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Struggling to remain positive

Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
Hi everyone, my name is Ami and I've recently turned 23. 
To cut a long story short, I am deaf, blind (central vision loss, reliant on peripheral vision, been diagnosed with optic neuropathy), have no balance so am wheelchair bound. I cannot walk unaided at all. These disabilities have happened since after Christmas 2016.

I've suffered with depression, anxiety and panic attacks for 10 years. I was anorexic when I was 13/14, also suffered with vitamin b12 deficiency and raynauds since. 

I cant even put into words how all of this has affected me, I feel selfish for constantly thinking "why me?" I have lost friends because of my recent disabilities which breaks my heart. I miss working so badly. I feel like a burden to those who support me, I have no idea how to cope with this especially as I'm not getting any better...

i am petrified.

Ami xx

Disability Gamechanger - 2019
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Replies

  • janejrjanejr Member Posts: 142 Pioneering
    Hi Ami your not alone its alot to deal with and i too feel why me. Im alot older than you so it should be easier for me but cant help thinking about my past life when i was extremely fit and always on the go. Used to have a good social life and a job i loved working with severely autistic teens. Today im having a bad day and in alot of pain. We cant change and go back Ami i know your scared but those that love you will be with you all the way and if you ever want to chat im here xx
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Hi Jane,
    Thank you so much. I hope the pain eases and hope tomorrow is a good day for you. May I ask what your condition is? Fully understand if you don't want to.
    i started volunteering with a charity back in summer 2016 and was fortunate enough to get a paid job in the November. I felt I was at my peak, I finally felt like I had control of my anxiety. My hearing loss started just after Christmas but I still worked, yeah it proved to be difficult when I tried to serve customers but work made things easier by getting to do other things that wasn't involved with customers. By the end of March 2017, my sight worsened (happened overnight, was no problem the day before). This changed everything, I could not see the buttons on the till, couldn't book in deliveries etc, one of my work friends took me aside and I just broke down in tears, she urged me to go to hospital ASAP. A few nights later I had a suspected TIA, my mum rushed me to hospital and that's also when I discovered my balance was bad. Was signed off work for 9 weeks, unfortunately due to the medical report stating I was no longer suitable for my job, work had to let me go. Honestly felt like my world had fell apart. I haven't been to the shop since the day I lost my job. I'm scared about facing what I used to love doing. I accept I can't work for the time being. I get that life can change in an instant but it's the adapting and accepting the fact I am disabled.  On good days I try and make others laugh, but my bad days I barely talk and just cry. My mum has been my rock, she's not the type to say I love you but my god love is an understatement to what she has done for me all my life but especially since all this has happened.  She is my hero, I love her so much.

    Sorry I tend to go on and on.

    Ami xx


    Disability Gamechanger - 2019
  • janejrjanejr Member Posts: 142 Pioneering
    Hi Ami i have osteoarthritis in all my joints and a disk desease in my spine. I always had an active life and was never going to be happy sitting in an office. Ive had 5 children all grown up now and was always on my feet. Loved walking for miles and any activity that got the adrenaline going i loved. I even done a parachute charity jump. My condition is progressive and im unable to work. I taught severely autistic teens life skills and loved the lads i taught. Life is unfair Ami we have to adapt and overcome many challenges. Im glad you have such a good mom and she will always be there for you. I think we all have to suffer certain trials in life to teach us how to show others empathy. In a way it makes us better people and not shallow or self centered.  Cant wait for summer im always better with warm dry weather. Im hoping to travel this summer want to build some good memories.  Its good to look forward to something xx
    P.S. crying is allowed i have my moments too x
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Hi Jane,
    im due to go to a neurology hospital in 2 weeks for 2-5 days for tests to hopefully find out if all senses that I've lost is a condition, hopefully I can get treatment for whatever all this is.
    good on you for the parachute jump, I bet that was such a adrenaline rush!  I hope you have an amazing summer and make lots of lovely memories that you can cherish forever :)
    i really admire you Jane, I admire your positive attitude, I hope in time, I too can gain back my positive attitude. 
    Ami xxx
    Disability Gamechanger - 2019
  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Hello Ami @Ami2301, and Jane @janejr. I suspect I may have welcomed you (Jane particularly) to the community already. I am very, very glad that you have found us and I hope very much that I may earn the honour of being considered a friend to both of you. And it would be an honour.
    I have had my own heartbreaks, including the too-short life and the death of my wonderful daughter, but that seems to pale into insignificance when I read your stories. Most crucially, of course, my issues were caused through someone else's disabilities, so being relatively healthy I can scarcely begin to comprehend how you must feel.
    Ami wrote: "I feel selfish for constantly thinking "why me?""
    Why you, Amy? Or why Jane? Or why was my daughter born handicapped to a degree that few people have every seen? For absolutely no reason at all, other than that Nature is indifferent to all of us to an extent that seems cruel. You have done nothing to merit or deserve this, nor could you.
    Jane wrote: "I think we all have to suffer certain trials in life to teach us how to show others empathy. In a way it makes us better people and not shallow or self centered."
    That is a thought which only really occurs to people who are, like the two of you, good, decent human beings. There is no shortage in the world of people who have suffered - and who have often suffered relatively little - whose response is to conduct themselves as bitterly, as meanly and as selfishly and more so than before.
    This marks you out - though your modesty will make you want to deny it - as special people.
    Ami also wrote "I have lost friends because of my recent disabilities which breaks my heart."
    I understand this entirely. People do not know how to deal with this kind of situation, become afraid, anxious and - in the end - selfish. Here, I trust, you will find truer friends and be better served, and I hope that one of the first of those friends, to both of you, may be me.
    My warmest best wishes, my love even, my admiration and respect to you both,
    Richard
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Hi @RichardVR
    i am so sorry that you sadly lost your daughter, I am not a parent so I can't even imagine how you feel. Although, she would be immensely proud of you at how you help others and makes sure everyone feels welcomed :)
    thank you so much for your lovely words, it would too be an honour to gain you and everybody else as a friend :)
    Ami xxx
    Disability Gamechanger - 2019
  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Hello Ami, @Ami2301
    and thank you for your words. It's 27 years since my daughter passed away, so I'm sort of accustomed to it :)
    Your honoured friend,
    Richard
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Hi Richard @RichardVR
    May I ask what condition/illness your daughter had? Fully understand if you don't want to say.
    Ami xxx
    Disability Gamechanger - 2019
  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Hello Ami, @Ami2301
    Not a problem. Jenny was microcephalic, the upper part of her skull too small to allow her brain to grow, if - that is - it contained what it needed in order for it to grow. Her microcephaly was determined to be non-genetic and appears to have been caused by her mother contracting a severe virus during the pregnancy. Some thirty years ago, of course, much less was known about microcephaly than is known now.
    A forceps assisted delivery, Jenny and her mother had to remain in the hospital for two or three extra days, supposedly for observation, but she was allowed home despite exhibiting various tiny ticks and twitches which were soon recognized by other medics as being seizures.
    Growing to a normal size for her age, Jenny had severe cerebral palsy, was 'floppy' limbed and had no control over her arms and legs. She had a severe scoliosis of the spine and was blind. Her optics appeared perfect, but the brain was unable to interpret what she saw. Her senses also appear to have been distorted in that things children normally take tactile pleasure from - furry and velvety fabrics, for example, caused her to flinch as if they were burning her.
    It became clear over time that there were cysts around her brain which would swell from time to time and, in the process, would force her brain back on the brainstem, When this happened she would labour to breathe and would turn blue. It was the final incident of this type which effectively killed her.
    We soon knew that she would never crawl, sit up unassisted or walk, that she was effectively blind, subject to at times continuous epileptic seizures, would never feed herself or be continent.
    She was, however, a beautiful, brave little human being who never smiled for anybody, or settled comfortably with anybody, unless it was myself.
    I suspect that that about covers it, but it was such a long time ago now.
    Warmest best wishes to you,
    Your friend,
    Richard

  • janejrjanejr Member Posts: 142 Pioneering
    Hi Richard , i cant think of a more unbearable pain than to watch your child suffer and to eventually die. So very sorry for your loss Richard you must have loved her so much. Life can be so cruel. We are stronger than we know. Good night Richard x
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good morning Richard @RichardVR
    Jenny was, excluding her conditions, an extremely lucky girl to have you as a father, as heartbreaking as it was to read about Jenny, I could tell how much love you have for her. You are a very extraordinary man Richard, I too am lucky to have you as a friend :)
    Ami xxx
    Disability Gamechanger - 2019
  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Hi Ami and Jane, @Ami2301 and @janejr
    and thank you both for your very kind words. My words are only honest answers to an honest question and, so many years on,  by far the worst of it is past. Life is as it is.
    Very very glad to have met you both,
    Richard
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301   How are you? Pleased to meet you.  Sending a message of support.

    Life is not easy and has been tough.  I can understand that, my past history with everything going wrong in my life.  I had set backs, problems , issues with so called friends and pain, depression, anxiety with illness.

    How to stay positive after all what else can go wrong or happen.  I say take one day at a time, small steps.

    Make small changes like doing some thing that benefits you.  You are important, make  a pleasant meal for yourself, play your favourite music, do a hobby or interest.  I like music and have created a small library of CDs that make me sing and be up beat.

    Have a comfort box fill it with memories or items that give you some positive times.  I have my bible, selection favourite music, books on Italian culture.  I am probably never going there but the photographs and illustrations bring me comfort, ease the pain and misery.

    I see you have met the good guy Richard helps me, though the week, by listening being a friend.  This helps me so I hope if you wish to chat, talk, am here to listen.

    Take care great to meet you
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Hi @thespiceman
    Lovely to meet you too!
    Thank you so much for your advice and support, I joined a few days ago because I felt lonely and negative, as I read through different discussions the loneliness started to disappear, I was a bit apprehensive to post how I felt as I am so used to bring judged but reading how supportive everyone is gave me the boost I needed to pour my heart out. So much so, I am constantly on here lol! I love the idea of the badges too...can't help but smile when I get a notification...I am easily pleased!

    i try and have a laugh or two everyday, again I am easily amused! I even make jokes about myself just to stop me from going mad and getting frustrated because I can't do a lot of things anymore.

    i really love the idea of a comfort box, my pets (2 Guinea pigs and 2 dogs) have helped improve my mood so much, one of the dogs (Molly) loves bring cradled like a baby and her belly rubbed at same time, she is definitely one of a kind bless her! 

    @RichardVR is one in a million! So welcoming and kind!

    Thank you again and I would also like to offer my support to you if you ever need a chat :)

    Your new friend!
    Ami xxx
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Good Morning, how are you today?  Thank you for reply, very kind words and comments.

    I come on here too most days, start to speak to any body who wishes to just be motivated for the day.  It helps themselves first, plus helps me second.

    I am lonely and that is not easy to say but now I can say it.  I have written on several posts, threads realise I am not alone.

    I have made quite few friends on the forum thank you all, thank you to you my new friend.

    No one wants to be lonely and I know it is not people like me a grumpy old gentleman but effects every body.  I try to put my self in their place how are they feeling, emotions and coping.

    I am aware being on this forum you have to be sensitive, kind, caring ,not self centered, not selfish and respect the views and opinions.  I am all those things any way he says boasting again.  Which are my qualities plus modesty.

     I was told once by some one who I met in my village when I was growing up, you are not like them are you?  Refering to my family who were the opposites of me.

    All of us have faults and no one is perfect but I am here to stay.  All of us have made mistakes bad errors of judgements let us all not be judged on those bad times that have caused us pain.  Tend to linger long in the memory, keep getting reminders.

    When you are constantly getting those reminders from well meaning people or from people who see your faults, wish you harm then you need to take a look at what is happening to you mentally.

    I hope these few paragraphs mean some thing to you to stay positive, remember I am afraid a lot older than you and I have the life of experience to show it.

    I write honest and true that is part of me, have a faith do not go to Church but use the words of our Lord and Jesus to ease and comfort me.  It helps, words whether words from a poem , a song it all is good.

    One of the aspects of my life is that I have my Christian values have these but I do not do bible bashing not me at all.  Unfortunately met so called fair weather friends who would insist on my beck and call , every whim.  It was sad, caused me pain and not much respite solace in my life.

    A lot of negativity does not help even though they were disabled or ill with addiction or have other health concerns that bothered more me than them for some reason.   I had to take some action not lightly because my time was being eroded assisting them with their needs.  I did once ask if I need help would assist, no answer.

    I had to make choices that is what I had to do, I moved away, some unfortunately had died, some I had to get rid of just being tactful.  Come last year wiped the lot from my mobile.

    That is a important message in the end choose your friends wisely ,I have one good friend near me, who I can rely on  Who can I seek advice, assist soothe any problems I have.. .

    I hope you understand that you will succeed in every thing you do, I know you will.  Have faith, make some goals for yourself.  What you like to do could be some thing simple, reward yourself.

    I have done this most of my life.  There will always be bumps in the road, stones in your path.  You can choose to go around or over that is your choice.

    I am hopeful that you remain positive and up beat.  Please I hope, pray that we talk again.  Sorry if for long posts, just do write a lot.  I have a lot to say but I do it with heart, love, warmth, be honest, truthful what I say.

    Take care
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good morning @thespiceman
    Even though I had trouble sleeping I am feeling much more positive than I did when I first wrote this post and that's down to all you lovely people sending support and giving words of wisdom, so thank you!

    How are you? :)

    2017 was definitely a life changing year, not just health wise but it quickly came to light that who my true friends were. Family even. I started to put all this into perspective and decided that it was time to make changes. I began to focus more on those who truly love and care for me. Definitely made a massive difference!

