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LONELINESS A CRISIS

thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
edited December 2017 in Disability news
I saw on the B.B.C breakfast about loneliness.  This being a national crisis.  That it is effecting mental health and premature death.  I sat and wondering about this.  I am lonely but is this my fault.  I know reading from various comments out there in our community.  A lot of people like me.  I wish them all the love and support if I can on this forum.  My issue is this I have tried and probably tried to hard to find friends, support groups and interact with people.  I got one major barrier out the way moving away from my mother.  I have come to realise that everytime I sought friendship or joined a group to benefit my wellbeing.  She is there in the background putting obstacles  in the way.  Making out I am the problem they don't like you she once quipped not realising she had told them lies and used them against me.  Made comments that no body wishes to hear.  I know I spoke about his before and I apologise.  I know this has left me with a conscious that when I meet anybody can still and feel her being disapproving.  No matter how much therapy I have.  One other problem is when I join support groups many are not for disabled people.  That should not matter but it does as I am never accepted and treated badly.  Last time joined a mens support group the guy running it was hard to deal with.  Never met a disabled man his attitude all wrong.  Made fun and was patronising became a bully.  I found out just recently not only me.  Treated everybody like that.  I often wondered why people kept disappearing and never came back.  Is that my fault?  Same ironically with some disabled clubs I went to as well if I can remember.  I often felt every time I joined something  barrier come up.  Mental health charity who supported me they had group gathering and other events.  Team manager would come on phone saying you said this and can not do this.  I am speechless.  I know I am of an age where treading on eggshells is not the norm.  I had a great time in the charity but this was the off putting side.  Ended up being ill and support worker tried to entice me back into the fold.  I had to go being lonely then spoke about my health history and got told off.  What I exclaimed I thought what is the point.  This has been ongoing for a long time me being accepted by society.  Whether sitting making pleasant chat in a café being then shouted at and treated in a way that I am felt ashamed to be disabled.  Only want to talk then get no where.  Is that my fault?
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Replies

  • steve51steve51 Community champion Posts: 6,683 Disability Gamechanger
    Hi @thespiceman

    It’s great to meet you this afternoon/welcome.

    Yes loneliness is going to be the number one crisis to hit the human race in years to come.

    Please don’t feel that it’s your fault in anyway  !!!!!!!

    If you require any help/support/or just a chat please please let me know???


  • Neil2017Neil2017 Member Posts: 158 Courageous
    Hi @thespiceman
    Agree with a lot of what you're saying in that there is a lot of isolation and loneliness around. There does not seem to be one specific answer to it. I guess we are all human and have to live and learn with different personalities or people from different backgrounds as best we can or complain if we don't like something.

    Perhaps you need to try and work on some positives. E.g. there is this forum here and maybe positing somewhere about your interests and getting the most out of them. Like the Coffee Lounge discussions area.

    Then think if you can get back into your old group and give it another go.
    All the best
    Neil
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @steve51 Thank you for welcome and comments.  I don't think I have talked to you.  I appreciate the advice always welcome thank you.  Been doing bits and pieces various topics and debates on this forum.  It helps.  I do know this so do you that it is never easy talking how us men feel.  I can speak here I think well I do know this as well because it has happened on numerous occasions.  I get put down in any thing I join.  It seems just lately whenever I do enrol in any groups or support groups.  I am coming against problems or issues or worse please can I say this discrimination against the male sex.  One example of this was a Christmas activity day in a group who were making cards and so called decorations.  All women but I was one of two men.  I felt very strongly about this and did speak my voice.  The other lad felt uncomfortable making in his words prissy and feminine things for no one in particular.  He has the similar background to me.  We just sat there the two of us.  I use humour very dry to ease the situation.  We wanted to leave the room but felt all eyes on us not joining in.  I make an excuse and left the room and he did the same.  Phone call later from team manager very disapproving.  Told her some people hate Christmas.  I am one that I thought would be understanding.  Unfortunately said to me I had ruined the day.  So I had to hear want every body to have good time.  This keeps happening this tut tut noise you can not say that or do that.   I apologise for long explanations.  Have a bee in my bonnet lately what is happening to me.  Especially my confidence slowly being eroded away.  Getting depressed and it is getting to me my situation.  Thank you reading this and I hope you understand.
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  • steve51steve51 Community champion Posts: 6,683 Disability Gamechanger
    Hi @thespiceman

