Struggling to remain positive — Scope | Disability forum
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Struggling to remain positive

Ami2301
Ami2301 Member, Community Co-Production Group Posts: 7,945 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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Comments

  • janejr
    janejr Member Posts: 144 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
  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 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
  • janejr
    janejr Member Posts: 144 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
  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 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
  • JennysDad
    JennysDad Member Posts: 2,299 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
  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 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
  • JennysDad
    JennysDad Member Posts: 2,299 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
  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 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
  • JennysDad
    JennysDad Member Posts: 2,299 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

  • janejr
    janejr Member Posts: 144 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
  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 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
  • JennysDad
    JennysDad Member Posts: 2,299 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
  • thespiceman
    thespiceman Member Posts: 6,389 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
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  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 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
  • thespiceman
    thespiceman Member Posts: 6,389 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
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  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 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
  • thespiceman
    thespiceman Member Posts: 6,389 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
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  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 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
  • thespiceman
    thespiceman Member Posts: 6,389 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
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  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 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

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