    I don't have a religion but I do pray everyday for comfort and love for those who are struggling. My family are not religious at all so they were surprised when I told them I had spoken to a couple of gentlemen who knocked at the door one day. They started to talk about God and I listened and it was enlightening to hear their opinions.  They inspired me to start praying and am very thankful to have met them that day,

    No need to apologise for long posts, I write long posts too :)

    I heard a quote years ago, it's very true and I try to live by it now,
    "Pessimists may be right in the end but Optimists have the better journey"

    Ami xxx
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Thank you reply, sorry I did not get back to you earlier.  Got up late up and down today well when you are on your own.  All this talk about Valentine's Day.  Does remind me of times when I had a relationship.

    Never easy for singletons how do you cope?

    I used to have friends who were ladies who were sorted of ladies want a relationship but not really interested in marriage or taking it serious.  Which suited me because I had some one to go out with, no strings I learnt a lot.

    Any way around this time long a go sorry sounds like a fairy tale.  Decided what to do for the day, thought I know book a table for my friends to have a meal then any body who is lonely on Valentine's Day can come and meet be apart of a group.

    Have to be treated right Roses and good food, Limo and the idea started.  Some of the ladies I knew had little ones, so arranged baby sitter cover.  Had others put to who were lonely.

    Only you could think of that idea as one lady friend said to me, marvellous.  So off we went about five of my lady friends plus me plus one friend whose partner was away and was on her own.  Being the one lady friend by the way who through the years kept me level headed, there to support me, as I did for her.  

    Spent a lot of the week looking after son while she worked.  If she wanted a break I am there, give her some time with her partner, or if the relationship broke up some time for her self.

    You must be the only guy who has taken six ladies on a Valentine's Day at one time.  I never thought of it really.  Things happen I had money in those days, just always times that give me pleasure.

    May I ask to stay up beat and positive what may I ask is a memory you have.  That keeps you smiling, happy if you can be. Some thing that you recognise in yourself that you can look back and say I did that.

    I hope that finding time for prayer helps, I do every morning in my thoughts new friends on the forum.  Those who are struggling, feel their pain, understand how can I be supportive.

    It is great to talk to some one about religion.   That is not true they wish to give you an incentive to see the light, be one of them be a follower.  I have been all over this green pleasant land of ours.  Met many faiths, religions, doctrines.  All is good and we should embrace their messages as part of this country.

    Please may I say I will look out for you as I do for many of my fellow forum friends.  I come on here mornings, also some afternoons, plus evenings.

    I think evenings are the most important time to talk because I believe the end of the day to talk about what sort of day have you had.

    Also nothing ever on, TV alas my entertainment limited.  What do you like.  I like my Radio on now Classic FM relaxes me.  What music do you like?  May I ask.

    I am a soul fan Northern Soul and Motown plus other soul music, it is up beat dance, music interspersed with love songs as well.

    You might know some .

    I hope to speak to you soon talk some more.

    Take care my friend
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Hello my good friend @thespiceman

    Sounds like you were the ultimate Prince Charming! The ladies were very lucky to have you as a dear friend :) 

    I have been with my partner for almost 4 1/2 years, been engaged for almost 3 1/2 years. Sadly We are on the rocks due to my current health, even though I understand why he spends more time in the bedroom on his PlayStation, it also breaks my heart as it feels like he avoids me now, I completely understand that he has no idea how to cope or what to do for me. I do put myself in his shoes and I would have no idea how to cope if all this was to happen to him. He knows it upsets me and a year later the times that he avoids me are becoming more frequent. 

    A happy memory...it would have to be when I organised a fundraiser for the charity I used to work for. I had no idea in hpe to organise one so this was a big challenge for me. I wanted it to be superhero themed for 2 reasons, 1) I am obsessed with superheroes and 2) superheroes don't need to wear capes or have special powers, they are just extraordinary people which I was surrounded by. I had to go round the local shops to ask if they would like to donate anything to our raffle, this was a massive stepping stone for me as I was still learning to control my anxiety and I had a fear of speaking to people I didn't know. But I did it  :D:D was extremely grateful to receive so many donations from them all! The fundraiser raised just over £350! I loved every second of organising it and even overcoming personal fears, without a doubt I would absolutely love to either help organise or to be a part of another. That is definitely my ultimate achievement :D 

    Thank you for looking out for me, I smile when I read discussions and recognise usernames because others get to receive amazing support and advice :)

    Due to being moderately/severely deaf I am no longer able to hear music, I can just about hear the beat of songs but cannot hear what they sing. I adored listening to music growing up, so my brain is my music library lol! I loved all genres of music, loved boy bands (Westlife, Boyzone), country (Dolly Parton, Kenny Rogers), singers from my mums era (60s - Cliff Richard, David Cassidy and The Osmonds) and even one or two opera/classical songs. 

    What has been your greatest achievement? :)
    You mentioned that you like Italian cuisine in an earlier post, are you a good cook?

    Your fellow long-post-writing friend :)

    Ami xxx
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Thank you that's good then you see that is what I do, have in my folder I created one all the good times.  Look at them positively.

    I am sorry about your relationship.  This hard for me as well talking about then the times when I could go out be among people who love and be with friends.  It is never easy is it to explain and to be expressive how you feel about a loved one.

    I can not go into depth never can really when I am talking about relationships I have had.  That is me the mystery man.  Just glimpses and think that is what needs to said.  Enjoy the special moments, the up beat joyful times you have.

    Things and situations change as people do.  So I have been their and so much do realise every body has an agenda and have to move on.  

    I reminisce a lot when on my own.  Problem is in life especially our community the difficult and some times unease of trying to be understanding at all times if you have a partner who sees the disability not you.

    This never my fault or yours may I say.  It is in my long life experience so hard to overcome when a partner is finding it a struggle to come to terms with illness or disability.

    Please may I say agree with you there, Out there are Superheroes and heroines .  Unfortunately they never get the recognition they deserve.

    In my constant thoughts are my Medical Teams I have when I was in hospital all those years ago.  In those days went to London have genetic disorder of hands, feet fingers, toes missing.  Went in to surgery, had to stop it because the IRA had bombed hotels and injured many.  This was early 70's  My doctor tended many who had lost limbs and I had to say to him, as he saw me that day.  Put them first not me  I still remember him all these years.

    The addiction rehab staff who got me through off the alcohol and drugs.  Tireless work at times long hours to give us all a life again.

    All my support workers all lovely ladies working long hours and not much time to share.  Spending the days trying to assist me and give me independence, even though not in my life now.  Still awesome respect.

    My teachers two in particular whose devotion and energy helped me cope with the situation with my mother and family.  Those patience, tolerance wishing me well, giving me positivity and inspiration to move on.

    My councillors several who I had to explain very carefully, slowly and heart breaking emotionally about how my family effecting me and my life

    I must apologise I had problems in my family especially my mother.  Very powerful domineering, controlling, abusive person.  Effected me mentally.  Sorry if you have a mother is the opposite of all that I hope you do.  Please be grateful.

    I know about the 70's music sorry you can not hear, part of the disability is losing hearing loss plus deafness.  Sorry you had written about that.  My mistake forget what I write have to look what I say .

    I play a varied selection of 60's and 70's also easy listening stuff, as well my Soul stuff.

    I can understand how hard it is to hear anything, some days I myself have been told no real help, have to try to adapt much as I can.

    Watch old films new ones can not see or hear what they say.  Sub titles.

    I am a avid Chef I suppose if so wish to call me that.  My joke Gordon or Delia or Nigella call me.  Doing Beans on Toast need help got the beans stuck in the toaster.

    I cook Italian Cucine Pavore plus food of the Med hence the user name.  This my believe certain herbs and spices benefit health wellbeing.  I also adapt recipes for not only myself.  If any body who was in my circle at the time.  Wished to cook want as short cut, easy recipes.  Would suit them to their disability or illness.

    Using kitchen gadgets ingredients, short cuts time savers.

    If you wish to have at some of my recipes on Coffee Lounge, doing Saturday Nite Take out for people to cook something easy to do.

    Please can I ask what do like to eat.?

    Please can I ask what else do like doing.

    I know it is hard for you some days just want you to know am here to listen, just know I talk to your on your wall if that helps if you wish or send message to mine

    I will be here if wish to ask me anything just chat.  I appreciate your replies.

    Take care speak to you soon

    Your friend


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Hello my good friend @thespiceman

    I fully respect your privacy :) I remember all the good times that we have had, we always always laughed, most of the times at each other but that's the way we were and it made us happy and love each other more every day. He taught me how to smile, laugh and love again after a previous abusive and controlling relationship. I will always be thankful for that.

    I am so sorry to read that you had problems with your family, I too know how you felt, not my mother but my father, he was mentally abusive, controlling, manipulative, physically abusive too. My mum is my heroine, she is my best friend, she's not the sentimental type but her actions of how much she loves and cars for me is out of this world. I never take her for granted, I cherish each second I get to spend with her,

    Also due to my central vision loss I am unable to watch much anymore, things like the news or programmes that don't include a lot of movement I am able to watch. Nor can I see the subtitles but it's OK I have come to terms with it now :)

    I would use inbox but I have no idea how to start a new message, more than welcome to send me a message! :)

    Please do not apologise as I feel comfortable talking about it but I was anorexic when I was 14/15. My diet is not the best but I will say I love simple food, I do have a fear of trying new foods but I  am very slowly getting there. Nonetheless, I will have a look at your recipes, hopefully will be able to try one once I've beaten my fear :)

    Alas, my cooking skil.s are shocking, well was as I can no longer grip utensils, I always burnt beans, but I made the best scrambled egg on toast, wasn't for me but for my partner. I used to love baking cupcakes but as soon as they cooled down they were gone because of everyone taking not one but two or three at a time, I was rarely lucky to be left with one for myself but I didn't mind as it made me happy knowing everybody loved them :)

    Due to all my symptoms I can no longer do much. But I take solace in what I used to be able to do and was lucky to be able to do them. I was an avid crossword lover, was lucky to win £50 in shopping vouchers from a crossword competition I entered a few years ago. That's where I've learnt most of the big words from haha. I loved drawing, especially Disney characters, hopefully if I find pictures of them I will upload them. 

    There iis one thing I can do and hope to continue doing. I was bought a camera for my birthday, my family asked why do you need a camera when you can't see properly. What I am unable to see, the camera can see. I cannot see faces but my camera can, with my camera I can take as long as I need to use a magnifier to study faces and enjoy the moment that was captured. I do hope that when I am able to get around the garden that I will take new pictures :)

    You too, take care, dear friend

    Ami xxx
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Thank you for reply, I understand situation with your disability and lifestyle.  I most admire your courage and strength to try coping with everything.

    I see from reading about yourself you what to be independent not hold back and give a go at new things.  I like that.

    I believe every body has a skill or talent that does not only their well being good but can educate and use their knowledge to benefit others.

    My skill is to make people aware of how to create healthy meals on a budget.  Using herbs, spices.

    I know you have done well so far since we last talked.  Very aware of yourself still take small steps.

    I do wonder if there are utensils out there that you could use.  I have to find out for you if you wish, do not mind.  It is good that have baking and have tried other recipes.

    Yes I am sorry about your problems with food, I thank you for sharing.  I acknowledge that it is difficult to say our problems or issues out in the forum.

    It is never easy ,i understand the issues.  Having an addiction history related to alcohol mainly, started drinking not really eating.

    Dropped down to seven stone nearly had to go in hospital because of this.

    I have recovered of course but the memory lingers.

    By way buying a camera for using to help you deal with life .  I say why not any thing to support you and make your disability much easier.

    There must be other equipment and solutions to assist you to cope.

    I know on this website there are advisors might be worth a chat.  Plus our forum members come up with solutions.

    I am myself always looking for easy, quick fix solutions to make my life simple.

    You like drawing the helps you I assume, mentally.  I used to draw and paint relaxation for me.  Unfortunately much of my life spent battling people who seem bent on my destruction of my happiness.

    Did painting courses but ran into people who were competitive painters all the time making unfair critical of my work.

    Did not want me there only disabled person attitudes all wrong to me. stopped going.

    So I have an interest in Art.  Especially Italian Art.

    Talking of TV I suppose that is struggle for you not easy.  I will admit like doing this talking on line.

    Nothing on any way I use TV for educate learning but very limited for me as well.

    Get disturbed mentally by a lot of TV content.  At the moment Winter Olympics are on bored me silly, what is the point.

    I get more happiness talking to my friends like you here.

    Hope keep safe have a pleasant evening, speak to soon.

    Take care.
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  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Just saying Hi @janejr, @thespiceman and @Ami2301 Have been absent all day, but have enjoyed reading your posts on here. Hopefully I will catch up with everybody soon :)
    Warmest best wishes, always,
    Richard

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @RichardVR Thank you for kind words.  Hope you OK . Great , good speak to you when you are free.

    Lots to talk about as always.

    Have a nice day 

    Take care
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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Hello @thespiceman

    Please forgive me for delayed reply, had a bad nights sleep so have been napping most of the day.

    Thank you for your lovely words. 

    I am always searching for aids/gadgets/etc to try, if you know/find any please do let me know, would really appreciate it! :)

    I also admire you for overcoming your addiction, and the way how you stay positive inspires me :)

    I would like to say a massive thank you to @janejr and both of you gentleman for your amazing support since I have joined :)

    Hello @RichardVR hope you are well! 

    Ami xxx
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 How are you.  Thank you for reply.  Sorry you have had a bad nights sleep.  Don't worry if you do not reply.  Just when you are free.

    I have a lot of tiredness and get worse mainly at weekends.  I live each day trying to cope.  I am afraid it is the result of my addiction plus my medication.  Just being honest.  So on days at the start of the week, I have to plan for those days when not good.

    This includes simple food for the freezer, usually soup, meatballs I used to make them.  I found cheaper to buy them and make a sauce to freeze.  Nothing wrong in that.  Ragu sauce for pasta, curry sauce.  I have them done each day.

    Done most of what I have done today for freezer.  I will have left over chilli and pasta sauce.  Putting sauces and meatballs in zip bags helps me.

    I have no support now even when I had you have to rely on your senses well being plus common sense.  The system of support works best if you can possibly help yourself.  It is not easy and understandable that people get frustrated with trying to get help they need.

