And breathe...

Hello, I am totally new to chatting in forums so hello.  I  wanted to talk to people here to try to understand myself and what I am going through.....if I can.  

I have been fighting the nhs system for years to try to get help for myself, it just seems every time I have asked for help from any health care professional doors are slammed in my face or I am not taken seriously.

i will try to explain.....

I should say I am now 45 and feel so alone, frustrated, confused, anxious and stressed about this is now beyond a joke. I do have a diagnosis of dyslexia, dyspraxia and dyscalculia and it's always thought I had something else going on.  All the way my life even childhood i have felt different, struggled to fit in.  I don't cope well around people, I don't know how to act or talk around them.  I guess over the years I have learned to copy people and how to act? I have always been the person on their own, doing things on their own....as if looking through a window on everyone.  I spent practically all my childhood being obsessed with horse riding, I did it before and after school, even lived in my riding clothes, I would not take them off.  Others though me strange and I was bullied a lot.  growing up I found hard, it's almost like I had no idea how to do things, people made jokes, I don't get them at all.  But over time I learnt to laugh when others do...just to fit in.  I am married, I have the most understand husband ever.  I don't like to be touched, it makes me feel really uncomfortable, it's literally freaks me out where as I shout in an uncontrollable manor and even have been known to throw things.  I cannot control this at all and have no idea when in happens.  It really stresses me out and I often end up in tears apologising to people, even though I don't know what I have done.  something else, I don't understand people in general, their facial expressions, body movements.... I have been told I have face blindness? Like I say I just don't get people.  

Finally after having to move doctors surgery recently for the last one being unhelpful  and  understandping due to me shouting when frustrated I was accused of being aggressive and intimidating.  Omg, that is the last thing and this notified me where I was left feeling hurt and really upset enough not to want to leave the house.  So having changed Drs surgery now the new ones are more helpful and understand and want to help.  So I was referred to a mental health lady and I recently had that appointment.  My daughter (21) came with me and helped me explain things as she i feel understands me.  The mental health lady did not understand me and all she was interested in doing was to fill me with anti depressants and send me to anger management... Well I almost lost the plot as this is a classic example of someone really not listening to me...or understanding me.  i was so overwhelmed that I was crying so much I could not breathe.  My daughter tried to explain and said its been mentioned before that I may be on the autism spectrum.... With that the lady said oh that's not me fill this form in and I will refer you! Why do mental health officials not have a broader range of knowledge or know or understand maybe key things to suggest other things? I left that appointmen feeling so upset and drained all I wanted to do was scream.  Unfortunately I tend to repeat things going around and around in my head so my daughter had to listen to me going on and on about this for hours as I needed to get it out of my head.  

Now I have to wait for the referral to be tested and diagnosed.... Waiting frustrated me, I just wanted to share my story in hope someone out there going through the same feels less alone...like me. And if anyone can share what happens next that would be great and maybe stop me thinking about possible outcomeS! Also what kind of help is out there? 

thank you, and sorry it's so long.

Parents
  • I think the most frustrating thing for me is when I am talking to Drs or professional people it's as if they do t know what to do with me, they keep saying and how do you want me to help you.  How do I know? I don't know what help there is or what they can do.... Then as they don't know I get pushed about to another dept.  I have no patience and just feels like I am getting fobbed off all the time.  I am literally screaming for someone to help me but no one listens...what do I have to do??

    i mean I am not sure what a diagnosis is going to do for me.... Maybe when I am out people know what autism and Aspergers is so it will be helpful there if I am having a bad day.  It just seems never ending to me.

    i am finding now I don't want to talk as everything I do people are taking me the wrong way... I feel really upset about this and feel I am not understood at all.  to the point where I don't want to go out near people now. 

    I am in Sussex and I have a social worker....she tells me that adult services here are overloaded and basically taken up for the elderly! Being 45 it's difficult as I I have other health needs and cannot get help for that either due to my age! Cutting a long story short I have been bed bound for 16 months, been told i need a new left knee as it's had it! They won't give me one due to my age! Ha ha As I will need maybe 3 new knees in my life time and it's too dangerous...see I take blood thinner injections due to getting blood clots on my lungs when I was bed bound. It's just too dangerous so I cannot walk, don't go out much only when I have to.  I was going swimming at David lloyd pool but don't want to go back there as feel like I can't talk there, some one made a complaint and said something I did not do.  My daughter is always with me and says I never did anything wrong... I am feeling victimised and I am really upset. 

    Never a dull moment here!  Hmmmm got side tracked there, sorry I do that a lot.

Reply
  • I think the most frustrating thing for me is when I am talking to Drs or professional people it's as if they do t know what to do with me, they keep saying and how do you want me to help you.  How do I know? I don't know what help there is or what they can do.... Then as they don't know I get pushed about to another dept.  I have no patience and just feels like I am getting fobbed off all the time.  I am literally screaming for someone to help me but no one listens...what do I have to do??

    i mean I am not sure what a diagnosis is going to do for me.... Maybe when I am out people know what autism and Aspergers is so it will be helpful there if I am having a bad day.  It just seems never ending to me.

    i am finding now I don't want to talk as everything I do people are taking me the wrong way... I feel really upset about this and feel I am not understood at all.  to the point where I don't want to go out near people now. 

    I am in Sussex and I have a social worker....she tells me that adult services here are overloaded and basically taken up for the elderly! Being 45 it's difficult as I I have other health needs and cannot get help for that either due to my age! Cutting a long story short I have been bed bound for 16 months, been told i need a new left knee as it's had it! They won't give me one due to my age! Ha ha As I will need maybe 3 new knees in my life time and it's too dangerous...see I take blood thinner injections due to getting blood clots on my lungs when I was bed bound. It's just too dangerous so I cannot walk, don't go out much only when I have to.  I was going swimming at David lloyd pool but don't want to go back there as feel like I can't talk there, some one made a complaint and said something I did not do.  My daughter is always with me and says I never did anything wrong... I am feeling victimised and I am really upset. 

    Never a dull moment here!  Hmmmm got side tracked there, sorry I do that a lot.

Children
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