    Thanks for the reply don’t worry I will never mess you around.
    Yes I have also been messed around lots off times with different groups.
    This forum touch wood is very different.
    I’m part off the team so I won’t ever mess you around.
    Please please don’t go down the route of “depression” if you can.
     Please please let me know if I can help you with anything else ?????
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Neil2017 Thank you comments.  Nice to talk to you.  Also the wise words.  Please can I say I have been on this forum I think I joined about July.  First I noticed the warm welcome and love and support I get from every one who replies to me.  I have said a lot of stuff about myself in various forums.  Very keen on the political side of disability and all related matters.  The work that SCOPE is doing is fantastic in that area.  I do look on web pages, media about any related themes.  Recent debacle about ESA plus the PIP saga.  Which is traumatic and is effecting every one in our community.  I should know I am a victim and still am.  Personal interests are music Soul and Motown.  Used to be an allnighter in the Northern Soul scene up and down the North of England.  I am called the Spiceman because of my fascination and obsession with spices and also herbs.  Which I have used for my own health reasons.  I have tried to get back in to other support groups.  One of the things that is happening with all charities is the funding and limited resources.  If you please would like to read some of the forum debates.  Pleas can I tell you I was one of those people told we feel you do need support.  In fact so many charities are stretched that any hint of being well and able to cope.  You are given the boot.  Fact of life.  They often ask you do need any sign posting or other such networking.  This is what I trying to do now.  Always on web finding a path to happiness.  I hope you are OK pleasure to meet you and hope to discuss any stimulating debates.  Take care
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @steve51 Thank you very much.  I did know you were part of the SCOPE team.  Like your replies you sound like me injected with a bit of humour.  Please also like any advice you have given to others and myself.  I know just doing job much appreciated.  I apologise sometimes old fashioned gent not very good at this IT skills typing sometimes too long get tired.  I will contact any of you if I get stuck either by phone or on here.  I am on meds for anxiety and depression.  Get stressed a lot with an addiction background.  I am sorry I think said that before.  Been clean next year eleven years.  Still what does not help this time of year plus too many booze ads on TV.  That does not help any body does it.  I have info on what is happening in my area.  Need confidence at present not too good this helps.  You lovely people at SCOPE and on the forum.  Thank you hope to speak to you soon.  I know what I need it is just finding what is right for the spiceman.  
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  • steve51steve51 Community champion Posts: 6,683 Disability Gamechanger
    Hi @thespiceman

    “Thanks”

    Yes I Do like to help/support you guys & girl”

    I have got 2 heads I suppose !!!!!!

    Mind you I only want one head to date!!!!!!!

    This is more than a job for me to be honest!!!!!!!!’

    Please please let me know if I can help you further to build up your confidence if you would like!!!!!

    Many thanks.

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @steve51 Thanks very much.  I am at present doing OK it is just the end of the year blues I suppose.  Also leaving a support group is according to stress rating.  I read a lot on mental health issues and how I can help myself if I can.  Leaving a support group is medium stress risk apparently.  I have to consider the next steps for the spiceman.  I probably as all of community who are involved in benefits.  Seek support and advice on ESA and PIP when it comes.  My confidence levels are not very good but I think I just need some time to reflect.  Being part of a group of people plus support for three years is a small bit of time but.  As the letter says they feel I do not need support and I can understand that.
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  • steve51steve51 Community champion Posts: 6,683 Disability Gamechanger
    Hi @thespiceman.

    Thats no probs I’m here the majority of time!!!  

    Please please let me know when you’re “ESA & PIP” drops through the door ??? 

    I always think that that there is always people who are in more trouble!!!!!

    We are only “home alone” for half of the day & there’s lots of people who live on their own & don’t “see/talk” too people for “months & months”

    Please please let me know if I can help/support you further????

    Many thanks.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @steve51 Thank you very much.  I am one of those people am afraid.  I will contact you and the team.  Besides always got something on my mind.  I know you have seen all the chat and on the forums.  Many stimulating and interesting perhaps even thought provoking stuff I often start does help.  Enjoy what you all say and comments.  I think a different view and opinion lately makes the day more rewarding.  Meeting so many people many like myself and also every body has a story to share.  I am welcomed with a lot of support.  I know at present being the towards end of year is never easy and see from many comments I am not alone.  I hope to speak to you soon and welcome any advice if I have an issue with anything.  Thank you and best wishes.
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  • Neil2017Neil2017 Member Posts: 158 Courageous
    Hi @thespiceman
    good to know you’re okay and responding on here today. Hope the cold weather is not to bad for you. It is more rain or just cold where I am 
  • steve51steve51 Community champion Posts: 6,683 Disability Gamechanger
    Hi @thespiceman

    Thank you very much for your post.

    I do find music works very well.

    1. During the day I watch music videos.

    2. At night/bedtime  I put earphones on and I “blast”
    my brain “big time”

    It distracts my brain so that it doesn’t have time to think about the word “PAIN”

    Thanks.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Neil2017 Thank you for support.  I wrote this about loneliness because it is effecting every one.  I recall lyrics from a song which says loneliness is a crowded room full of hope and heart those dreams turn to snow.  I know reading on the forums and pages so many heartfelt stories like mine.  I think it is even becoming worse now than it ever was.  I have had the experiences.  What helps me through the day is this.  The amazing support, kindness and appreciation others give.  Thank you.  
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @steve51 Thank you for response.   How are you?  I am sorry you are in pain I am on painkillers most days.  I have to just over counter meds.  One of the everlasting effects of an addiction is the muscle wastage and also the after effects of that.  Most days usually night time worse is pain in legs and feet.  Constant pain in muscles daily I have to take meds in morning will do it.  Any way my heartfelt thank you.  I know you are all there.  Today well what does not help is the constant now bombardment of ads and music all Christmas.  I am sure people on this forum can identify with that.  Those like myself.  I have a shredder and sorted out a load of old bills etc that helped stress levels.  Done that this morning just got to me some times my situation.  Playing jingle bells and little donkey on radio this morning.  Hey come on I shouted enough is enough.  Now on jazz station up beat bit better.  Have to Weepy Wednesday as I call it just find a way to go out to day shopping.  That is not helping either going shopping wheres the chat and talk.  If I speak to anybody today be a miracle.  Last time went shopping all coldness from people.  Bumping barging the last bargains.  Left my trolley only to find some one had taken my carrots and I stood staring who the hell done that.  This is the issue people out their don't give a bleep bleep about you.  I saw a lady last week in a wheelchair asking for help as you know the same old problems no one is listening.  I asked how can I help you?  All her stuff whizzed now the shute and hard for her to put it in trolley.  I am next in line and helped her.  In the meantime my stuff is whizzed down the other side of the shute.  No one helped us both all complaining and going on customers.  She thanked me.  Rest got stares and annoyed looks.  Anyway I look on web again to see what help and support is out their.  Got a few leads then I will try to contact your team by phone.  Tried the other day just got scared and nervous do not know why.  Probably confidence lacking.  Had problems getting the right sort of help.  This is why I am probably the way I am.  Everytime asking got wrong advice and ended up no where.  This loneliness not helping.  I can talk here and sorry for long winded stories and chat just really tired of this.  Unfortunately the other side of loneliness I forgot to mention is that.  The problem is places that can support me.  All the routes on the web point to organisations I have been with before.  Contacted AGE UK do not take any body under 60 years old.  My area so lacking in resources and information.  I have asked but the systems are in place for anybody for over 60 or under 30.  Nothing inbetween.  I noticed a few people on this forum commented on this.  No wonder the country is suffering this loneliness.  Also a lot of organisations wont have you back.  My last mental health charity is one.  Thank yo and hope to speak to you soon take care
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  • steve51steve51 Community champion Posts: 6,683 Disability Gamechanger
    Hi @thespiceman