    That is why often long gaps between support workers.  In their eyes am OK will not really give me some support.  When they do it is limited for a time.

    If and when I ever do find any thing useful for you to use.  I will let you know.

    It is great also to have your Mother for support.

    May I ask do you think you need some support or do think you can cope.  I say that because once a while it is always useful to acknowledge I have a problem.

    Also see what help and advice is out there to still have independence, have a fulfilling life much as you can.

    I struggled myself your post when it came up I had to contact you and could identify what I am going through.

    I had to speak to some one.  I know you have the support of your mother plus all your friends here, always have that.

    I had to do this because mentally plus physically not good.  I am a proud gentleman,, asking for support is never easy.

    Thank you for my Doctor and a friend who realised I need to look how I can benefit myself in being well.

    I know reading your posts and stories you are to me remain up beat and positive.  It is how you are inside that counts. 

    I hope I can be of help ready to listen.


    I hope you take care always in my prayers
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  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Just saying hi, folks, @thespiceman, @tobyrosco21, @janejr, @Victoriad, @Ami2301

    It's been a bit of an unusual week - my good lady's been taking some time off work (unusual) and has insisted that the two of us spend some of that free time together. I really don't get the point, myself :) And then I've been trying to respond to newcomers to the site, too, we seem to be getting more and more!

    So I'm losing track a bit, but things will soon be back to normal. I'm okay, the cats (Rosie and Daisy) are okay, my wife's okay, Mr Fox keeps visiting the garden and the residents of our house are all pretty much okay too.

    I hope everybody else is okay?

    I'm sorry you had a bad night, Ami, and hope you're recovering. Very interested in your comments on photography. Are you aware of the Disabled Photographer's Association http://www.the-dps.co.uk/? I haven't been in touch with them myself but I know they have been around for a long time, and I think they can help in - for example - getting adaptations to hold a camera steady on a wheelchair, and things like that. Back when it was all chemistry, I used to teach photography, and these days I use digital cameras extensively. If I can help you with any photographic/equipment issues you may have, just let me know.
    I SO admire your courage, Ami.

    Hi @thespiceman and good day to you :) Your planning and strategies amaze me. Especially, not not exclusively, your planning around food. I just can't do it. Of course, I'm not helped by the fact that our kitchen is so small that if we brought one of the guards here from Buckingham Palace he'd just assume he was on duty. But no, you are admirably organized, and clearly very much a gentleman. 

    That's a word one doesn't hear so much these days, but it is good that people like you are helping to bring it back into currency

    So, still here, still listening,
    Warmest best wishes,
    Richard


  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good evening @thespiceman

    Hope you are having a relaxing evening. Thank you again for your kind words.

    I struggle with everything. I cannot manage on my own at all. I've been debating whether or not to be open and frank about what I struggle with, at first I was embarrassed that I could no longer do things but I've come to terms with it now so I'm not afraid to say. I drink out of a toddlers beaker due to me constantly tipping cups over because I can't grip them properly. I have to have my food cut up for me as I cannot grip cutlery properly. I also need help with toilet needs and washing. As much as I am appreciative  of my mum helping me with all these, I do sometimes wish my partner would help more, take the load off my mums shoulders. I do thank her for every single thing she does for me.

    Good evening to you too, @RichardVR

    Hope you are having a pleasant evening and thank you again for your kind words too :)

    Thank you for telling me about DPA I will read about it soon :)

    Ami xxx
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @RichardVR Good evening lovely to hear you.  Well thank you for kind comments.  Funny thing just came on to forum.  Bought new CD Gladys Knight and the PIps.  Then the song came on You re The Best Thing That Has Happened To Me. 

    I think it is a suitable song to express my thanks to you and the rest of the forum ,my new friends.  Apt first line of lyric we had our ups and downs. Really good singer and the story is a sad one in the sense, sorry another music history bit here.

    Went to Motown with herself and the Pips who were all family by way.  Any way had 17 songs of which many of us are trying to find.  Never released I have several manage to find.  Did the original I heard Through The Grapevine before Marvin Gaye sang it.  It was not a success I have the version and it does not sound like Gladys at all.  Speeded up and totally different.

    Never a hit, for the label. Then Marvin got hold of it and made history with it. Motown had Diane Ross and The Supremes who were the main ladies of the label.  So they got the pick of the songs, production plus writers.  Any they did not like or were rejected went to other female groups.  

    In the end Gladys and the Pips went to Atlantic and Buddha created memorable soul tracks, upbeat and hits.  End of music history bit.


    Thank you commenting about my planning around food.  This my illness talking in my head.  I have to be organised in case I am ill, my benefit stopped in cases that has happened, plus also be aware if I am ill my friend I have no one here to help me.

    Did you read the story in the media about an old lady who was trapped in her bath for three days.  In my life had such severe illness especially colds that turn into flu .  I ended up bed ridden for a week.

    So I am at this time, living in a house with stairs,  I am ill in bed come down stairs I had to need some thing.  Then a loud bang heard it again and again it is the police with one of those battering rams.  Trying to get in because I had one good neighbour who had not seen me for a week.

    We used to look out for each other.  Thought you were dead.  My friend up the road one day we speak now and again come down to find me sick, very concerned.  This was in the days of addiction.  Problem is as I age slowly I have a constant fear of illness.

    You do not know inside how much damage you have done, addiction causes.  I have had friends been clean one or two years then get a simple infection cannot cope body.  Went into shock and heart cannot take it.

    That is my biggest fear not easy to say.  Made funeral plans.

    I hope you are OK it is good to spend some time with loved ones.  Valentines Day always a reminder when I was in a relationship. Not easy.

    I hope you have special times, life is so short.  Been to the parks.

    I try and stay positive and with my new friends here especially you good self.  I will be always grateful for listening to me.

    Take care

    Your friend

    The Spiceman
    .



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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Aimi2301    Good evening How are you? Thank you for reply, thank you for being honest on how you cope.  I understand the situation.

    I am always concerned for people in our community who struggle and find it hard to do daily tasks.  This because I was once in fact many times in a similar position.

    Often illness, addiction plus lately my disability some days.  Usually gripping kitchen utensils and always spillages.  So I have to be a planner who before I start anything, got this, need that.  This why I write recipes down.  I have to rely on my sense of judgement.

    I can understand your situation , use fork and spoon hard to cut up food.

    I am sorry you partner can not do more for you.  I used to have friends who had their parents as carers.  Carers need a break I was reminded one time, so only stepped in to do what I could.  I suggested it, just an idea.

    It was a gentleman much like myself just did casual duties like preparing meals.  The simple stuff nothing personal.

    When I moved to a small village had met gentlemen of a certain age who were I believe had support.  Just a visit once a week usually.  All of them had a range of disabilities physical and mental.  All of them I befriended at a  disabled association .

    I tried to do what I could, even went to Argos and suggested they all buy Microwaves, Kettles and Toaster.  Never had anything apart from a kettle well worn.

    So they could at least make tea and toast or small snacks.

    I had to show them, how it works.   I remember first couple weeks ringing me on minor hitches and problems. Which I did not mind.  I have one myself and even I get things wrong.

    I hope you have the courage to say if you need help or assistance.

    I have an issue of trust if I need anybody to help me that is me though.  I had my issues with trusting people in the past, not easy to forgive those that hurt you.

    I know you are going to be OK and all of us especially me are here to listen or chat.  Give much support as you wish to.

    Take care

    Your friend

    Hope you sleep better tonight
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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good evening @thespiceman

    Hope you are OK! I am not too bad thanks for asking :) I did manage 5 hours sleep but then was tossing and turning for rest of night. Hope you slept well :)

    It does upset me, and my mum, that my partner will not help as much as he could. I just want to give my mum a break as she never has time for herself.

    You are the most extraordinary man I have had the pleasure of meeting, your kindness and compassion for others has no boundaries, you are inspirational my friend :)

    Your friend,

    Ami xx
    Disability Gamechanger - 2019
  • bevt2017bevt2017 Member Posts: 353 Pioneering
    Hi @Ami2301
    Sorry I've only just got your message! (I didn't even know you could do that) :o
    Your not alone sweetheart, you have lots of support here from the community. 
    So If you need to talk again, you know were I am.
    talk to you soon
    bev x
  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Hi @thespiceman. Good to hear from you, and thank you for your kind words.
    I suspect that Scope is one of the best things to happen to me, too. It has certainly introduced me to some very special people.

    I listened, of course, to Gladys Knight and enjoyed it - another blast from the past, and I'm reminded again of how important and useful music is to me. There are some pieces that still break me up after many years because of their significance at a particular time, and they're very useful if I want to get some tears out of my system.

    Being able to post web links in these conversations makes me thing we should be able to post Youtube videos here, allowing us to share favourites. I must make enquiries and see if that is a legitimate way to use the forums.

    Your historical insights are always fascinating.

    I never saw the news report you mentioned, but I do know that this happens, that people get forgotten about, ignored, isolated. I trust that you would let me know if you were in difficulties?

    I'm not a great fan of Valentine's Day, or Mother's Day, Father's Day and so many other 'Days' really. It seems to me to be mostly contrived stuff designed to sell gifts and cards in a world that seems to value nothing it cannot sell.

    My 'special times' have dramatically reduced in recent years. Now they're mostly about being 'here' at Scope, talking to people who matter to me, or being in the park with the birds and squirrels.

    It's a privilege to know you, my Friend.

    Warmest best wishes to you,

    Richard
  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Hi @Ami2301

    I am glad to hear you got some sleep, only sorry it wasn't for longer and more comfortable.

    One notices, over time, how many men 'let the side down' when faced with disability. So many mums of disabled children are single parents, often because somehow the father's just cannot handle it. I think we do not train our boy children well.

    Reading of your struggles, I am again struck by your courage. You're probably not aware of it yourself, but it is clear to others of us. I'm sure you will have heard of these people, but I'll put in the link to their website just in case - they're the Disabled Living Foundation http://www.dlf.org.uk/  Very useful for gadgets like drinking vessels and utensils with specialised grips.

    And you're coming to London. I live here - an hour, anyway, from the centre by train. If you or your mum would like to see a friendly face down here just get in touch and I will do whatever I can.

    Warmest best wishes to you, always,
    Richard
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 How are you ?  Thank you for kind comments and words.  I am an old fashioned gentleman who cares very much for people in our community who through adversity and will power determination to cope what ever hurdles and barriers that they come across.

    You are one of these amazing people I realised that as soon as read your first post.  I always be here to chat, talk anything you wish. 

    It is a pleasure to meet you.

    I hope you are sleeping OK.  Some times the mental problems and anxiety can effect sleep patterns.  There are suggestions of trying to do a bed time routine.  I do this much as I can.  Sleep is an important part of our lifestyle.

    Other factors can be diet, eating to close to bed time or certain foods do effect sleep.  This include spicy food plus too heavy meals.  Certain foods contain an enzyme that work to make you sleep.  These include wholemeal toast with honey, warm milk with honey, beans pulses, lentils.

    I have been too going on line too late and brain does not have time to switch off, so you have to wind down.

    Play relaxing music .  I hope any of this helps.

    I do know I struggle with sleep some nights extremely difficult.  I am afraid I had my lifestyle when I doing my addiction days.  My nights were days, my days were nights.

    I had  episodes of sleep walking so I know how sleep is serious thing if you can not drop off as they say.

    Please can I ask what have you been doing to day.

    I have to say I had a strange day, keep thinking todays Saturday.  Only me, also get this have to check my diary all the time.  Daft I know, woke up what day is it today.

    I will have to put labels in my clothing to remind me who I am.

    Made some Ragu and dropped the stockpot over the hob as it slipped through my fingers.

    Fortunately spillage of Ragu not much.  Used loads of paper towels, cloths.

    So got that sorted.

    Please I hope you keep safe and look forward to talking soon

    Take care my friend


     


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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @RichardVR Good evening how are you?  Thank you for comments and words as always.

    I will let you know if I have situations that are difficult.

    This my point there are loads of gentlemen and ladies who are like me.  Live a life of isolation.  Few years ago contacted my housing association, what can they do for me.

    Disability support, mental health.  In the sense of providing what do I do if ill.  Nothing diddly squat as they say.  Yet I had asked them many times.  I do know that in the magazine they have.  Giving every one who is a staff member a pat on the back, forget us the tenants.

    I do not know how is my housing officer is, change that much.

    My friend I agree with you all these days to celebrate wall to wall coverage.

    I meant to ask do have pieces of music that are memorable for you.

    I hope you do not mind asking.

    All of us do I have so many.

    Off the top of my head Memories by Elvis Presley

    Can't Help Falling In Love by Elvis as well

    And I Love You So by Perry Como

    When I'm Gone by Brenda Holloway

    Sitting on the Dock of the Bay and I've Been Loving You Too Long by Otis Redding

    That's Life, Fly Me To The Moon, by Frank Sinatra

    I've Gotta Be Me Sammy Davis Jnr.

    All songs that are sentimental and have meaning, hope you enjoy listening to them.

    I hope you have quiet night and I shall talk again.  Hope to speak to yo at weekend if not later.

    Enjoy feeding the birds and bees in the park

    Take care your friend.
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  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Hi @thespiceman

    "I will let you know if I have situations that are difficult." DO!

    I think some of what you are saying relates to what I was saying about the 'professionalisation of care'. Caring is a 'job' or a 'career' and - perfectly logically - it has to be paid for. Because it is often extremely hard work, it ought to be paid well, but often isn't. To make money stretch to cover their needs, organisations often pay the lowest wages that they can and recruit the minimum number of paid staff to cope with the workload. Big caseloads - in whatever the service - increase the probability of errors, and that increases the level of stress and anxiety in those doing the job. It encourages people to accept ridiculous contracts, travel ridiculous distances in ridiculous times, work massive overtime or take their work home with them, and risks burnout.

