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Struggling to remain positive

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  • Ami2301
    Ami2301 Community member Posts: 7,942 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
  • thespiceman
    thespiceman Community member Posts: 6,388 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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  • Ami2301
    Ami2301 Community member Posts: 7,942 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
  • thespiceman
    thespiceman Community member Posts: 6,388 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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  • JennysDad
    JennysDad Community member Posts: 2,299 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
  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
    My warmest best wishes and regards, @Ami2301, as always.
    You are so charming and so brave.
    Take care,
    Richard
  • thespiceman
    thespiceman Community member Posts: 6,388 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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  • Ami2301
    Ami2301 Community member Posts: 7,942 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
  • thespiceman
    thespiceman Community member Posts: 6,388 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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    Nutrition, Diet, Wellbeing, Addiction.
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  • Ami2301
    Ami2301 Community member Posts: 7,942 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
  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
    Hi @Ami2301. Thinking about you. Goodnight and 'good'bless.
    Richard
  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
    Hi @RichardVR

    Thank you my dear friend :) 

    Hope you have a good nights sleep!

    Ami
    xxx
    Disability Gamechanger - 2019
  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
  • matty67
    matty67 Community 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 
  • Ami2301
    Ami2301 Community member Posts: 7,942 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
  • thespiceman
    thespiceman Community member Posts: 6,388 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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  • Ami2301
    Ami2301 Community member Posts: 7,942 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
  • thespiceman
    thespiceman Community member Posts: 6,388 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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  • Ami2301
    Ami2301 Community member Posts: 7,942 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
  • JennysDad
    JennysDad Community member Posts: 2,299 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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