    It’s great to speak to you again !!!!!
    Yes I “rattle” along with all of the Meds that I’m currently on.
    I’m currently on maximum amount’s off everyone!!!!
    Sorry to here about your “Loneliness”
    Please please let me know if I can support/help you with???
    If you are to scared to make the call to our helpline please please let me know & I will help you????
    Please please let me know if you need any help/support you in anyway??????
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @steve51 Thank you.  Not too good today being Friday.  The question I suppose I need answering is what options are available to me for support.  As I am needing just well some one being there to guide me.  I mean what can SCOPE help me with.  I typed in my are the other day my postcode and details.  The area I live in not to give anything away is North East England.  I found there are very few facilities in the area.  Especially SCOPE.  I am looking for some where to go socialise be with disabled people like my self.  To cope with my mental health issues and disability.  The problem is being confident again.  The other issues is that I have been to several support groups for me.  We have the cree projects around here.  These were set up by Co. Durham Council to stop men being lonely.  Problems started when a lot of the men I found did not want to be with a disabled gentleman and many of them were not very pleasant.  The other big problem in my life is that I keep meeting people it is usually an much older man who is in charge and so he does this sort of patronising and conserding way with me.  I get knock backs all the time.  The Captain Mannering sort of guy you suggest a idea a simple one to make the group do some thing and he says I was waiting for some one to say that.  After about a couple times this becomes a worn out record.  So men disappear.  The other issues sorry about me having a rant is believe me I am not sexsist, but the admin side of the cree is run by women.  Even it is a mens support group I thought why can not men run it the admin side.  Then my friend told me the pay structure of women get paid less.  So I meet these ladies who have no idea about men like me.  Then it starts the disapproving the I do not believe it.  If I make a complaint about one or the aatitudes I get.  One bloke was in his early eighties and was running the show.  All us guys in our fifties and sixties I thought he would understand but no.  I was singled out for his brand of humour and his way.  Ruffling my hair arm around my waist talking to me like I am ten years old.  Not helping not really interested in me.  Need som times to talk and he would tell me to shut up.  Made on several occasion a faux pas because of mental health got stressed.  Ended up being a lone although in the last two years or more since I left met them all and they all are like me.  These being the members of cress it was the same for many support groups.  I will and do try but if is no connection with any body in the group how can I go there.  Also the other big big issues  is that I can and do get used for by self.  My car and anything else group members want to use.  If I get friendly with anybody the constant ringing and texts.  I do not mind ring or texts but not like everyday and like the last time something like 2hrs phone calls and 48 yes 48 texts bombardments on rubbish.  I rarely give details out because guys who I also meet have severe problems often learning ones live alone and why expect me to sort them out.  Last lad I met coping on own could not do it.  Can not cook, clean, cope with anything.  Rang me up spent all money on betting and back on the booze.  Blamed me for that.  Had meeting with his support worker in end and mine support worker told his what the hell are you doing.  You do not need this and everytime I join something I meet guys like this.  This is a lot of my mental health issues.  Starting to get depression and little bit anxiety now.  I know I was in this mental health charity sais do not need support but met some one on Wednesday the same as me.  Does the and feels the same.  Where to go to next.  I apologise the long tales and sagas but that is the nub of the problems.  If I feel bit confidence try to ring but this helping talking here.  Thank for reading this.  Thank yo for support everybody from the bottom of my heart.  I hope you all understand me a little better.  I am feel also mean to go on but there are nine million of us and all of us do not want to be ike this.  Problems are not me it is society and the people who have effecting me.  Iam still meeting these   Hope to speak soon give some time very really tired this morning been worry about myself.
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  • CockneyRebelCockneyRebel Community champion Posts: 5,256 Disability Gamechanger
    edited December 2017
    Hi @thespiceman

    I am so glad that you are able to come here and share your story. We are all here to listen, help and support you and anyone in any way we can. I know it is not the socialising that you want but I hope it helps a little

    CR
    Be all you can be, make  every day count. Namaste
  • steve51steve51 Community champion Posts: 6,683 Disability Gamechanger
    Hi @thespiceman

    Thank you very much !!!!