    Because professionals carry the can, in the end, they can be very wary of using volunteers, even when volunteers are available. Volunteering as such seems to be very much in decline. But if you do use volunteers - as a rule - you need to devote some of your scarce resources to making sure those volunteers don't screw things up. You have to make sure you're not recruiting Jimmy So-viles, for example, and that involves things like paying for Criminal background checks and maintaining careful supervision of voluntary staff.

    If my experience of years ago is anything to by, it can also be difficult for would-be volunteers because of the limitations placed on what people out-of-work can do.

    I suspect the problem relates to capitalism as it has evolved in Britain, and I believe there are solutions but society is very slow to find them.

    When I found Scope I was actually looking for work with children like my daughter. I know how life-limiting it is to have a child with such a condition and wanted to be able to volunteer some time supporting families by looking after their kids at home whilst they went out shopping or just for some free time together. I haven't found anything. And going to my local Council for Voluntary Services, I discovered that this once pro-active organisation now limits itself to providing lists of charities that I can find anyway by using Google.

    This is part of the reason that Cameron's 'Big Society' idea never took off. So now it is down to us as individuals to do what we can.

    Music that matters to me?

    Boris Gardiner's "I wanna wake up with you". No 1 in 1986. Came to prominence during the first weeks of my daughter's life, when she was mostly in and out of the Special Baby Care Unit and then the Children's Hospital. I wanted to wake up with her at home.
    Freiheit: "Keeping the Dream Alive", You can probably guess why.
    Abba "The Way Old Friends Do" Thought this was an anthem to my then wife and myself, till she left me (for a younger woman) and discovered it was the anthem for my present wife and I.
    "Flower of Scotland", ideally on bagpipes, which was the music to which I got married for the second time.
    As a military historian who feels a great debt for the sacrifices of others, there is a lot of music with military associations, sometimes old songs, sometimes from movies, that mean a lot to me. 
    These include most of the tracks from Oh What a Lovely War, 
    "Ich hatt einen Kameraden" (I had a comrade), German WW1 song.
    Beginning and End titles from "Glory", the movie based on the 54th Massachusetts Regiment of the US Civil War, the first regiment of black regular soldiers committed to the war.
    "Dry Your Tears, Africa" from the movie "Amistad".
    Many, many others.

    I'll be listening to some of your recommendations asap. But it must be bed-time now :)

    Hope you sleep well.
    Take care.
    Warmest best wishes,
    Richard

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @RichardVR   Good Morning how are you.  I agree with your comments about the care sector and volunteering.

    I have been there I am afraid, another aspect of my life.  I never said I signed on wished to look at going into health related, care related employment got recent qualifications.  Recent about ten years old.  Any way all these vacancies I barely touched were for direct payments.

    Where the clients pays for services out of their benefit.  Personally came across this from a ex friend who I had to remove from my life.  His attitudes to his support team.  I am paying for it he hollered at me down the phone I recall.

    Volunteered a long time again started doing it when I was about 18 into disabled charities.

    Usually befriending schemes problem was what you said we were being used to replace staff.  Stopped a lot of them, continuing on and off.  Each charity had expenses, then to claim.  Got a lot of issues around staff members who believed disabled should not befriend disabled.

    Stopped me making problems around expenses.  Putting out to help people was my main aim but some people started to treat me as a taxi .

    I was a volunteer driver that included staff.  I was costing one charity over £100 a month.  Had to say to me in meetings give you a budget of this amount.  In realisation I was being used.

    Had to cope with abusive clients who every turn make complaints against you for every little minor issues.

    Walked away and did gardens that it started again last few years or more, had enough cottoned on to some of these volunteers who  met .  Bullies, controllers, nasty pieces of work.

    In the end walked away had just about all I could take.

    Which was a shame because it was helping me socially, mentally.

    I did not you like military history.  I live in the North East I have been to the DLI museum in Durham.  The Durham Light Infantry.

    Have fond memories of going, most of these museums collections now in limbo.  When I buying and selling collectables.  Big military fairs in Leeds and in London at one time.

    So I meet a lot of the collectors usually exmilitary lads finding anything on the local regiments around here.

    Very interesting topic got to know about the pals regiments in the North west.  Where whole loads of friends signed up WW1.

    I like your music choices.  Worth a listen thank you very much.

    I hope to speak to you soon 

    Take care

    Your friend
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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Hey @bevt2017

    i didn't realise how it worked until I remembered that I have the screen set to maximum zoom so I forgot there is the other side of the page lol! 

    Thank you my lovely!  <3

    Ami xxx
    Disability Gamechanger - 2019
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good afternoon @RichardVR

    How are you? I hope you are having a good day so far :)

    Sleeping was much better last night thank you :) Hope you slept well too!

    Thank you for telling me about DLF, another that I have not heard of but keen to find out more :)

    Thank you for your lovely words, I never see myself as having any courage, another quote I often think about is "You don't know how strong you are until being strong is all that's left to be" I am physically weak, but mentally, I am growing stronger by the day (I don't mean to sound big headed) and that's due to all the amazing support I have from my family and you lovely people! :)

    Thats really kind of you to offer, I shall speak with my mum and hopefully we can arrange something :)

    Ami xxx
    Disability Gamechanger - 2019
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good afternoon @thespiceman

    I am OK thanks for asking, how are you? :)

    I slept much better last night thank you :) Hope you had a good nights sleep too!

    Being old fashioned is the best way to be (well I seem to think so!) :)

    I have had difficulty sleeping at night since September last year, had a very scary experience. I had a bad reaction to antibiotics which resulted in me being took to hospital (by ambulance, my first time in one) and being monitored til early hours of morning. I have trouble sleeping between 12am til 5am, it's slowly improving, having more good night sleeps than bad night sleeps. 

    I know exactly what you mean, I too think it's a day ahead. 

    I admire how passionate you are about cooking! I've never tried ragu sauce, what is it like? :)

    Yesterday I had my wheelchair assessment, hopefully it will be delivered before I go to London :) then spent most of the day napping. Today, well soon, my mum and I will be going into town soon to print some photos off for my nan. Hopefully have a look around shops too, not that there's many but just something we like to do together :) How has your day been so far? :)

    Do you have any tattoos? 

    Your friend,

    Ami xxx
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Hope you are ok.  I did not realise last night you said you are going into hospital.  Sorry I just want to know that everything will work out.

    I have been several times more like a quarter of my life.  So I can imagine right now you are feeling anxious.  Any body would be.

    My thought and prayers will be with you.  I wish all the best and to reassure you that the care you will receive, I know will be OK.

    Thanks for asking about me.  Weekends always hard to overcome and I try to catch up on housework, plus tidy up.  I need to do something a bit of exercise. I have no hoover so it is sweeping the floor.  I have vinyl easy to clean.  On with the Marigolds and a bit of upbeat music away we go.  Take my time, usually few breaks.   Into Sunday as well.  Pressing engagement my Ironing.

    Weekends get frustrated more with myself some days are bad.  Just had a request some on asked about Spices.  Anyway thought I do Tagine Moroccan Stew typed it all out.  In  Coffee Lounge near the end.  Pressed some button to correct something.  My fingers not good typing today, stuck and then wiped the lot off.

    I will redo it again sometime this weekend, I hope.

    Ragu Sauce is a tomato based sauce in Italy with tomatoes, onions.  Can have carrot, celery sticks diced red wine not for me or white wine.  Some regions of Italy use garlic some do not, some use peppers.

    You can have chillies in it.  It is simple sauce to make.

    I am glad you are by way bit better sleeping, it varies for me.  Lots of trials and errors.

    Do I have tattoos no I am afraid not, too hairy.  Sorry if I put a picture in your head.  No room hairy little monster I am my joke.

    I won't ask you  I am a gentleman .  I never ask a lady.

    Also great wheelchair working out, is it a powered one.  I have used one a few times.  Hard at first with my hands.  I can walk have walking issues.  I had on when I ill and had problems walking.  I am afraid I had muscle wastage due to addiction.  So they offered me sticks and wheel chair.  That was a while ago.

    I manage to be better now still problems walking have got muscles back in legs and lot has changed.  Took me about ten years plus to sort myself out.

    All I can say take you time recovering and small steps.  We as a community want you to get better.  I am a lot older than you may I say and it has taken me about ten years plus.  To recover.  I have bad days, good days so I am afraid that always will be there.

    The main thing you have your Mother around you.

    I hope what ever you are doing today or tomorrow take care.

    I hope to speak again I assume I will speak to before you go into hospital.

    In my thoughts and prayers.

    Your friend
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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good evening @thespiceman I am ok thank you, how are you? :) Thank you for your well wishes, I appreciate it :) I don't feel as anxious as I thought I would be - ask me again the day before and I most likely be a nervous wreck, but I keep telling myself that this needs to be done. I never thought I would say this but I really miss cleaning, and even putting a load in the washing machine, just the independence of little things I do miss. I can imagine your frustration when that happened! Hopefully one day when I feel brave enough I will try a ragu sauce, when I do I will let you know :) Thank you for being a gentleman as always :) I will tell you anyway - I have a butterfly on my left wrist. Had it done in 2013 - wanted something to symbolise the struggles I had faced over the years (Anorexia, Abuse, Bullies, Depression, etc) and that I had overcome them. Butterflies have a special meaning to me, They are truly beautiful :) No it's just a standard wheelchair but with bigger wheels at the back and foot rests. The one I currently use was my step-grandads, my nan was going to get rid of it (he died almost 9 years ago) but due to my balance and walking quickly deteriorating I was desperate for a wheelchair, so she gave me it , she couldn't find the foot rests which I didn't mind I was just extremely thankful for the wheelchair. I wished for bigger wheels so I could gain some independence back, move myself so it can give mum a break from pushing me all the time. As long as the WiFi in the house is working then I will always be on here - apart from when I am asleep! Thank you I hope you have a relaxing Sunday :) Talk soon, my dear friend :) Ami xxx
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Good evening thank you for lovely words from a gentleman to a lady.

    Understand I have been reading some of the post about going into hospital.  If you do not mind plenty of advice there.  Support, kind words, messages.

    I forgot to mention a lot of hospitals now have chaplins to do prayers and anything else like communion and it helped me when I was in hospital last time.  Useful to talk some one like a chaplin , very soothing.

    I know you be OK.

    Tattoos a butterfly that's really nice.  I am admit not a big fan of loads of them all over the body.  I am old fashioned gent.  Not bad like that if it means a symbol or means something that's good is it not.

    I like butterflies.  I have been to a butterfly park where you can walk around and butterflies fly.  It was some sort of tropical park with heated rooms.  Those large ones very beautiful to look at.

    I hope you can get about safely in your wheelchair.  I suppose your Mother is guiding you.

    I just want to say thank you this week for giving me a chance to talk with you.

    I have made a friend, please can I say also hope you are feeling better and I have been of some use.

    I hope you get a good night sleep

    Always in my thoughts and prayers

    Your friend The Spiceman



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  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    So lovely to hear from you, @Ami2301

    I'm okay, thank you. Miscellaneous aches and pains, but embarrassingly insignificant compared to so many people on here.

    I'd pretty much forgotten about DLF myself until I did some research, but I did some temp work as a warehouseman/dogsbody with my local authority's disability services and encountered all sorts of gadgets and gizmos that were DLF related. If you haven't already done so it might be worth checking out your local authority website to see if they offer any services.

    And the last thing you could be accused of is being big-headed :) Courage, bravery and related words are a bit odd, in a way, because people think they know what they mean and often do not. The chap who charges the enemy lines, under orders and with a rifle in his hands, may be very brave, but he may also just be dim and unimaginative. Would he do it if he really understood what the potential consequences were? Whereas someone like you already knows the consequences and can only too well imagine what other consequences may develop. You don't even have to have much of an imagination or understanding of anything else to understand what those consequences are. Yet you go on braving them, go on facing them, and that, Ami, is courage.

    Proud to know you, here for you to whatever extent I can be,
    Warmest best wishes to you and mum,
    Richard
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good afternoon, @thespiceman How has your Sunday been so far? :)Ithaca I am extremely overwhelmed with all the love, advice and support that I have been receiving! Thank you all :) I too have been to a butterfly and wildlife park, when I was younger, they were in a heated room/area too. It was a beautiful experience seeing all these butterflies fly around, eat fruit, settle on leaves etc. Sadly I think the centre closed down. I do wish to visit another place like it :) The year before last, when I was out walking one day, I noticed a butterfly in the middle of the lane, but only one wing was fluttering, I checked to see if any cars were coming and then I went and picked the butterfly up. Walked back to side of the road and was just fixated by it. It had purple wings, velvet to stroke. Even though it had a broken wing it was the most fragile, most stunning butterfly I had ever come across. I placed it on the hedge next to me so it was safe. A lovely memory I cherish :) No need to thank me :) that's what friends are for :) You have definitely made an impact on me since we first spoke! I sincerely thank you for that! :) Talk soon, my good friend :) Ami xxx
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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good afternoon @RichardVR Hope you're not experiencing too many aches and pains today :) Thank you for your amazing and kind words as always :) I am also here for you, always :) Your good friend, Ami xxx
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Good afternoon hope you had a good night sleep, I can understand being anxious.

    Hope your Sunday going OK.

    My Sunday going smoothly for once, did dishes, little chores.  Plus washing out, got rain up here next few days. So I need to get that sorted.

    Going to any where that is some what strange like a hospital.  Maybe you will be nervous and on edge, never easy.

    One tip I always had was plan something after wards.  To try to not think about what is happening.

    I know you will be OK .You have got a lot of support.

    I like your story about the stray butterfly most considerate and caring.

    I like nature and do watch what I can regarding wildlife programmes on TV.  I just know that I do enjoy specific ones and animals, birds.

    The Blue Planet was on .  I did not watch it not my sort of wildlife.  Like Dolphins, big cats mainly Cheetahs, Tigers also Birds of Paradise, Parrots, Birds of Prey, Penguins,Chimpanzees, Gorillas

    Like many others, what do like animals?  Like my Horses as well, Elephants

    When I was a child and into early adulthood wanted to be a vet.  Too many qualifications to go to do..

