Hi. I’m Ami. — Scope | Disability forum
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Hi. I’m Ami.

Ami_Iris Member Posts: 5 Listener
Hi. I’m a bit lost. I’m not even sure what to say. 
I’m Ami. I’m 42. I don’t even know... Maybe if I start...
I used to be a lot more...never optimistic but trying to be a realist used to feel better. 
I’ve always had problems and when I was 15, after my mum died, I developed Schizophrenia. I was diagnosed at 18 and once I got on the right medication, it was usually easy to keep under control. Over time I’d have to deal with ever increasing social anxieties. There was also a suspicion of ASD raised in the last year or two, although they stopped pursuing it. I remember doing a test, QT50 I think they called it and then nothing after. Apparently I asked them to drop it but it was news to me. There’s also, at the same time, been raised a separate need for psychological help but again, I supposedly asked them to drop it. 
I’m feeling so lost now though. 
I’ve never been the popular person and I’ve always been happy with that. But I was taught in my late teens to depend on others; that I couldn’t depend on myself and it didn’t take long to realise that my health workers were the only ones I could depend on. But even that ended in 2004, as hard as it was to accept it. From 2005, my care was nothing more than diary keeping. I told my doctor once that I really wished I could end it all and he just smiled and told me to come back when I was feeling better. My daughter was to be my only source of strength in that time, until I lost her. The court case for access was quite possibly the only time I was able to willingly push myself into a conflict of more than a part of a day but that was how much she meant to me. Contact with her was a vague cycle of one to three hours every two or three weeks until the other one next broke the court order. Time with her would make me feel invulnerable but the longer we were separate, the more I wore down. The case ended, according to my solicitor, with a win but even as she said it, I knew a court order that was dependant on the other person’s permission wasn’t a win. 
The next town I lived in, from 2010, the doctors got worse. I can’t even say how but when I moved to where I am now, it looked as though this town was better, maybe closer to pre-2005. But it didn’t last and I’ve had to split from the NHS entirely because I can’t cope with it anymore. I saw them getting worse, I realised I wasn’t a person to them, and it scared me because I don’t want a repeat of my last town. Thing is, it’s meant I’ve got no one at all now. I’m having to try and sort my medicines through alternative means and...
I think I’m kind of lucky in that the local area is...I can still walk around there as long as I’m confident I don’t have to deal with anyone. I can still enjoy a coffee in Costa as long as there’s no risk of someone wanting to share a table. I can even talk a little with the staff while I’m waiting. I know that, with no doctors, I’m going to fail the next DWP assessment, and ready or not, Costa makes the most sense as a possible way to carry on, although it’s terrifying too. But as far as being in one location away from home, I think Costa is the closest I have to a chance of coping. I certainly don’t have any prospects in the rest of the town. It makes me panicky to think of going out of my local area. Even in my local area, I get scared of talking to people. I couldn’t entertain the idea of friendships. I keep a Facebook but only because of 3rd party logins. It’s good for stress relief though and I can hide everything I write. I’m okay on another site. I sometimes write articles and I can respond and I feel a lot safer because no more than 3 articles/responses a day means I can’t get drawn in to conversations I end up regretting. 
But my housing officer doesn’t like it. She’s constantly telling me she wants me to join local clubs, despite how often I’ve felt alienated in them. She’s happy I’m thinking of work but she wants me to do yet another program first that’ll take years I don’t have to make sure I’m ready. 
And yeah. 
I’m going to stop here because... I’m sorry. 