    Yes we / I can help & support you in anyway possible.

    Please please let me let me know if you need anything today ???

    I’m always here for you so don’t “feel alone”

    Please please don’t get “depressed” 

    We can talk/go through things any time of the day if that would help???????

    Thans.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    edited February 2018
    Hello @CockneyRebel Thank you for wise and caring words.  I thank you and we as community are much appreciated to have guys like you around.  I know I speak for the community.  Yes I am trying my best just having a bad day.  I started this about loneliness because I know I am not the only one and wished to share.  I find hard to talk to people because I get flustered as no one has the time these days to stop and listen.
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  • CockneyRebelCockneyRebel Community champion Posts: 5,256 Disability Gamechanger
    Hi @thespiceman

    I find it hard to keep up with the furious pace of life also. Seems like everything has to be done yesterday. I am finding it increasingly hard to understand or keep up with all the technology being thrust upon us and to be honest I don't see a need for it in my life. I just hope that the rubber band that powers my PC keeps going

    CR
    Be all you can be, make  every day count. Namaste
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @steve51 Thank you for supporting me today.  Sorry did not get back earlier .  Trying to cope with household chores plus had a pressing engagement my joke the ironing.  That has helped also my soul music and radio to whittle away the hours.  As I have said the issue is not only finding places to socialise that I can interact with.  It is also the patience and tolerance of people.  No one to face to face what is going on.  Why walk away I am talking to you ?This being Wednesday the bloke I met while shopping he started the chat.  At least here you do not walk away or at least got a response.  Here is something I forgot to put.  I started going back to Church organisations last year.  Thought give it one more try.  Ended up again alone.  Sitting on my own I thought do I smell is my killer deodorant.  I calmly walked out.  None response.  I tried my very best to interact.  I did not want to be pushy or introduce myself.  I just thought as I sat some one will come and sit at this table or near this chair.  Supposed my luck spoke about this before.  Doing nothing wrong just getting ignored.  I also one year did Crisis at Christmas being a civil sort of guy home alone on the day.  Volunteered at this centre dishing out grub for the homeless and the families on low incomes.  Any way this year found out according to sources nearly £30 if you wished to assist.  I am sorry I do not mind helping but am on not much.  Last time a Church organisation went to help in the kitchen.  This being a while back wanted my help no more interested who I can pick up.  Did not mind but it was a struggle and then I had no Christmas Lunch because they forgot me.  I had to ask for a bite had nothing to eat.  All the people who I picked up did not want to go home.  More interested in finding the next pub and expected me to follow suit.  I said this the name of the organisation will not approve do not do that sort of thing.  Well they wont know.  I went home and no feedback so I just gave that idea up.  I still practise my faith but that is the well one of the reasons I do not get involved with the church.  You can see I am hurting I mean this not right is it.  One final point something has to change.  I do not know how though if their are so much self centred and people who want to use you.  What can I do ?
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  • Neil2017Neil2017 Member Posts: 158 Courageous
    Hi @thespiceman
    Agree with you nobody seems to have much time and at times or in places even next door neighbours do not know each other. It’s either that or your ignored. I was on a train once early in the morning and it was so quiet. Like everyone was in there own personal zone of zombie mode!

    @CockneyRebel

    so that’s What happened to Widow Twanky from Aladdin this year. Twanging rubber bands in your computer!! I read somewhere that Apple is sublimely trying to faze out ‘the computer’ from latest adverts. Rubber band power could make a comeback in concert any time soon or that could be stretching the puns ;) 


  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Neil2017 Thank you for replying.  How are you?  Just all I have to say is thank you for support.  You story about the train being in zombie mode.  What is even worse all on mobiles and these small computers tablets is it.  My favourite story is something similar I am in a café at a table seat in front of me empty no one want to sit in front of me.  All I saw were people trying to find a empty table and the next person doing the same.  Till all tables full.  Getting glares and stares because n one want to sit in front of the disabled guy.  Only left a minute to get something like cutlery had jacket on back of chair.  Turned around my coat on a trolley holding trays and the waitress saying my number.  Well I was here and the two people saying I was not.  Can you believe it unfortunately for them the café staff knew me.  He was here.  Found my self in a pickle and dreadful state.  As I am not one to argue with idiots.  Do not want to go to their level.  Had to stand and wait till table free.  I hope to speak to you soon
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  • steve51steve51 Community champion Posts: 6,683 Disability Gamechanger
    Hi @thespiceman

    Thanks, don’t worry about earlier I have been very busy myself today. 

    I’m so sorry to hear that you are having such a bad time but please let me know how I can help you ????

    This site is the business & it has given me something to fulfill my days. 

    It also gives me a “purpose in life” 

    I have always wanted to do something like this !!!!!!!!!!!!!!