    Then I enrolled as a kennel hand at a cattery, kennels.  Learnt how to care for animals, cats, dogs, horses.  Lasted into my twenties.  Then I was unfortunately not required any more.  Being a volunteer.

    Had the chance to look after many varied other animals, breeds of dog.  Favourite an Irish Wolfhound huge dog.  Lovely nature.

    I had cats till few years ago.  My mental state could not cope.  Had this Cat who would constantly attack me.  Always had Queens which are Female a lot more docile.

    This was enough I had to remove it to an animal charity.  One of those things I am afraid.

    Miss a dog but it is walking the dog ,vet bills, food care and the rest.  Some days not good would have fear that I could not cope.

    Lots of good memories that is important to me.  As it to you.  Life is so short.  I need to remember the good times.  Being of an age now.  I can remember certain memories.

    Yet can not remember what I am said to you yesterday, I have to recheck.  Played a song other day could not remember title or artist.  Had to look.

    I am glad we have met, really nice to know you.  Makes the day when some one is on the forum that sends you kind words or responses I get.

    Thank you Ami

    I hope the rest of your weekend goes great and speak to you soon.

    Take care my friend


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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Hello @thespiceman

    I did have a better nights sleep, thank you, I hope you slept well too :)

    Glad to read that your Sunday is going well, I have been replying to all you lovely people all day - OK I napped for a couple of hours haha.

    I used to love watching animal programmes, specifically the one that Ben Fogle and a woman with curly hair presented, at Longleat in Dorset - not sure if the programme is still on TV. I was lucky enough go go there during a holiday. It was amazing being up close with all the animals, we didn't drive through the monkey area as they are known for taking away car parts - our car at the time was just about holding together so we didn't want to tempt fate haha!

    Apart from butterflies...it's difficult to choose a favourite as all animals fascinate me!

    Was that your dream job? Or did you want to try something else?

    Our family had tons of animals back when I was a child. I always described it as like it were living in a zoo. We had cats, birds, fishes, Guinea pigs, hamsters. Obviously over the years nature took its place and was left with one cat. Then Christmas Eve 2005, we got a puppy, a Labrador cross Doberman, we named her Millie. I will be upfront about this, sadly she had to be put to sleep in 20116, very sudden, I'm not mentally strong enough to talk about how much she meant to me. It's still incredibly raw. I will always cherish her, the photos we have together, the times we had together.

    Chat soon, my dear friend :)

    Ami xxx
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Thank you for reply, yes I had a good sleep.  Thank you.  Just a quiet day.  Hope to chat a bit more this week.

    Look forward to talking about anything you wish.

    I used to work had jobs in Government Departments can not tell you what the role was.  Sorry still bound by Official Secrets Act.  I did not know I was till I applied for jobs.  You can say this but you cannot say that.

    Done many other jobs up to about early 1990.

    Then my ideas for business flourished.  Had an interest in buying selling various collectables.  Do you collect anything?

    Bought, sold all over UK mainly though in The North.  Now and again London and very rarely the South.

    Unfortunately got ill with addiction plus ill mentally.  So had to pack them in any future jobs.  Also other personal problems

    Still do now and again wish I had set up my ideas for a few business ventures.

    Had issues with employment agencies, funding, financial problems.

    Please can I ask have you got a dream job.?  Have you worked I think you said you have.?

    What would you like to do?

    I am sorry about your loss.  I get too attached to any of my pets so it hurts me as well. So hard to lose them.  Have none now.

     I get very emotional about cruelty and the abuse of any creature.

    It is not right that people do this.  Long over due for changes for animal welfare.

    I have stepped in few times to stop some one hurting or abusing animals.

    Even told some one about a lad stealing birds eggs.  That is really cruel and sadistic doing that harming young of birds.

    I hope to speak to you soon.

    Always in my thoughts and prayers

    Your friend


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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good evening @thespiceman How are you? :) How has your day been? You shall remain the mystery man! My partner and I collect Marvel/DC items, figures, comics, clothes, anything really - that's what bought us together, our love for superheroes. When I was at school I done work experience at Barnardos, it was the best 2 weeks of my life. So much so I carried on volunteering for a year. Then i got my first paid job as a cashier at Iceland. Worked there for 3 and a half years. Then we moved back to where I'm originally from. I didn't work for the first 8 months as my anxiety was through the roof. I then started volunteering at Sue Ryder and 6 months later I was fortunate enough to get a paid job there. Sadly I lost my job as I was no longer fit for the role as my health went downhill. My passion is charity work and I really do hope I can get more involved with charity fundraisers, etc. I get emotionally attached to animals way too quickly too. It's sickening to think the amount of animal cruelty that goes on. Good on you for stepping in and stopping them! Chat soon my dear friend :) Ami xxxx
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Good Evening how are you feeling today.  I am much feeling Monday.

    Just had a veggie yes Meatfree Monday.  On tonights menu vegetable curry with rice and chickpeas.

    Pears and custard.  Sorry you are too faraway would do instant takeaway.  If I could.

    Have you been to Comic Con I am interested in not too much Marvel Comics but I know about Stan Lee and few of the collectors I met.  I believe big fair in LA the States.

    I assume you enjoy doing that and I bet you could talk like I do about food.

    Why not?  I do think TV film spin off's are I know much in demand.  My favourite TV memorabilia was I had a collection of stills from the first series on TV. Star Trek released in the sixties when it all began..  All signed by cast the original cast may I add.

    I sold it to a private collector.  Paid me a nice sum.  Also had two photos of Batman and Robin signed by Adam West and Burt Ward.  Kept dipping in and out.

    Big fair I believe in London Astoria or was it Westminster Hall wandering around

    Spent a lot of time meeting collectors, useful to me.  Collected Elvis stuff records, books anything.  This was seventies into eighties.  Unfortunately due to personal reason had to sell..

    Then Dr Who and collectors beginning to look at Cult TV like The Saint and The Prisoner.  This was the early eighties.

    May I ask what is your favourite piece?.  One thing may I add to look out for are  Bubblegum cards and Trade cards of Marvel Comics.  These were issued with sweets and other goods like cereal packet etc.

    Not too expensive issued in the eighties and nineties worth a look.

    I find all film history and backgrounds of films totally absorbing.  How they are created.

    I am sorry what happened about your work and volunteering.

    I sure one day you will succeed, I know you will.  I can sense the determination.

    Hope you take care.

    Always in my thoughts and prayers.

    Your friend Mystery Man The Spiceman
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  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Hi @thespiceman and @Ami2301
    I'm really missing chatting with the two of you, though I'm keeping up on all your posts - it is just that I'm being really busy welcoming newcomers to the community and helping direct people to resources. I've lost track of the number of posts I've responded to, and I'm hoping that things will either calm down a little shortly or we'll be able to recruit more 'meeters and greeters'.
    Missing you guys.
    With affection,
    Richard
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good evening @thespiceman
    Have been very tired today but otherwise OK thank you :)
    Again, another meal I shall have to try when I feel brave enough :)
    My partner and I have not been to a Comin Con yet. He is in the process of getting his costume together for the next Comic Con. I would love to go but am worried that I would tire too quickly from all the excitement. 
    I like talking about it but nowhere near as my partner does. He never stops talking about it - sometimes I am glad I am mod/sev deaf because he does repeat himself sometimes.
    I don't have a prized possession yet, I do have an obsession with Loki "The God of Mischief" and the actor Tom Hiddleston. I hope that one day I am lucky enough to meet him, and to be able to collect Loki memorabilia.
    Thank you, that really means a lot :)
    Hope to speak soon :)
    That would make a great superhero name!
    Your Butterfly Friend :)
    Ami xxx
    Disability Gamechanger - 2019
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good evening @RichardVR
    We miss you too!
    The amount of new members has completely blossomed! :)
    I have been welcoming as many as I can but I just can't keep up!
    Hopefully we can chat soon! :)
    Ami xxx
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @RichardVR Good Morning How are you?  I am always here just look after others first, they are more important than me.

    May I say I believe you are not well.  I read one post had aches and pains.  That is important too, your health.  Remember @thespiceman is here for solutions and to ease, soothe any health worries.

    The main thing is to for you to use your expertise, knowledge to assist help others.

    Me and you always have time for each other.  Seeing new people to help with problems comes first.

    I caught up some new people , spoken to @Victoriad .  Gave a few recipes, chat.  Have not spoken for a while.  That was a lovely time.

    Love speaking to @Ami2301 as you can see.  Makes my day.  May I say all the people I can.

    Give them all my time, warmth, charisma, friendship.  In fact they all help me to give my day a more positive outlook.  I do not feel lonely and give inspiration.

    Thank to all of you. 

    Take care my friend
    Your doing a most excellent job
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Good morning Hope you slept well.  I might think that could be an idea for you to go if you are up to it.

    Comic Con I suppose it all depends how well you are.  That comes first.  Just could be something to look forward to.  May I say some time with your partner, spending time together.

    Little precious moments.

    Loki if I recall that is a Norse God of Mischief.  I think Jim Carrey was that in The Mask.

    I do get things wrong.

    I hope you do meet Tom Hiddleston.  You can do anything.

    When I buying and selling.  I met a few stars of Stage and Screen.  These were collectors.  If I recall.  Some of them were on TV.  I am not a name dropper.

    Very polite, sincere and I never asked for autographs.  Just me I suppose.
    What ever you are doing today.

    Take care speak to you later

    Your Mystery Man yes good Superhero name
    Where's that Telephone Box to change in it

    Your Friend

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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good afternoon @thespiceman I slept OK thank you :) How has your day been? Once I get my diagnosis and try and get my health back on track then Comic Con will definitely be a must! I think the best film that Jim Carrey was in, has to be The Mask, who is your favourite actor? Thank you :) Each role that Tom Hiddleston has acted out has been pure, magnificent and simply inspiring. Plus he is majorly (majorly times by infinity) handsome which is a bonus lol An autograph or a photo with Tom would be something I would cherish forever. I would be more than elated just to have a conversation with him - though I would struggle due to being deaf. Nevertheless, even if I was to know he spoke to me, I would feel like the luckiest girl in the universe! Same as yesterday, napping and replying to you lovely people! Why not a spice cupboard instead? :) Your catchphrase could be "What spice are you today?" Chat soon, Your Butterfly Friend :)
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello  @Ami2301 Thank you for reply, Good evening.  What Spice are you today.

    I like it.  I am a chilli man.  Known as The Chilli Man. sometimes.  Like chilli's all types and various forms.

    I just bought Tub of Harissa.  Made with Chilli's has in rose petals plus other ingredients.

    Have loads of chilli products like Tabasco, Worcestershire sauce.  Mexican Spice blends, Chinese types..  Got jars of all sorts of spices.  Have a big selection.  Use a lot.

    Always looking to add collection.  Looking at buying different spice blends.

    What have you being doing today.

    I have had a pressing engagement.  My ironing my joke.

    Tidy up.  Tired to day just had meds starting to take effect.

    Films my favourite stars James Stewart, John Wayne, Humphrey Bogart,  James Cagney  All old legends of films long ago.

    Also Fred Astaire, Gene Kelly, Judy Garland.  Orson Welles Marilyn Monroe Monroe

    Like Kate Winslet, Cate Blanchett.  Michael Caine, Sean Connery.

    I can not understand modern films need subtitles to read.

    Film on today why they put this sort of film on weekend.

    Called The Misfits with Marilyn Monroe, Clark Gable.  Romantic drama.  Clark Gables last film, died after filming.  Marilyn died a year later.

    I hope to speak to soon

    Going to sleep in the arms of angels

    Take care


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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good evening @thespiceman

    I am afraid I have no knowledge of spices apart from The Spice Girls haha!

    I have never heard of some the actors you have listed, sorry! Judy Garland was stunning in The Wizard of Oz. Michael Caine, true English gent! 

    I do love the classic Disney films, not so keen on all these new live-action remakes. 

    Hope you have a good nights sleep my good friend :)

    Chat soon :)

    Ami xxx
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Good Morning How are you?  Yes I like it Good only Spices are the Spice Girls.

    Girl Power why not?  What is happening with Ladies and the sexual harassment in the work place, equal pay.  Long over due to sort it all out.  Makes me ill to see you ladies treated badly and taken advantage of.

    I hope there is justice for all you Sisters.  No matter what, also all of us should respect each other.

    I was once told by a lad in a job I was in.  The following quote Men may rule the world, but it is you Ladies pulling the strings.  Which of course as a gentleman could agree more.

    I miss having a lady in my life to talk things over.  Help and assist on what I might need to wear.  Not good fashion sense.  Like to look good and smart, but casual.

    Need a suit or choosing the right tie contacting one of my lady friends.  Had more idea than I had.  Then afterwards lunch.

    I use by way talking of spices for my own health needs.  Spices like chilli have uses for colds for example.

    The films I like you probably won't know any, the film stars of those days.  Talking about the 40's and 50's.  Were part of the studio system.  Being part of contracted to a film studio.  Told to do when and what by studio.  Even told now with current situation, inappropriate behaviour and censorship were the attitudes then.  No one really knew what was going on.

    Many film stars were silenced by the studios.  These were big names M.G.M, Warner Bros,  RKO.  In those days also the films were black and white.  Series of films called Film Noir all shot, filmed mainly at night.  Hence the name.

    Little bit of film history. for you this morning. 

    Looks like bad weather is on the way again.  Forecast for snow cold weather.

    What ever you are doing to day have a pleasant day.  I am here anytime.

    Please can I say some days have usual household duties to do .  Will get back to you as soon as possible.

    I know sent a post a bit late, get tired a lot with illness and some days most really.  Have pain took meds plus painkillers.  Wrote to you.  Almost falling a sleep.

    Take care

    Always in my thoughts and prayers.
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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good morning @thespiceman

    I am OK thanks for asking, how are you? :)

    I do love a bit of film history :) your knowledge on many subjects always makes me intrigued to learn more! :)

    Do you have any favourite comedians?

