but you maybe need to evaluate how can I get the information, advice to benefit my family.

    You have to do this you must because no body else is going to.  Would have done long time ago but everything is changing in the self centred world sorry and sad to say but true.

    You are a proud parent but have a look on line. I understand time and all you have .Find some time to see what is available locally. I know it is hard. Never going to be easy.

    One final thing have you spoken to your GP, they should be supporting you.  

    I hope I have treated you with kindness and sensitivity. I am afraid for your well being.

    Please take care.

    Always in prayers and thoughts

    @thespiceman
  • EmmaBEmmaB Posts: 198Member Pioneering
    You should be able to get EMDR through the NHS my guess is that you will have to be patient and persistent but I'm hopeful that if you do land up with the right EMDR therapist this might be more productive than other counselling routes you have tried.  I really hope so.  I hate the idea of people not getting the right help...  If your GP plays dumb find one who knows something about EMDR... Good luck and go for it.  You sound like a very very resilient person.  Emma
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