    Many thanks.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @steve51 Thank you for replying.  How are you today?  I read what you said.  I am up and down with moods this is a common trait.  I know I am grateful for you and others for reading my blogs is that the right term.  I think I am just appreciated for reading anything.  I like to build a rapport with yourself and hope we can help each other.  In the quest for acceptance as disabled people in a world that does not have time for us.  I would just say thank you for answering anything I write on the forums.  I see that their are a number of us who have stimulating debates.  We all get a reply from the SCOPE team and the rest thank you.  I am at present being yes I write about being on my loneliness.  I wanted to share and wished to know how others cope.  I just reading what I have said and it is upsetting and not at all what I expected my life to be.  I do not think anybody would.  I would not be self centered and would appreciate anything I write to be a response.  Sometimes being lonely and trying to talk I sit the silence is deafning.  Just need to write and share anything I write.  Also the big issue is that.  I have days that need to be fulfilled but end up being days of emptiness.  I was never like this all of us have families all of us had friends all of us had have experiences and joys of relationships. Suddenly by the time I was in my forties all gone.  Why I think about it daily one of the things caused irrevocable damage and unnecessary harm was my mothers relationships with any one who called me.  When you live with someone who is a jealous person and controlling the evitable erosion of friendship would crumble.  Why would anybody call ?  If you experience the person like my mother receiving the call making a simple phone call into a nightmare from hell.  I would hear about it from them, my friends telling me if your mother talks about me like that again.  Well one person can not take that.  I have met several friends from my past recently and they were all scathing of my mother.  Tried to reconcile too far gone.  They have married or divorced got children, grandchildren.  Do not want to know.  This always on my mind.  Now I got and have therapy over the last twenty years or so but nothing is working.  Most people I talk to have had similar backgrounds and when I talk about it they get angry themselves or get flustered.  Some do not believe what went on.  Had happy childhoods.  So they think that I am making things up and when I try to talk try to make me guilty.  It is my fault.  I tell them why am I lying it is truth me being Christian and all that.  That is all I want a voice somewhere to talk and chat and debate.  Being disabled and ill mental illness is not easy.  So that is the sort of things I need to discuss.  I will give my true opinion and views of anything.  I will need and some one to listen.  At the same time listen to you. Thank you all for time.
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  • steve51steve51 Community champion Posts: 6,683 Disability Gamechanger
    Hi @thespiceman

    Thank you very much for your post. How are you this morning ???

    I had further stomach surgery in October.
    not great at the moment.

    Yes it’s fine to chat but we really need to do it through our “Wall”

    Have you managed to
    find this???

    Please please let me me know if I can help you with this ??!
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @steve51 Thank you for replying.  Sorry not too good today get a lot of pain in legs and arms.  I am suppose OK but it is the pain just gets to me.  No matter how many meds.  I did not know about this wall as you call it .  Yes I be grateful if you can help me with this.  I do not know what that is.  Anyway I note you not good as well.  Sorry about that.  My problems minor compared to yours.  Hope you can help ?  I know I need to chat could be useful.
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  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    edited February 2018
    Hello @thespiceman Good to 'meet' you :)

    Like you, I know about loneliness. I am not disabled myself, but I was dad to a very, very disabled little girl until she passed away, and I felt often deeply ashamed and angry at the way the 'abled' reacted to her and to her many disabled friends.

    For the four and a half years of her very difficult life she was the centre of my world and my and her mother's life was focused on hospitals, doctors, and nurses, and on the friends we made through her, almost all of them parents of disabled children and the children themselves. We, too, faced the endless struggle when it came to finding respite and obtaining necessary benefits. When she died, of course, we suddenly had no need of hospitals, doctors and nurses, and around the time of her death a lot of our friends kind of fell away. It was rather as if her death might be infectious :) Even the main charity supporting bereaved parents was of little use to us. Jenny, my daughter, had been seen as 'different' by the able all her life, and that carried through even into her death. We were two, then (and a bit - her brother had been born just 3 months before she passed away) but about 18 months after Jenny's death her mother walked out, leaving me alone with my son.

    I have never known a lonelier time.

    Single, losing all those medical associates and so many of our friends, needing to earn a living and raise my son, I drifted away from the world of disability. That was about 25 years ago now, and when I did think back I sort of assumed that medical and social progress meant that things must have been getting better. Then, ten years or so ago, I started working with Autistic Spectrum children in a local high school and began to realise that things had not got any better at all. They had become, if anything worse. And that's really why I'm here, hoping to help others through Scope.

    So I've told you a good bit about myself. Being so new I don't yet know much about you and would be very glad to chat with you and learn more. From what you've said, we may not share much in our taste for music. I listen mostly to classical music and film scores. But if you can tell me the names of some of your favourite pieces, or let me have Youtube links, I can give yours a listen so we could chat about it. My other interests include movies, history, writing, natural history, photography, art and creating learning resources, particularly on computer.

    Any of that sound interesting to you?

    And of course there's b****y Christmas to talk about :) All those godawful ads and music, all the focus on shopping and 'things' - bright new things that we none of us really need.

    A long post, sorry :) Take care of yourself out there.

    Richard
  • steve51steve51 Community champion Posts: 6,683 Disability Gamechanger
    Hi @thespiceman

    I’m so sorry to hear that you are having a bad day!!!!!!

    Yes I have right sided pain 24/7. 

    You will be able to hear me rattling along.

    I’m also on stronger patches 
    than the “Morphine” ones.

    I didn’t know that there was stonger ones????

    They are a real pain as you have to change them every 4 day’s.

    Pleasr please let me know when you are feeling better and I will go through our “Walls”

    Dont worry it’s really really easy!!!!!