    Weather here is dreary too, can't wait for all the flowers to start blossoming :)

    Not sure what I would like to do today yet, I am sure I will find something :)

    Take all the time that you need, I just love being part of this extraordinary community, that's why I am on here majority of my days :)

    Hope you have a good day and take it easy :)

    Your Butterfly Friend
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  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Just saying hi, @thespiceman, @Ami2301

    Taking a few minutes from responding to others' and new posts to say hello and to hope you are both well.
    Thank you spiceman, for your interest, but I don't think I am significantly unwell. I was born with a minor congenital foot defect that, but for surgery, would have become club foot, and with hammer toes. Had surgery on both in my teens so that my feet looked relatively normal but which, I think, effectively took the 'suspension' out of my body. My feet always seem to hit the ground rather flat and hard and, after 66 years of walking on them I think they and my kneecaps have got a bit worn. Compared to what most people here have to deal with it is absolutely nothing, almost embarrassing to mention.

    Wanted to tell you both that I'm still here, still listening out and looking for your posts.

    Made time for the park yesterday and managed to take a shot of this charmer. The parakeets have taken to the wild and this chap, and a lot of his young lady friends, feed easily from one's hand. Hope you enjoy :smile:
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 My Butterfly friend good to speak to you.  Yes I love being on here.
    You learn so much and we can as a community help ,advise each other.

    I do have a lot of knowledge, being modest again.  Remember I spent a lot of time being ill in hospital.  Reading my thing and then the family I had so boring holidays.  They all went to the beach.

    I ended up in libraries, museums, art galleries you learn so much, more knowledge at these places.

    May I ask have you been to any, museums, art galleries they often have some do.  I know sensory experiences.  For those like yourself with your disability.

    Where they have exhibitions that use touch, feel and use talking to describe objects.

    I think mainly in London I believe.

    Always learning new stuff.  You are teaching me as well remember.  I have learnt so much from you.  Thank you.

    My favourite comedians again it is the really old ones.  Sorry I like Sir Ken Dodd, Sir Norman Wisdom, Ronnie Barker, Peter Sellers, Frankie Howard.  Bob Monkhouse.  Morecambe and Wise, Tommy Cooper. Eric Sykes.

    In the days when there was Radio these guys ruled the air waves and had huge audiences.  All successful on TV.   Many graduated to film which helped them to wider acclaim.

    The Ladies Victoria Wood and Dame Julie Walters  Victoria Wood on TV.  Dame Julie Walters does not many comic roles.  Does straight stuff.  Stilling waiting for Educating Rita with her and Michael Caine do a sequel.  Very good.

    I love puns and play on words, daft, silly jokes.

    Went to see Tim Vine who does this The Pun Master great after about half hour then after that do not really get it.  Not funny.

    Met a few above in my time.  I am afraid the modern stuff and shows do not find it funny.

    There is a guy called Ricky Gervais who takes the biscuit in being unfunny, and makes unnecessary poking fun at our community.  Not at least impressed.

    Yes there are boundaries in comedy but should not be broken.  Find him insulting.

    Especially the money they get.  Rant and rave over.

    I hope you have a pleasant day hope to speak to you soon.

    Take care The Mystery Man
    The Spiceman
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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Hi @RichardVR

    I am OK thank you, how are you today?

    He is very stunning! Birds are beautiful creatures!

    Hope to chat again soon my friend :)

    Ami xxx
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @RichardVR Good afternoon I am glad you OK must have mistook for something else.  I do care about every one included yourself.

    Have these days, I hope you are doing OK.  Yes that is a problem for me, walking just hope I can struggle around when the bad weather comes next week.

    Time to stock up again.

    Great photo excellent.  Good to go out and see Wildlife.  We have these places up here Wetlands and Washington wildfowl Centre used to go a lot.  Great but cold day out.  Used to do a lot of that.  As I got older lose the interest.  Not much fun on your own, where the tissues.

    Got yesterday the Motobility package for my car yes, time is near to end of contract.  I just know if I fail PIP will have to consider either buying current vehicle or look around for similar. Problem is I drive an automatic and it has to be a small one, too large struggle.  Met a lad last week quite elderly got a Juke is it.  By Nissan can 't really drive it he says to me in the carpark.

     Pray and hope I succeed in passing the assessment.

    Had an extension to current lease, so this time could be limbo.

    I live in a small village no good transport links, have limited buses and the rest of the scenario.  Shops in area non exsistence, nearest good one about 5 miles plus away.

    So I hope and pray I pass if I get PIP.  Have some savings not much but enough I think.

    How do you get around?  I wonder.  Traffic a nightmare do you like driving? It is easy to use Trains, Buses.

    I have lots of country lanes to drive away and around, hell when some silly driver speeding.  Like the other day in icy roads, how he did not hit me, still God drives with me, to keep me safe.

    Hope you keep safe, thank you for your time

    Always in my thoughts and prayers
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  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Hi @thespiceman, and thank you for your words.
    I have 'these days' too, where nothing seems to come out right. Being here, meeting people like yourself and Ami has done a great deal to improve my state of mind.
    Do you know everything you need to know about your PIP assessment? There's a very good resource or two under 'Talk about PIP/DLA'.
    Living in the London suburbs I keep my driving to a minimum. I've lived in some mad driving places in my time, but London takes the biscuit. In my local area car parking is such that they pretty much have to grease the sides of our local buses to get them between parked cars. I really don't know how the bus drivers manage it, but they do. My primary place to visit is St James's Park in central London, which means a five minute drive from my house to my nearest station, then a 40 or so minute train ride to Victoria and 10 minutes tube travel to the park. It all works remarkably well, and being a pensioner the only cost involved is that for car parking at the station. It's still better to pay that, whilst I can still afford it, than stand around in the cold waiting for a bus on the return journey.
    And when I go up to town I look rather as if I am about to invade Poland. I wear a camo combat jacket and a rig of camo ammunition and other pouches that contain all my lenses and extra bits. Must look weird, but it works for me - all about weather-proofing and weight distribution.
    In my favourite spot in St James's the wild birds - our new invaders the parakeets, blue, coal and great tits, robins and some others, will flit down and eat from my hand, and between them and the squirrels they keep me well occupied.
    We have some Wetlands that I keep promising myself I'll visit, and various other large parks and things where I can observe birds.
    Great to be in touch with you, Spiceman.
    Take good care of yourself
    Affection
    Richard
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good evening @thespiceman

    How has your day been? :)

    I remember going to various museums as a child, especially school trips. Can't remember the names of the places though. 

    You will be pleased to know I have heard of all of them :) 

    My favourite is Joe Pasquale. I agree with you on that, it angers me how they think they can do that just to get a few laughs!

    Speak soon :)

    Your Butterfly Friend
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @RichardVR Thank you Good Morning.  Strange day yesterday, just I think a lot of little things, do worry.

    Had a quiet night very tired.  So afraid I did not come on here as usual.  I do know what the issue is, I am good at identifying problems.

    I have talked to you about PIP will look at everything.  I am still on the old DLA award.  Issue is waiting if and when assessment.  When the forms come will have to contact our local welfare support group.  Plus also getting help and support here of course.

    It is the little niggling doubt of what is going to happen.  I have received the car motobility package the other day.  All the information I will get much as possible.  From motobility the outcome, my rights.  Last time the guy on the other end was very pleasant.

    Extended the contract one year, this time can not do that.  Did you know it is not helpful is it not, when you look at what cars are available.  The one you drive is not available on automatic.

    So I have that to consider.  If I get PIP if and when it comes.  My little brain started to think please let me have PIP, please get me through any assessment when it comes.  Please do not leave me in limbo with out transport.

    All of us especially my age and beyond this when I would like to see rule changes.  If you are an older driver, should be accepted to get the higher rate of PIP.  Only exceptional circumstances.  If you are living on your own, have no family, no reliable source of income.  Do have savings then can be added together with your allowance to purchase vehicle in the long run.

    Over three years and beyond.  The rules are so complex and change constantly.

    This my opinion and I have said the above to the advisor on the phone.  Reaching a certain age comes with problems and issues.  Then if to be turned down at the age where the help should be there from the Government.

    I know some one who was turned down on the higher rate, got a disability in my opinion not like mine.  Now on the middle rate, gets PIP lost car.  In his middle fifties and can not go out shopping and the rest.

    Had a car for about ten years or more from the scheme.  He is different to me in the sense he has family, even so he has to be transported around.

    I think I have said enough do go on.  It is the same for a lot of our community though.  Who are reliant on this scheme its benefited me enormously and met and made more social aware of my motobility needs as I age in this increasing fragile world.  Where if you are a certain age you seem to be forgotten and treated badly with the Governments attitude towards us all.

    I will speak to soon.  Just got this on my mind you can imagine.

    I find annoying got information pack from DWP ages go about PIP and what will happen.  All it says will write to you when the time arrives.  I know people in my mental health charity have been assessed all have lost benefit, changes.  They have got PIP but different rate.

    That is the other thing do not have that now as well.  That has finished.  My support worker really good calming me down.  End of three year contract.

    I hope you do not mind, I will have to speak to if I have any worries.

    Please can I say this part of my illness.  Anxiety and the one good real thing is that I have been careful and sensible.  Have put money away savings.  Is that enough I say to myself.

    Please can I thank you for reading this, I need to talk sometimes too much.  You are amazing, patience and tolerant.

    Thank you 

    Take care my friend.
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Good morning how are you ? Thanks for reply.  Just a quiet strange day, really yesterday.

    Got a few worries about certain things re my post to Richard.  I bet you so glad to be reliant for your family support.

    I wish the family I had hoped them to be more understanding.  Instead in to a nightmare, constant abuse, torment.  I had money then was used as the feed bucket for family.

    Used and abuse any way, try to move on.  Met a family recently whose son was disabled and not very good, when out the other day.

    Shocked I still meet families who do not know the system and what is available.  I was approached by them questions ten a penny.  Constant how do you get that this ?  Saw me in my car disabled spot, shopping.  Told me briefly about them selves.

    Using savings, redundancy money to fund their sons care.  I directed them to this site and the many wonderful people of our community.  When and if I could get a word in edge ways.

    I felt not listening again I had to do my Christian duty and be patience, tolerant, understanding.  I hope I was.  It is not easy when some one you do not know shouting at you in frustration and anger.  That she and her family do not know anything.

    I suggested contact local council, still I afraid they will complain to all and sundry about their situation.  Not doing anything.  I am a listener but you have to do this I stressed to the Mother.

    I have great respect for every one in our community.  You have to try to start to look at what is best for your child, I explained.

    In the end I had to walk away.  I understand it is not easy.

    Today need to go out shopping and restock.  I believe cold weather on the way.

    Talking of comedy I just find recently some of these so called comedians.  Seem what to target the less well off, the poor, the disabled people in our community.  Is that satire or a cheap joke at who's expense.  I do think the depths of depravity have emerged in comedy if you wish to target people who are in our community.

    That is my view and opinion.  One who knows been to so called comedy gigs long time ago.  Seeing some unfunny guy making jests and may I say insults at members of the audience.  Audience not many turned up to see this guy.  Who I can not think of.  All I know was a nameless boring bloke, kept reaching for a laugh.  Horrible to watch and worse I still remember the experience.  What a nightmare.

    Also yesterday Billy Graham died he was a respected evangelist and preacher.  His sermons and his thoughts on God, Jesus worth every time a listen to.  His views on morality views and opinions well regarded.

    I use power of prayer for my own health needs.

    Always in my prayers my butterfly friend.

    Hope you keep safe speak to you soon.

    The Mystery Man The Spiceman
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  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Hello @thespiceman
    And no problem, my brother :) It's not a very practical idea, but if you were to send me novel-length posts I would still do my damnedest to read them. You are entirely worth it :) and your words give me a lot of interest and pleasure.

    I understand only too well what you are saying about anxiety and its effects on you. When I was worst affected - which was mostly during my childhood and adolescence - my anxiety was a sort of rat's nest woven out of tiny strands of anxiety. Most of the strands would have seemed nothing if they'd been examined individually, but woven into a package full of loose-ends and tangles they became at times almost fatal. I tried to end my own life for the first time when I was about 11 years old and for the last time when I reached 18 or so, though the desire to 'end it all', to escape from a world I simply could not understand and which often simply did not seem to be worth the effort, is something I've faced repeatedly through the 66 years of my life. And it doesn't help that to us, when we are able to identify a particular concern, it sounds to us as if others would find it trivial and laugh at us for so much as expressing it.

    I'm going to pick up a strand from your last post to Amy, that of 'humour'. You're probably aware that the 'key' to humour is that it's about making fun of things we're scared of. It is too often forgotten. Death and taxes, sex, wives and mothers-in-law, used to be - I think - the bedrock of 'British' humour. I suspect that while the State and its allies in the newspaper industry continue to treat the older, the disabled and the infirm in a way which makes people afraid of becoming any one of those things, 'humour' will slide in that direction.

    I understand your anxiety - and the anxiety in many in this community - about changes in benefits that can involve taking someone's mobility away. These are bad times in which justice is neither done nor seen to be done. I wish you, of course, the very best of fortune with your own application and we shall see how that goes. (Have you looked, by the way, at the frequently asked questions page in the PIP/DLA forum? You probably have but it's here, anyway: https://www.scope.org.uk/support/disabled-people/money/pip/faqs?_ga=2.229153689.405444417.1517054923-1832321402.1513208436 )

    Important to note, too, that if anything goes wrong with your application, there remains an appeal process, with something like 65% of appeals being successful.