  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    edited November 2019
    Hello @Ami_Iris   Pleased to meet you.
    Thank you for joining and sharing. Please do not apologise for saying sorry this never ever your fault.
    Understand a lot of what your saying. Please if I can add your not alone. You have come to the right place.
    I am one of the team of community champions. We guide, advise and help members of our community.
    Please if you would consider looking a these links. This might help and give you a lot of support.
    You mentioned mental health anxieties and other associated issues.
    I have myself mental health and a disability. Used these organisations.
    The last one may be useful to you. Unfortunately there are Doctors medical professionals who do not and wish to never help or support those with mental health issues. Spent a lot of my life getting short shift.
    Used RETHINK. 
    An advocate service. Please if I can explain what they do is represent you speak on your behalf to any medical professional connected with your care. Ask any questions.
    All mental health charities offer floating support, well being and support with any thing such as benefits or employment issues.
    One point I must stress to you. Please think about what do you need from any service that you might apply to.
    There all have plans, aims goals that they expect you to comply with as part of your recovery.
    One the point in any service the staff will help you find your path but you have to help your self. This one thing I learnt sorry to add.
    The staff are not there to run your life for you. I know you need self esteem and confidence back, think about volunteering. I used volunteering to help me.
    Please have a look at your local county council website. Community Unit.
    My ideas would be write down what you think you want and make it short and simple. Then if you contact any of the above they have an idea.
    How to help you and give their support.
    Please can I add one other point might be of interest. I have had this myself in my own personal circumstances. 
    Every one has anxieties, self doubt problems feeling lost. I am in my middle fifties had a lot of health issues including addiction .  Have my faith.
    Found my path and support members like yourself. Life is very short.
     I can feel you not happy with anything. Please can just say make a list of achievements things you wish to do and obtain.
    I retrained in my early Forties after a life time of admin qualifications dead end jobs. Set up a business.  When that folded made me ill.  Became an alcoholic So got help from any of those charities . I have listed. Had to go to rehab took me 18 months to come off.  After thirty years of being one.
    Make a list also of your skills, abilities and talents. Think where any leads or opportunities could come from to make your happy, content.
    Even hobbies, interests. I like cooking use this forum for recipes. Had volunteered in kitchens.
    Please think about what motivates you keeps your heart going.
    I had a time in my life surrounded by I thought friend's in reality . They were hangers on used me as door mat . Do I need them, had suicidal thoughts is it worth it.
    Got my self sorted with addiction. Been clean twelve years, got rid of those people. Last one a few months ago.
    Lost the car Government changed my benefits, found this forum. Do a lot on line my support and asked for help every one who was a friend cut me off so did the same.
    Best thing ever. On here best friends many of them love  them lot.
    Please if I can help with anything further please ask me. I offer friendship, compassion and empathy. Your not the problem.
    I am sorry long post. I just wanted to explain have walked a mile in your shoes.
    Pleasure to meet you.
    Please keep safe and warm, keep in touch.
    Understand this your a valued member of our community.  Two sayings taught to me by support workers. If you put a stone in your path. Do you stop still or do you go around and carry on. Success comes in cans not can nots.
    Please take care.
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • Ami_Iris
    Ami_Iris Member Posts: 5 Listener
    Thank you. I do have some experience with Rethink, although very different. They used to run a hostel in one of my past cities, pre-2005. Maybe still do. I could ask them. Thank you. 
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @Ami_Iris   Thank you for reply. Wanted to add I know given you a lot ot look at.
    I hope this is helpful.
    At the moment life is painful and difficult to cope with. Please take it slowly make some plans.
    I am not a patronising person that you know yourself than any one.
    Think carefully of what you would consider looking at. No problem at all of them the links provided.
    I had council services and the one listed charity working together to help me, more support and advice you can get.
    Learn and educate yourself. Your an intelligent person you know that and yes it is fine to some one to dictate to you. Say that you need to join clubs or societies.
    Not for every one, a variety of interests, hobbies and volunteering meant I had a vast networks of people. Now happy be here supporting you, realised the truth.
    I can not connect with those in social groups not easy.
    I can and do understand everything your saying.
    Please take care, if I can help please contact me.

    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Hi @Ami_Iris and welcome to the community! Thank you for opening up to us and please don't feel that you need to apologise, you have nothing to apologise for! How are you feeling today?
    Disability Gamechanger - 2019
  • Ami_Iris
    Ami_Iris Member Posts: 5 Listener
    Better than last night. Been keeping busy. It’s kind of one good thing about day times these days is there’s a lot of pieces to pick up and even without being the most important, I find picking up the pieces in terms of the effect on my home can be pretty mood lifting; mostly because I’ve never been able to before, whether because of demotivation or because of so many obligations to other people; medical staff mostly. Past few months though, as lonely as I’ve been, I do feel grateful I’ve been able to focus on solutions again. 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @Ami_Iris - Welcome to this very caring & supportive community. I hope the advice is helpful & that perhaps Rethink would be a good place to start, as you say.
    I thought you wrote most poignantly, so please don't say you're sorry. You gave us a window through which we could see what your life is like, & for that I'd like to thank you.
  • Ami_Iris
    Ami_Iris Member Posts: 5 Listener
    Thank you. I did have a look at the rethink site but apparently the nearest one to here is too far according to the site. I can understand why but I might try Mind instead. Thank you though. I really appreciate it. 
  • Tammyjane33
    Tammyjane33 Member Posts: 761 Pioneering
    @thespiceman amazing feed back as always. 
  • Adrian_Scope
    Adrian_Scope Posts: 8,553