    I will help you at every step.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @RichardVR Pleased to meet you and thank you for your reply. Thank you for sharing your story.  I wrote the blog on Loneliness because I had to talk about what is going on.  I had a amazing response.  I find that it spreads all aspects of our community.  Pleased to meet you and I hope you can find solace and comfort in any of the stories that come on the forum.  I know it has been hard and difficult for you.  I find the people I talk to here can be a source of comfort and can rest my mind all the time of worries and frets and the days untold downers that I get.  The team Scope responses to help and advice is fantastic and very informative.  I have found out a load of information and advice I would have not got anywhere else.  My own personal story is laid out for everyone to share and comment.  I joined in Summer and I need to talk.  Today not too good but I have some time well a lot of time to talk.  Fighting the pain today.  Sorry about this.  Get a lot of pain most days plus with Christmas not helping getting too near.  Sorry too long sentences again.  I had a rest and stopped for a little while today.  Taken some meds to kick in now.  This is helping to talk. What about me well I am in my early fifties, disabled from birth.  Have an addiction history clean now eleven years next yr.  Every day hard.  Have mental issues from it.  Like well I do like classical music and opera mainly the Italian stuff.  Also into the soul scene northern and motown  Call me the the spiceman because use herbs and spices for my health benefits.  Please if you would like to visit at your leisure any of the debates I contributed to this forum.  You will see my interests plus the other stuff like the way we are as a community perceived by the country.  My political and social comments on the country that mistreats us.  I am a Christian and do not go to a Church practise my faith on my own.  I am interested in other stuff bit of an anorak on movies from the forties and fifties film noir.  M.G. M musicals and the early history of TV and collecting.  Ran own business up and own country selling and buying.  Often go off on one like a rant.  Latest one Christmas.  See my contributions if you wish to.  I think that's it. I know there is too much but that is me.  In this week so far seen no one .  Speak to only people here.  In fact I think being nearly two weeks seen none.   Best wishes and take care. 
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @steve51 Thank you mate Please I will contact you.  Just given out long piece to someone new.  Sorry Please can I speak to you later.  Getting tired.  Will talk to you.  Unless you can give steps here how to do walls then I can do it.  Might help others who in similar position.  Hope you OK.  Thanks for looking out for me Take Care.  Thank you again.
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  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello again @thespiceman Really good to hear from you and about you, though I am sorry you're in pain. I've always got an ache or two as a result of malformed feet, but they're obviously nothing in comparison with what you are going through.

    I've read this post, Loneliness in a Crisis, of course, and will be looking out for more of your writing. I've joined Scope as a 'community champion' (I think it's called) and am not much in need of support myself, other than friendship (which is always welcome!). The tough stuff happened for me a quarter of a century and more ago, so it is very much in the past now.

    Movies of the 40s and 50s? That makes me think: "The Maltese Falcon", "Casblanca", "Arsenic and Old Lace". Lovely stuff. Not so much a fan of the musicals, though "Carousel" has a very special place in my heart.

    I am a novelist, too, and am researching the Victorian era with a view to setting a novel in the period. It is staggering to see how closely the bigotries and prejudices of the Victorian era have been recreated by our modern politicians. Staggering and profoundly sad. I live within a 50 minute rail journey of London and am up there quite often, and it is horrible to see the number of people huddled up in doorways because they've nowhere to sleep. Being Christmas only seems to make it all feel worse.

    I am sorry you seem to be spending so much time alone and wish there was something I could do and say that might help. I can only tell you I'm here and listening, and very, very glad to know you.