    Your God be with you, my much-loved friend,
    Richard


  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good afternoon @thespiceman Had a rather low morning but am feeling a bit more positive now :) How are you today? :) Last year when I first came across PIP I was absolutely petrified! I had no clue whatsoever about benefits, did not understand them at all! Job centre were a massive help in pointing out which benefits I were most likely eligible for. When I first received the forms I panicked because of my eyesight deteriorating I couldn't read the questions or see where to write answers. Thankfully PIP sent me the forms again but in larger print. Got my assessment about a couple/few weeks after posting them. The lady who assessed me was really lovely - my mum had to speak on my behalf because I couldn't hear anything. Took all the paperwork I had accumulated, hospital letters, results, medical reports etc. She asked me to read the letters of one of them sight test things whilst standing up I kept losing my balance and I couldn't see the sight test board let alone the letters because of my central vision loss. So that was that. Got my decision just under 2 weeks after the assessment. I receive the enhanced rates on both components. I feel really bad because when I read that people have lots of issues with PIP, mine was straightforward. I still struggle understanding benefits but am slowly learning. Did you manage to stock up? Even though the sun is out its still chilly! I would say roll on summer but I can't stand being too hot lol Hope to speak soon :) Your Butterfly Friend
    Disability Gamechanger - 2019
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Hi Ami

    Thanks for a positive post
    No need to feel bad, you obviously deserve the award.
    To many people are denied due to the antics of assessors and not getting the help they need to fully explain their problems

    CR
    Be all you can be, make  every day count. Namaste
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @RichardVR Good evening any way glad you OK.  Just reading about how your mental health effected your life.  My friend I am glad to share and to know you.  I helps when some one has similar experiences.

    I am some days often resentful and do get days of anxiety plus depression.  A lot of it is why me Lord and how come I am here but others who were in my life.  Who had suffered relapses or illness or got close to and some thing happened.  Either they had infections and passed on or something else.

    I try to remain positive much as I can, unfortunately when I had addiction problems in the pas.  Taken a great deal of energy and time to stay off alcohol.

    Sometime in my life I had to move away not because I wish to but some one in my social circle has relapsed.  I got involved lost him to alcohol plus I have gone down with him, me relapsed.  Even though we I had met him being clean for a couple of months on my own.

    With limited resources, thought I could stop.  Only by going to clinic and rehab moving away.  This meant losing friends who all alcoholics, their families and the social circle.

    This is something a lot of us who have addiction have to do.  It is sad but I have to do.  Very stressful not only for me but for the person concerned.

    Had a friend last year met through the mental health charity,  Unfortunately I have heard through the grapevine has relapsed.  So I hope he can get sorted.  Previously a friend I had known been clean five years.  Then relapsed, contacted me.  I said make appointment clinic to help.  Told me no.  So I had to let go leave him alone.  Clear message there I am afraid.

    I understand about the taboo subjects around humour.  Never forget I used to in meetings crack a few gags and jokes to break ice in meetings.  Often pulled aside by senior manager you can't say that that is not PC.

    I know a time and place.

    Just me  I am sending I have noticed another bedtime story for you to enjoy.

    Only me I know, you must understand been out today.  Seen or spoken to no one. 

    Well one uninterested lad on the till who could not give a well bleep bleep.  Wanted to go home.  Just being polite as always.

    My stuff whizzing down the chute eggs and all.  Ready scrambled when I got home.  No patience tolerance or kindness.

    Managed to get two big bags for shopping hands, body really hurts for about a couple hours.

    Exhausted and tired so I will go leave you in peace.

    Hope you enjoy what ever you do take care

    Your friend


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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Hi @CockneyRebel

    Thank you :) My heart does go out to those who have to keep fighting and fighting for months even years.

    Nice to meet you by the way :)

    Hope you are well!

    Ami xxx
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Hope you OK yes I am glad you are being positive now.  We all have those mornings.  Perhaps you are like a butterfly and need the warmth of the sunshine to flutter your wings.

    I have to agree I wish the mornings were sun and shining and yearning for Spring.

    Plans for garden, look at herbs again.  Might get a bench do not know.  Need to do something.

    Good you got support and got your benefits sorted.  It is a complex, stressful and anxious time for all concerned.

    Been out shopping spoke to none saw this till lad who was duly uninterested in anything I had to say.

    Got a few more spices for my every growing collection.

    I know I am not a Summer person but are we glad when it is.  Life is too short.  I find sunshine lovely.  I am not a fan of humid heat.  Certain percentage humidity in the air.


    That's where spices play a role.  Chilli and other related spices cool you down.  Make you perspire but the blood cools. Science bit here.

    That is why they use them in countries that have high temperatures like India, Mexico and Africa.  Other hot countries as well.

    Looking to speak to you again

    I hope your wings keep fluttering in a myriad of rainbow colours
    Always in my thoughts
    Prayers

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  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Hi @thespiceman

    Just a quick hello in response to your post, and an opportunity for me to say how much I admire the battle you have fought with addiction. As in so many other instances, I have been extremely lucky there. The closest I've got to an addiction was smoking, and even now I vape, but it is nothing in comparison with alcohol.

    So very, very glad to count you as a friend.
    Affection,
    Richard
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good evening @thespiceman

    That is such a beautiful interpretation :) I will keep that in mind for when I feel low.

    My aim is to be open and frank about anything. Especially things that others may feel embarrassed to talk about. 

    My Occupational Therapist gave me a commode yesterday. Due to almost having an accident. When it was delivered and my mum placed it next to my chair I just stared at it (what I could see of it anyway). Frustration and anger hit me. Frustrated and angry because all the things I can do are very limited now.  Today my mum took me to a local day centre where people can use their bath and shower facilities. As I can no longer go upstairs this is my only option, apart from having a wash everyday. My mum has to help wash areas that I cannot reach. I just sat in the shower chair and cried. Like when my mum was washing my hair, putting shampoo and conditioner on, I so badly wanted to be able to do it myself. Then it all hit me like a ton of bricks, the things I could no longer do.  When we got home I sat back in my chair and checked my emails - majority were notifications from the online community. Which put a smile back on my face. You all are a part of my smile, my family, best friend and pets make up the rest of my smile :)

    I haven't been in the garden for a couple of months now, I did plant some seeds a few years ago, can't remember what flower it was called and ever since one or two bloom between spring and summer. When they come into bloom I will take a picture and show you :) 

    Speak soon :)

    Your Butterfly Friend
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Good morning How are you?  Thank you for sharing.  I admire your honesty and your positivity in trying to cope with sensitive and some times distressing things.

    I always appreciate the time we share.  I do feel for you and trying to cope.  Remember your are important and over time, gradually you will be able to give yourself opportunities to help yourself.  Adapting to new circumstances is the most distressing and upsetting part of being disabled.  

    It hurts me to see you getting upset annoyed, frustrated I have been there so many times.

    I have some days a lot of shouting, throwing things even have a stress ball.  It is a rubber ball that is really soft squeeze this to cope.  Mr Angry appears.

    New things are as I live on my own is the mishaps and accidents.  That occur these I had now try to get used to.

    I have days of annoyance and frustration like you.  Come on here have a rant and rave, I will listen. if I can will soothe and ease the pain.

    Please give yourself a chance give yourself treats little things that you like to do.

    Praise yourself, take any new task slowly.  This is how I cope.  Think about yes it is struggle every morning talk to me about how you are?  Speak and communicate to those who are supporting you.  Express how you are?  I have made too many mistakes not being honest about me.

    Please can I say I do not wish to tell you how you run your life.  I am not that just a friend who has care, concern for a friend.  You would be the same for myself if I had problems.

    I know I have discussed them with Richard and others.

    I hope you have a great day remember this not adios for now or revoir but am here any time.


    My butterfly friend

    Take care

    Always in my thoughts and prayers
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  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Good morning spiceman

    How are you ?
    sorry that we haven't spoken for a while. I do read all your posts but have very limited energy for replies at the moment but I am always here if I can help in any way
    I hope you have a good day

    CR
    Be all you can be, make  every day count. Namaste
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @RichardVR Good Morning How are you ?  What ever you do today have a good day.

    I wanted to explain my post about my addiction.  That is the other side of it.  The social erosion of friendships.  Sometimes we all think having a drink is that the pub and beyond.  Being at home having a drink where is the harm.

    I apologise for long posts some times.  A lot of this is loneliness and need to speak and discuss what is bothering me.  The need to express emotions feelings I have.

    One of the serious issues of the problems I have encountered.  In relationships between me and addiction and a relationship is disclosure.

    Had this many times.  Worse for me was the relationships I had with ladies.  When I have disclosed.  Instead of being compassion, understanding ,listening.  I get rejection , misery and bouts of depression.

    It is very painful because of our pub culture. Everything is social around the pub.

    Any way what has effected mentally is still me and the reactions I get.  No one realises you can be clean but have fears, anxieties of it all.

    I hope and pray for all my friends who are in the community like me, take care am here to talk, discuss.  I am not here to change you.  You have to do that.

    I hope today have a quiet one.  Got well I found them some 70's  Compilation CDs I had bought.  Must be one of those days bought on a whim.

    Any way forgotten how good the tracks I used to know still sound great.

    Had on Love Grows by Edison Lighthouse, All  By Myself By Eric Carmen,  With Out You By Nilsson.

    Remember The Dooley's they appeared on Opportunity Knocks in the 70's Came from North Shields or was South Shields.  Any way were a group of family members good toe tapping songs.

    Played Love of My Life.

    Then there were those terrible funky disco tracks.  How did I ever dance to that.

    All awful by one name wonders.  Liked Chic, George MacCrae, Hues Corporation, O'Jays.  Wonderful Gladys Knight, Kool and the Gang, Stylistics.  The Philly Sound of the 70's.

    Billy Paul, Three Degrees, The Trammps, Barry White plus others.  All based around Philadelphia USA.  Lot of small labels included 20th Century Music, co owned by Barry White.

    More soulful stuff to look out for.  More music history.

    What ever you are doing please take care

    Your friend 
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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good morning @thespiceman

    I am more positive today thank you :) How are you?

    I know sensitive subjects can be impossible to talk about, I just don't like the thought of people being upset or embarrassed because they feel like they can't talk to anyone about these issues. Even if people just need to let their frustration out, like I did yesterday. I felt better for opening up about it. I don't like to bottle up everything anymore because it used to cause me to be stressed for months, years even. 

    I appreciate all the advice you have given me since we met. I would never think that you were trying to run my life, you are just an amazing and supportive friend :)

    I am going to look into getting a computer which can be adapted for me and a keyboard that has larger buttons on. Looking forward to getting one :)

    I do praise myself when I manage to do something that I really struggle with, for instance  last night whilst having dinner, sausages and beans, I was really struggling to use the cutlery but I managed to eat it all without dropping any food, so I gave myself a little round of applause :)

    Hope the sun is shining where you are and I hope you have a good day :)

    Chat soon, my good friend 'The Mystery Man, The Spiceman'

    Your Butterfly Friend
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Good afternoon.  Thank you for being a friend, thank you for reply.

    Yes I agree with you discussing personal ,private things that all of say usually behind closed doors.  If you feel comfortable in talking how your do personal, private often intimate things.  Remember you also are helping others learn how to cope and they will understand themselves.  Why not, I used to talk how I coped one time in front of a group of youngsters.

    I used to look after children usually my friends.  While they were at work.  Had spare time had a job with flexiable hours which meant I could pick up children from school.  Take them to school.  Any thing really.

    One of teachers asked me we invite a person from the community to talk about them selves.  So off I went.

    Talked about myself and the disability, struggles all in front of tots.  Made the whole talk a bit of  comedy skit, amid laughter and questions.  From what is my name hang on I knew it this morning.  I know I have written on the back of my coat on a plaster.  Howls of about 20 plus little ones can hear it now.

    You see am daft really, just to break the ice.

    Came around to things like you said.  Told the truth and tried to explain.  I think I made more friends that day than I had ever done.

    Children are always curious about members of our community.

    Thank you for saying that I sometimes feel concern and care for people.  We can all of us try to be a friend.  Also try be fully aware of how the person is when you send messages.  I know I do.

    That sounds good to get a different computer.  Could be advantageous to have big buttons.  Look at all options.  I know some are voice activated as well.  So you can speak or touch screen.

    Could be idea to consult SCOPE when the time comes.  I am sure they have advisors who may point you in the right direction.

    It is something I may have to do .  Fingers stubby and hurts to some days.

    It is great is it not to praise yourself.  Excellent.  Had evening meal last night too, went to plan.  Usually out of a week 2 or 3 evening meals I have planned some day.  Accidents happen.  Spills and mishaps.  I get it in the bowl, always spill things.  Portion stuff is my big thing.  Make too much.

    Use tea towels to hold hot lids and spoons, some times I make mishaps blender, have to let it cool down.. Note all the ceilings where I lived have splatters of sauce or pasta sauce on them.. Results of that.

    Need a recipe sometimes fail to put enough seasoning in.  Even the best chef's have issues.

    As I say I hope what ever you do today.  Have a pleasant one.

    I am around as usual plus weekend.

    Just going to get warm again.  Cold like something going to happen.  Leaded skies.

    Got plenty of food if I am snowed in.

    I live on the crest of a hill but the car and roads get blocked with snow.  Last big snow it piled up high as to the wheels of the car.

    Could not dig my self out.  Got help.

    So I hope you keep safe my butterfly friend

    Take care The Mystery Man, The Spiceman

    Community Champion
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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good evening @thespiceman

    I used to be ashamed/embarrassed to talk about personal/intimate issues but overtime I kept saying to myself "Why should I feel embarrassed about things I can no longer do, it's not my fault nor anyone else's fault. We all need help at some point". Before I discovered the online community I yearned for someone to talk to about these issues. I know I have my family and friends to talk to but it's better to talk to someone in the same boat as you.

    It's amazing how children are quick to understanding. For instance, my niece, she's 9 in a couple of weeks. She always speaks very slowly and very clearly as she knows all the problems I have. She was patient when I taught her how to sign the alphabet and a few sentences like "How are you?" and "Thank you". When she noticed I was upset about having a commode she came over to me and gave me a big cuddle and said "Don't worry about it". I admire you for speaking in public about your disabilities, I think schools should do that more often, invite people with various disabilities to talk. I don't mean like teaching children about every single disability but to gain more of an understanding. 