    Scope community team

    Hi @Ami_Iris. How are you doing today?
    You've given us a real sense of how much you're struggling through your writing, so please never apologise for expressing yourself. It's always better to be honest and candid.
    In terms of looking for work, we have a range of free employment services available here, so please don't feel you only have the one option, as there will be other things out there that might work for you too. If you do end up failing your assessment, we can also try to advise you if you choose to appeal it.
    Community Manager

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  • Ami_Iris
    Ami_Iris Member Posts: 5 Listener
    Hi. I’m sorry it’s been a little while. There’s been a bit of an update to my life and I’m okay with it. Seems my body has decided to do something about the problems. I didn’t want to say anything until I was sure but I’m pretty sure now. Obviously, I’m not a medical professional so I can only go by what Google says, which is never much but if I’m reading right, I’m getting symptoms of malabsorption and 7/9 of the indicators of predicted heart issues. I swear it’s not anything I’ve done - I’ve no intention of doing anything illegal - and I know I shouldn’t be happy about it but, for me, the price of seeing a doctor about it is too high; too harmful. I’m not expecting it to be anything close to pain free, especially with some of what I’m already getting. But, I need this. I can’t explain it properly but we all die eventually and for me what’s important is that when I die, it’s me that dies; not some shell. I can’t be their play dough anymore. 
    I really hope you can understand and I won’t be upset if you don’t. I know you said not to apologise but, at least, if anyone takes issue with what I’ve said then I am sorry but I won’t change my mind either. 

  • poppy123456
    poppy123456 Member Posts: 28,417 Disability Gamechanger
    Hello and welcome.

    I'm one of the community champions here on scope and i advise and support other members.

    If you're experiencing health issues then i'd advise you to speak to your GP and not rely on google searching because what you're reading on google may not be what you're experiencing, even if it sounds like that's what it maybe.

    I'm not a medical professional so am unable to give you any medical advice but speaking from past experience my advice is to never google search your symptoms because more often than not you're very likely to be wrong. Many conditions mimic other conditions, which is why you should seek professional medical advice.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @Ami_Iris - It seems to me that perhaps you're feeling different in some way; feeling that your body is letting you down, perhaps. I can only agree with Poppy, & this comes from a different view point. I do have some understanding of medical research, which has helped my family & others. I have relied upon medical databases, not Google, which unfortunately often misinforms. When I've researched, I've not looked at one medical paper, but many to gain a proper unbiased viewpoint, as just one medical paper's results may also misinform.
    Again, as Poppy says, many symptoms are found in several different conditions, so need evaluating by your GP, with appropriate referrals if needed. If you've found a change in your body, it needs looking into.
    I think we all feel that we want to be who we are, & are probably scared of losing our faculties, but I'd rather see a Dr to discuss this with personally to see what help is available, rather than not.

  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @Ami_Iris   Sorry to hear your still having some problems.

    Please can I ask did you ever contact any of the links, I provided for you.

    Please if I suggest you do, there several reasons you should first often many charities have meetings, support groups.

    Where discussing health issues under the guidance of a professional.

    This can be some one from a medical professional discussing many aspects of issues.

    Connected to mental health, an addiction specialist or drug councillor or some one from an welfare organisations.

    Have been important discussions, effects of mental health many symptoms mask other conditions.

    One being anxiety get chest pains, palpitations, sweats, pains in arms. All perfectly reminders of anxiety.

    Although some sense be a heart attack.

    Second reason they often discuss ways to cope with your health issues, coping methods, strategies, sleep medications and much more.

    There are always conflicting reports, discussions, debates on any of the websites.

    This is good know to use this or need this.

    Most health stories are a marketing ploy originated in the Fifties.

    Drug companies, other healthy deemed foods.

    Word of warning might seem a good idea, using the web.

    Unless your know you got the knowledge or experience or qualifications might be making yourself more ill.

    My friend @chiarieds and myself have a lot of experience, knowledge and qualifications in health.

    I have met those who have followed my interest in herbs and spices with all these things many can be harmful to health in large doses.

    Dr.Google is not the answer the solutions are to seek the help of those organisations, charities use their learning, teaching in a safe secure environment to educate you.

    One other point with any mental health diet, nutrition is vital. Any mental health issues involve missed meals or inadequate food intake.

    This can bring on headaches, bloated, stomach pains and the fears of insecurities of thinking negative.

    Thinking negative, uncertain paranoid thoughts part of any mental illness.

    To reassure you need to use RETHINK if you having problems with the Doctor.

    Please I hope you do understand it always a good idea to seek any help you can.

    Please if I can help with anything wish to ask any questions happy to be answering.


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.


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