    Richard
  • steve51steve51 Community champion Posts: 6,683 Disability Gamechanger
    Hi @thespiceman Don’t worry about the wall at this stage as we are doing fine to date. Please please let me how you feel???????
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @RichardVR Thank you for kind reply.  I did not know that That is excellent being a champion for SCOPE.  Great I hope you find everybody grateful and supportive.  I just let you know OK today well just plodding along.  There has been days most of them have pain.  It is a fact of life.  Seeing that others have similar reading there stories.  I do not want to make a fuss.  Being the way I am.  Just helps having to talk about it.  People do not understand that loneliness causes pain and things that I see and hear from people stories.  Like yours you have pain of bereavement and I get upset and feel for you.  I had in my life met single mothers who had children suffering from illness and all sorts of diseases.  This is when I was in hospital and even when I left kept in touch.  Helped out much as I could.  I do understand what they all went through.  I pray for you and I pray still for them.  Coping was the hardest trauma of losing a child is I do know seeing my friends go through the pain.  I was always there to help much as I can.  What happens is they and me somehow lost touch and they sort of drifted away.  I tried to cling on for any support they needed.  They just sort of moved away and on with their lives.  It was a loss to me as I did my best to be a friend.  All I have is memories.  I am sorry if I bought that up I know memories can be painful.  I thought explain I do understand.  Any way yes all the movies bought up Casablanca, Maltese Falcon etc all classics.  Film Noir is called that because the films were black and white and filmed most of the time at night time.  Classics my favourite Double indemnity which the star of all these movies genre man meets women who falls in love , kills her husband, for insurance money, then he gets framed or killed by her or someone else.  These all good to watch good soundtracks.  Trying to get on DVD can not find them.  Channel called Talking Pictures has a load of these sorts every day.  Seeing what you said a novelist well the best with that.  Lots of research When it is published let the community know or myself.  Great to talk I see also the connections between this society and the Victorian Era.  When I was buying and selling stuff always met a lot of the homeless.  Begging for money.  All the dealers ignored them, I ended up saying buy you coffee or tea and a sandwich.  Because many would just spend the money on ciggies or booze or drugs.  Soon as they accepted you used to hang around fairs waiting for me.  Many sad stories.  I hope you be OK with Christmas coming.  Thank you Hope to speak to you soon best wishes.
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @steve51 Thank you.  Yes I hope you OK Have been talking as you can see new people to the forum.  Giving my support to them and being interested in there lives and stories.  I am today up and down mood wise.  Christmas blues I fear the day is always bad day.  This is helping.  Had pain in the legs last night not too bad today but it always varies.  How are you hope you taking it easy.  Thank you for support thank you
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  • kazzab68kazzab68 Member Posts: 1 Listener
    hi I'm karen I also don't talk to my parents or 2 of my boys I miss seeing my grandchildren but the more I try the more they seem to hurt me I nearly died last week I thought that might make them sort this all out but no instead just caused me more heart ache I feel such a failure and no good for my own grandchildren I'm registered bind and have other medical problems I just don't want to feel empty any more or worthless but it's so hard I have tried to take my own life 4 times all because how I feel I have no one who understands or willing to talk about this with sorry I am going on 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @kazzab68 Pleased to meet you.  Welcome.  I am here to listen as many of community are.  Thank you for sharing.  No one can understand what you are going through.  This is a message of support and I hope you can find solace.  Please do go on have a rant it is always OK.  This is what I do.  I have to I also appreciate your honesty about what you have been though.  If you feel like a rant or want to talk I am here.  I will answer anything you want.  Please I hope you take care and if wish to talk am here.  I had these feelings of being empty and being worthless.  What helped this is helping.  Being part of this community.  Also finding support and trying to move on every day.  I hope and pray for you best wishes
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  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Lovely to hear from you, @thespiceman Don't worry at all about raising memories for me, it is all a very, very long time ago now. I have allowed myself to grieve and even helped myself by watching movies or listening to particular pieces of music that I know will always help me to cry. My life and working experience have brought me into contact with Autism, Cerebral Palsy and other things which I am hoping will help me to be useful here, but I am extremely lucky and I know it. Aches and pains I may have, from time to time, but I have nothing myself that could begin to count as a 'disability'. And I am so very fortunate in that. I don't know how so many people actually cope, and I respect and honour them for doing so. I respect you, too, for being such a good friend.
    Double Indeminity! Fred MacMurray and Barbara Stanwyck! Love that movie, though I don't think it is in my collection.And you're right, "Talking Pictures" is a great channel, yet somehow my TV seems to have lost the digital channel. When I look it tells me to re-tune, and though I've re-tuned pretty much everything in my time I cannot find the re-tuning mechanism on my set. 
    Does your interest in movies include Hitchcock? Particularly the early ones?
    23rd of December already, the two big days just ahead, and it really is a pain, isn't it? I am sorry it gets you down, but I entirely understand.
    It is really good to hear from you and I hope the pain is not too bad today. I'll be checking in over Christmas, so don't hesitate to chat if you feel like it.
    Best
    Richard
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello Karen @kazzab68, and welcome to our community.

    I am really, really sorry to hear that you are suffering so much, and I understand the yearning to 'end it all'. I've been at that point many times in my life but am still here. If I can help, I am perfectly willing to talk about these things with you.

    Most importantly, you are not 'worthless'. If you were, I and others in the community would not be here :) and we DO actually care. I'm going to try to find you someone better qualified to help you, but in the mean time I am here and listening. Perhaps you could share some more information on why you feel so very bad?

    There are more stars in the heavens than there are people on Earth, and seeing so very many up there we might think "Well, what would it matter if one of them, one of so many, went out?" The truth is, of course, that if you get close to it that star is absolutely enormous. It may be the sun to a planet on which life exists or is evolving. So if that star 'went out' the real repercussions - which we cannot see from here - would be absolutely enormous. Your life is like that. You are a star. You cannot begin to know how big a void would be created if you were not here to fill it. Trust me.

    I wish you well, Karen, and hope we will hear from you again soon. Take care, and talk to us about anything we might be able to do to help.

    Best
    Richard
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @RichardVR Thank you. Yes great to talk.  Thinking about the horrible days ahead.  My TV off too much Yes early Hitchcock.  Another useless film fact used Chocolate in the shower scene of Physco.  Always have favourite actors and actresses like James Stewart who did four movies and Tippi Hedren.    TV not too good sorry about that.  I wonder if it is possible to look at the TV booklet you get they usually have a helpline number.  I once did a stupid silly thing rang this lad around the corner from me.  Had similar problem, he was a TV repair guy  Cost me £75.  Stung me and me in those days not that good.  Being the way I was then.  Ever since then always cautious from anybody I have to do anything in the property I rent.  I rent a Housing Association Property.  So they do a lot of things like boiler and electrics.  Worry about saterlite and other things been a target in past.  Nice to talk to you and catch up soon take care my friend
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  • steve51steve51 Community champion Posts: 6,683 Disability Gamechanger
    Hi @thespiceman

    Many thanks, due to being in hospital recently my Meds/Prescription’s where all over the place.

    The recent snow also added to the problem. I ended up having none of my stronger patches.

    With the NHS changing the Prescription Process I/we will need to wait 7 working days to get our medication!!!! 

    Luckly I had some off a lower dose patch to use.

    Soory for going on!!!!!!

    How are things with you today ????