    Today has gone quite quick, my partner had a day off today so he spent most of it with me, thankfully after a talk with my mum the other night he is doing a lot more to help. I have been reading ways to raise money in aid of Scope, I read about the sky diving challenge and showed my partner as he has always wanted to do one, he is keen to do the challenge, hopefully something to plan in the near future :)

    Hope you have had a good day :)

    Speak soon my good friend!

    Your Butterfly Friend
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Good evening just few words.  Thank you for reply.   Hope you had a great day. Truly amazing children are.

    I had a friend's little lad who I took care of.  Me and him formed a bond.  A lot of time spent.  Not easy for him. All female household and had three Aunties plus one of the ladies had two little girls.  Very hard for him to be on his own.

    As with a lot of families separated parents.  His father had a child with his new partner another girl.

    The little lad left out, lonely wanted to play footie as he said.  Not many friends at school.

    Tried to give him much of my time, energy and may I say support.

    We worked together to find solutions.  Got emotional if I had to go into hospital.
     So the questions would start.  So about me and my disability.  After that well he became my protector from people asking.

    I am glad you and your partner have talked, spent some time together that is good.

    I hope he understands a little more.  Small steps.

    I hope you have pleasant dreams

    Take care Butterfly friend

    The spiceman

    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Hello @thespiceman
    Very late getting back to you, I'm sorry. You and Ami are never very far from my thoughts these days.
    Your references to and description of alcoholism mean - quite apart from your courage in sharing - a very great deal to me. every so often something happens, there's some news report or release of statistics, and an issue takes centre stage. It may be alcoholism, it may be something else, but it is always the focus for just a while until the news report, statistics, whatever, start to talk about something else. Each time one thinks one has learned something, but each time one forgets at least some part of it.
    Those in opposition to it tell us, of course, that 'social drinking' is the problem, even social drinking as illustrated in soap operas, and one thinks "Oh! Yes!" but nobody seems to say "Well, what is the alternative? How else do you meet friends and colleagues to chat, to share, to get things of your chest?
    So policies to defeat the 'enemy' - alcohol, drug-abuse, smoking - are introduced, but nothing is offered that provides any real kind of alternative, and the consequence has to be that many, like you, are left isolated.
    I have always believed that we, as a society, have got things terribly wrong, yet the more I read of the posts in the community the more I realise just how terribly, horribly wrong things are.
    I hope you had your quiet day, my friend, and I hope you know that whilst I may not post every day I am here, listening, caring, about a gentleman who matters very very much to me.
    Affection, always,
    Richard
  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    My warmest best wishes and regards, @Ami2301, as always.
    You are so charming and so brave.
    Take care,
    Richard
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @RichardVR   Good Morning Thank you for reply  Thank you also for comments about alcoholism.

    I agree with what you say.  You from the outside who is looking in to a subject of a health issue that is in many circles is not discussed.

    I have been considering a while now to do a discussion on not only my story.  Also start to explain how it is effecting me mentally, physically.

    Despair some of the myths and rumours maybe of having a drink.  You need to understand it won't be warts and all as they say.  I have met many wonderful people with addiction histories on this forum.

    Who are constantly striving to end their addiction habit.  They have to try to stop and use many methods to do so.  All sanctioned by clinics, rehab or Doctors.

    I may I say this did stop two or three times well tried to but it is the cravings you wish to have.  First of all then there are the bodies reaction to not having a drink.  You basically go into shock.  Have heart problems or murmurs or worse death.

    That is why if you stop with out proper medical supervision.  You are in danger.  I once had all these symptoms and had been admitted to hospital.

    Take this morning most days have back pain, usually in the area of the kidneys.  Dull ache no matter how clean you are.  How you cope day to day is the issue.

    I thank you for supporting me as a friend.  I hope to try to do today to relax a bit.

    First time for a while spoken to my neighbour just a chat.  Her partner not well.  I feel for her because she has a partner who is a lad who I am afraid never has taken care of him self.

    I know it is not easy for anybody with obesity issues.  Listening to your body is the hardest thing ever.  I have been there with addiction.  Ballooning up to 15 stone plus.  Then ill with addiction dropping down to 7 stone and losing my motobility, muscle problems.  So now trying to keep weight to a minimum.

    Every morning I wake up to their house smell of a fry up.  Windows are closed there's are wide open.  I have tried to impart a little knowledge of healthy eating.  He's not listening.  He's got to do it himself.  I found out he is struggling with kidney problems.

    She is I can feel it coping but I have a Christian duty to listen as she does to me.  Any way I try not to think about it.  Because it reminds me of my own health issues.

    On the news feed pages Eddy Amoo lead singer of The Real Thing has died saw them in the eighties doing clubs.  Good British Soul group.  Came from Liverpool.  Started out three brothers as The Chants first black group of the Mersey beat area.  The formed The Real Thing in the 70's.  Had hits and a No1 You to Me Are Everything.  The three Amoo brothers were part of first British soul movement of the 70's.

    Talking of music Lead singer of The Crystals Barbara Alston has passed on.  Iconic group formed by Phil Spector.  Had a load of these groups under his spell The Ronnettes being one.

    I remember once Ronnie the lead singer of the Ronnetes who was married to Spector.  Talking about a controller of a man.  Even when she left him.  Could not sing any songs by him and the group she sang with.  Used courts to bar her singing.

    More music history from The Spiceman.

    What ever you do today I hope you have a pleasant day.

    Take care

    Your friend
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good morning @thespiceman

    How are you? Do you have anything planned for today?

    That was beautiful to read about the special bond you and the lad shared :)

    Bags are packed ready for hospital, I really do hope I get a diagnosis. I will be glad to come home when it's over so I can start to adapt my life and to hopefully raise more awareness about it, I don't like the thought of anyone experiencing similar symptoms and not knowing what to do or who to turn to. 

    @RichardVR thank you for your lovely words as always :) Hope you are well!

    Speak soon my wonderful good friends

    Your Butterfly Friend
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301 Good afternoon . Hope you having a pleasant day.  Cold and sunny here.

    Thanks for asking just weekend try and relax.  Programme on City of Florence I might watch.  Also just the normal day of trying to do household duties.  Started the day with a breakfast.  Lots of goodies there.  Not just toast make a healthy start to the day.

    With cereal, tomatoes grilled and poached eggs.  Fruit and yoghurt with Cinnamon topped.  Glass of Milk  A lot of little bites.  What do you start the day with ?

    Hope your butterfly wings are ready to go to hospital.  Imagine you are anxious on edge .  Any body would be.  Just think though you will be able to spread your butterfly wings and give others who are like you much support and positivity.

    I used to say that all the time.  Yes I am nervous on edge tenterhooks.  Yet I will meet people like myself.  Who will be become hopefully best friends.  Help and inspire others.

    I know having any treatment is so hard and you get worried.  The thoughts.  One time a story to share.  I had to have injections every four hours or so.  Then I asked them scared of this.  So the ward sister took to Cancer ward where the little kids are having similar treatment.

    I did not have Cancer it was a injection to cope with pain from surgery and to stop infections.  Seeing these little children having treatment.  Having injections.  Then I can do it.

    So that is what I do now if I have any treatment I disliked or have an issue with.  Think of those children.

    Please take care and what ever you do we all here to support you the community.

    I am here as well, hope to speak to you soon.

    The Spiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good evening @thespiceman

    Today has been just a normal day,, until my partner got home from work. Sadly, he found out that one of his best friends had died today. They had been best friends for years, always spoke fondly of him. Even though I always offer support and love at times like these, I've learnt whilst being with him to leave him be for a while. It's how he copes so I need to respect that. He always knows I'm here though.

    Also, in the news, the actress who played Alice in Vicar of Dibley sadly passed away, only 53, gone far too soon! She was so funny, God rest her soul.

    Like any other person would, I am dreading what treatment there is but I need it. If there is any treatment available, that is. 

    Hope you are OK and you had a smooth Saturday :)

    Speak soon

    Your Butterfly Friend
    Disability Gamechanger - 2019
  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Hi @Ami2301. Thinking about you. Goodnight and 'good'bless.
    Richard
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Hi @RichardVR

    Thank you my dear friend :) 

    Hope you have a good nights sleep!

    Ami
    xxx
    Disability Gamechanger - 2019
  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
  • matty67matty67 Member Posts: 8 Connected
    Ami2301 said:
    Hi everyone, my name is Ami and I've recently turned 23. 
    To cut a long story short, I am deaf, blind (central vision loss, reliant on peripheral vision, been diagnosed with optic neuropathy), have no balance so am wheelchair bound. I cannot walk unaided at all. These disabilities have happened since after Christmas 2016.

    I've suffered with depression, anxiety and panic attacks for 10 years. I was anorexic when I was 13/14, also suffered with vitamin b12 deficiency and raynauds since. 

    I cant even put into words how all of this has affected me, I feel selfish for constantly thinking "why me?" I have lost friends because of my recent disabilities which breaks my heart. I miss working so badly. I feel like a burden to those who support me, I have no idea how to cope with this especially as I'm not getting any better...

    i am petrified.

    Ami xx

    Hi Aimi im mathew i feel deeply sorry for you i have epilepsy which ive suffered all my life its distoryed my love and like you ive also had depression anxiaty and panic attacks but i lurnt to control them by emptying my mind of missary and pain and think posative thourghts instead lisson to soft music and do breathing excersize to can help but ive start taking garlic tablets solieds tablets 1000mg a day which can help you alot .you can get them on amazon and ebay cheap 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Hi @matty67

    I am sorry to read that you have suffered too. Thank you for the advice, I have been taking Sertraline for nearly 4 years now, I am a lot better than I was :) I too cut out people from my life who were causing me more harm than good. I started to do what made me happy, not what others wanted me to do. I was in control of my anxiety. Due to last year being the most stressful year of my life I kept going through phases where I would stop taking my tablets because I just didn't see the point in trying to improve my mood when my health was quickly deteriorating. I still have low days, everyone does, but fortunately I am having better days :)

    Ami :)
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Ami2301   Good Morning, cold bright sunny day.  Hope you are OK.  What ever you are doing relax much as possible.

    Please can I say sorry about your partners friend.  When some one dies it is so hard.  Know what to say or do.

    I am sure that being the person you are.  He knows that if you wish to have support and compassion.  He knows you are there.

    I see on the web pages about his lady Emma Chambers.  I am a mystery man as you sometimes call me.  Sorry I have never watched anything, she is in.

    To lose any body whether famous or not is a painful episode of our lives.

    I have lost friends to addiction.  I am the last one left of our group of guys.

    I pray for them all the time, always in my thoughts.

    I hope today what ever you do and have try to take your mind off things.

    Sunday for me nothing on TV.  Have Classic FM on.  All day helps with stress and strain of life.  Probably do little bits of house duties, plus some time to reflect.

    That helps just siting with my thoughts the week ahead.  I know I have the forum here so that helps.

    Hope keep safe my butterfly friend

    Will hopefully speak again

    Take care

    The Spiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good afternoon @thespiceman

    Very sunny and very cold here. Blue skies too!

    I am very nervous today, am trying my hardest to avoid any stress today. OK so far, keep trying to think of funny memories as it relieves my anxiety the quickest. 

    Thank you for your condolences, I shall pass them on to my partner. 

    I know once I get settled in then I will be OK. It's just the initial step of going somewhere where I've never been and to be having these tests done. Another thing I am worried about is communicating. I know there will be times when mum can't be with me so it's going to be difficult to try and understand what they will be saying or asking me to do.

    How are you? Have you had a relaxing Sunday? :)

    Speak soon my good friend!

    Your Butterfly Friend
    Disability Gamechanger - 2019
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello  @Ami2301 Good evening thank you for your reply.  Hope you can relax.  I know it is not easy.

    Good idea to think of funny memories.  When I am down I have loads of silly, daft jokes to recall in my head.  Just makes me smile.

    Know about little things about recalling good times and stuff like that.

    You could if it is possible just think yes I am going some where I have never been.  Then think who will I meet, am I going to make new friends.

    You know sometimes yes we get nervous on edge.  That big knot in our stomach, pain in our chest, urge to want to leave, and when we get there the signs of anxiety disappear.

    Because there will be some one that you will connect with.

    I wonder with communication there will be someone in the hospital to assist.  I know they will be.

    I am trying to you loads of positive things to think about.

    Everything will work out.

    You will be OK

    Hope you sleep tonight soundly.

    My butterfly friend

    Take care your friend
    Community Champion
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  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Good evening @thespiceman

    I had a couple of hours nap so am feeling a bit more relaxed now :) Hope you are OK!

    I must share my funniest memory with you so you can have a laugh too!

    (I'm laughing already before I type anything haha) My partner and I went to a burger van one morning, we were walking along the path and he was talking away to me that he wasn't looking ahead, next thing I know....SMACK....he had walked into a lamp post...I couldn't help but laugh, he wasn't best pleased though!

    Any joke amuses me, I can sit there and laugh for hours haha. Once I start laughing I can never stop, I have just thought of a saying - A laugh a day keeps the insanity at bay!

    Every time I have been to London I always try and think of famous people that I might meet, my mum has to be my eyes though as I can't see people's faces.  

    I best start to wind down...I will post when I can, thank god for WiFi haha!

    Thank you, as always, for your support and advice :)

    Forever grateful :)

    Hope to speak again soon!

    Your Butterfly Friend
    Disability Gamechanger - 2019
  • JennysDadJennysDad Member Posts: 2,308 Disability Gamechanger
    Hi @Ami2301 , and @thespiceman
    Spoiler alert - a joke from the new movie 'Finding your feet' which I saw yesterday, but which is one of the best I've heard in a long time.
    Woman 1 to woman 2: "How's your new relationship going?"
    Woman 2: "It broke down."
    Woman 1: "Why, what was the problem?
    Woman 2 "Religious differences".
    Woman 1: "Religious differences?"
    Woman 2: "Yes. He thought he was God. I didn't."
    Love to you both,
    Richard
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