    Please please let me know if there’s anything that I can help you with ?????
  • TopkittenTopkitten Member Posts: 1,090 Pioneering
    @kazzab68 I am sorry you feel this way and know what it is to lose all hope. I have overdosed around 18 times. A dozen accidental the rest intentional and once put myself into a coma for 8 days. It is a difficult thing to claw back from the abyss once entered but I would think that, should you find the courage to open up and look for help, you can find other disabled especially men who will give you the support you need to find a way forward. Do be a little careful as men seem to outnumber women in the disabled fraternity and are looking for more of a physical relationship. I have heard a number of stories where the men have taken advantage but then that also happens to healthy women too.

    I can't give you good reasons for not doing harm to yourself and wouldn't if I could. It's a private and very special situation that most will not understand. All I can say is that a large number do pull back and find a way forward and it is hard to try and not survive, despite what people think.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @steve51 How are you?  Thank you for reply.  Up and down too near not looking forward to tomorrow.  Just have to grot my teeth and get on with it.  What has helped the TV is off was last night and most of the day.  Playing radio and being on here talking to every one who has answered anything I have sent or made a comment.  Big thank you I hope it helps and I hope I help you.  Those like myself.  Sorry about your meds situation.  Counting meds myself got enough till next week.  If I send in a prescription early should be OK for new year.  Pain meds getting short got enough till next Wednesday. I think.  Just have to carry on.  This is never easy is it having meds.  So troubling.  Try not to take too much but up in the night.  Wander around the bungalow and just sitting.  Sorry another aspect loneliness of the night.  Having spent too long on my own.  There is just me.  In the old days surrounded myself with people and if and when I woke up some one was there.  If I staying over night.  Even when I was in a relationship an empty bed now.  Never easy.  I read a story about Elvis Presley saying how loneliness effected himself.  I mean the guy had money, women, friends and the stardom yet still lonely.  I can understand that.  Had to have some one share a house with him because he felt lonely.  By way you do not have to worry about going on.  This is what I do.  I need an outlet for talking and being part of community.  This is helping.  I hate Sundays for once TV will be off.  All rubbish and too many Christmas Specials and constant repeats of movies I do not want to see or ever see.  A lot of them insult my intelligence.  Rumours in Hollywood say for ten movies that are made by a studio.  About half bomb and the other half just cover costs.  Maybe one or two will be a smash and cover costs of the rest.  I have to put sub titles on can not understand what any body says.  The good old days of movies nice crisp clean voice.  Not many of them.  Oh god having a rant.  Well it is silly I got a TV with 500 channels and nothing worth watching.  Another aspect of loneliness.  Only in this country Christmas comes along and it is full of nonsense and rubbish.  I get more from talking to everybody.  Thank you all.
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @steve51 I forgot the wall I notice on my page it says share and you have been putting some words.  Is that the wall my page.  Please I am not good at this IT stuff. If you wish talk about it later on.  Thank you as always take care speak to later
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  • CockneyRebelCockneyRebel Community champion Posts: 5,256 Disability Gamechanger
    Hi thespiceman

    I always read your post with interest but cannot always reply, sorry.
    This can be a very lonely time and even the forums seem to go quiet with not many people to talk to. I wil still be here to listen every day ( barring going back into hospital ) so please don't feel neglected

    I wish you the very best time you can have

    CR
    Be all you can be, make  every day count. Namaste
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @CockneyRebel Thank you.  I do understand.  You have your life to lead and have other things to do.  I am also here for anybody who feels lonely over the Christmas period.  I am ready to listen and be there is you wished to talk.  Take care
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  • steve51steve51 Community champion Posts: 6,683 Disability Gamechanger
    Hi @thespiceman

    Yes that is perfect my friend.

    Just above share you will find a empty box just like this box here.

    You will need to hit the “comment” word under one of my posts.

    This will give you an empty box like these here.

    Once you have finished your post just press “share” & the message will only come to me.

    And any further messages will only be shared between the both of us.

    “Groovy”

    Please let me know if you get stuck?????

    Have a “Great Xmas”


  • TopkittenTopkitten Member Posts: 1,090 Pioneering
    Loneliness can be a very difficult thing to deal with' My partner walked out on me in 2005. Since then I have been alone. As the years have gone by I have had reducing levels of support from the system and from family. Finally last year (2016) my mum died in July. Since then I have been completely alone with no support. I pay for a cleaner once a week for an hour. Other than that I manage round the house by myself. With the money mum left me I have been seeing escorts recently but that is partly to prove I am still capable of being a man in some things and party for company. I will gradually reduce it. I have rebuffed 3 or 4 women that wanted a relationship with me. Initially carte blanche but, more recently, have relaxed that and would now agree to seeing a lady that understands what is going on with my condition and how it will affect my future. In reality it is the same thing but it made me feel a bit better about it, lol! I go through phases of going out and others of not doing so. I suppose I am not allowing myself to be 'in a rut' about things. By changing the rules from time to time it makes the loneliness and isolation a little easier to deal with. The only thing I cannot cope with consistently is being refused treatment that I am in desperate need of for the stupid reasons healthy people rationalise away. That and only that will end my life sooner than it should. Loneliness is something that can, with effort, be coped with.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • steve51steve51 Community champion Posts: 6,683 Disability Gamechanger
    Hi @Topkitten

    Good Afternoon!!!!!

    It’s great to meet you today!!

    I’m very sorry to hear about your “Loneliness”

    Please please let me know if there’s anything that I can help you with??? 

    I’m very very happy in helping you in anyway that I can with your “Loneliness”
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