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Do You Accept Your Disability

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  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
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    You`re a kind man...spiceman xx
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  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
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    Hello @pollyanna1052   Good morning how are you feeling today.?

    Thank you very much for kind words.

    I am just doing a role I enjoy helping, being supportive and a listening ear.

    Anytime you or any one wished to.  You know always here.

    Hope your Sundays going OK so far.

    Take care.

    @thespiceman
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  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
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    Hi again. I also like to think my words can help someone.

    With having seen 16 neurologists and none of them able to diagnose my condition correctly, I know how it feels to be mis diagnosed more than once!

    Happy Sunday to you too.xx
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  • csno01
    csno01 Community member Posts: 390 Pioneering
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    I have been visually impaired all my life but never understood the thundimentials of it until I was about 17 or 18. 

    I wrote to my Consultant asking the question and he responded, outlining what my conditions were and the impact which they had on me on a daily basis. (nystagmus and Optic Atrophy). I did a bit of research and unfortunately, fell into a very dark place very quickly. To be honest, it was the worst thing I ever did.  I did not start to come to terms with it all until my late 20s. Now In my mid 30s and having had professional help, I feel as if I am in  control of my symptoms, instead of them controlling me. Although I still have bad days. Who doesn’t. 

    CSno1
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  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
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    Another article on disability https://disabilityhorizons.com/2017/09/accepting-your-disability-and-living-your-life/
    But my son is not defined by his physical limitations. His disability makes up one part of his life story. It will not be mentioned constantly and certainly not without his permission. I want him to look past his weaknesses, and overcome and adapt. I want him to be positive too! Life is for living not moaning. 
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  • Connie00
    Connie00 Community member Posts: 252 Pioneering
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    Such mixed reviews, thank you everybody that took the time to read and respond, its very interesting to hear all the different views great responses all round.
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  • Connie00
    Connie00 Community member Posts: 252 Pioneering
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    @April2018mom

    Thank you very much I have read both those links, they were very interesting, I am sorry to hear about your Son, you will most likely have some trying times ahead, this I do understand as my Nephew has server Learning difficulties as I help to raise him, he now lives with me full time, so I know a lot of the challenges you may face.
    I suppose like everything you have to have a grieving period. but both the articles were very interesting.

    I'm not the kind to sit around and mopp about, I was just stating a fact, this is how I feel with my Illness they get worse not better. some days are better than others. I do look to the future although not a bright one at times. but i thank god for my family, and of course every year that I manage to survive. This was a talking point I just wanted to gauge just how many people felt the same.

    Asthma, RA, and Fibromyalgia I can cope with, its the FND which I have issues with. you never know from one day to the other just what is going to happen. I could be out and have an episode, I walk like I am drunk, slur my words. among other personal things that I don't want to put on here.  so yes going from a so called normal person to a complete wreak that has to be accompanied by another adult is difficult to come to terms with. but hey ho we are working on it.
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  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    edited September 2019
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    Connie00 said:
    @April2018mom

    Thank you very much I have read both those links, they were very interesting, I am sorry to hear about your Son, you will most likely have some trying times ahead, this I do understand as my Nephew has server Learning difficulties as I help to raise him, he now lives with me full time, so I know a lot of the challenges you may face.
    I suppose like everything you have to have a grieving period. but both the articles were very interesting.

    I'm not the kind to sit around and mopp about, I was just stating a fact, this is how I feel with my Illness they get worse not better. some days are better than others. I do look to the future although not a bright one at times. but i thank god for my family, and of course every year that I manage to survive. This was a talking point I just wanted to gauge just how many people felt the same.

    Asthma, RA, and Fibromyalgia I can cope with, its the FND which I have issues with. you never know from one day to the other just what is going to happen. I could be out and have an episode, I walk like I am drunk, slur my words. among other personal things that I don't want to put on here.  so yes going from a so called normal person to a complete wreak that has to be accompanied by another adult is difficult to come to terms with. but hey ho we are working on it.
    My son does not have any learning difficulties. His gross motor skills are delayed but that is because he was born with a birth defect that affects his walking ability. I work for a airline (Delta!) as a special assistance agent and quite often I help lots of passengers with disabilities. And yes I agree wholeheartedly as well. I think about his future at night too. But I do not worry as I know Logan can look after himself. He does not mope, why should I? I love being out of the flat.
    Today I worked at my other job. I love what I do for a living. We have set him goals at therapy sessions. Apologies if I gave you that impression. 
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  • LaughingLolly
    LaughingLolly Community member Posts: 100 Pioneering
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    I always thought I would end up disabled from a very small child because I had strange symptoms no-one could explain. I did a LOT with my life 'before' becoming disabled (if there actually was a before) and oddly enough I did a LOT with my life while quite severely disabled. Eventually new layers of difficulty have been added to my conditions and I now feel less motivated. I'm glad I never wasted my life at any stage of ability/disability but I also hope I can get a third wind  
    A laugh a day keeps the psychiatrist at bay. 
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  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
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    LaughingLolly said:
    I always thought I would end up disabled from a very small child because I had strange symptoms no-one could explain. I did a LOT with my life 'before' becoming disabled (if there actually was a before) and oddly enough I did a LOT with my life while quite severely disabled. Eventually new layers of difficulty have been added to my conditions and I now feel less motivated. I'm glad I never wasted my life at any stage of ability/disability but I also hope I can get a third wind  
    I hope you do to hun xx
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
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    Thank you to everyone who has shared their experiences! I agree with @Connie00, it has been really interesting to read everyone's stories!
    Scope

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  • Angeleyes65
    Angeleyes65 Community member Posts: 18 Connected
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    I too can't accept what's happened to me. It's a very long battle and I reckon it will be lifelong. Ibusr to be the pay energetic/helpful person anyone would ever know! It's gone & with it my life! I understand how hard it is for all of you as I can't get my head round this sori find myself in! ??
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  • dolfrog
    dolfrog Community member Posts: 441 Pioneering
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    pollyanna1052 said:
    Hi again. I also like to think my words can help someone.

    With having seen 16 neurologists and none of them able to diagnose my condition correctly, I know how it feels to be mis diagnosed more than once!

    Happy Sunday to you too.xx
    Hi @pol@pollyanna1052

    I know exactly what you mean. I went through years of being miss diagnosed by various types of medical professionals from early childhood until my late 40s. 
    Back in the 1950 - 1970s there was little or no understanding of what was first recognised as dyslexia, and speech and language issues. I had numerous breakdowns due my communication disability not being understood and accommodated by others, including my peers, teachers, and even the so called medical professionals of the day. .
    International research regarding neurology has moved on by  leaps and bounds since then and there are many new areas of research and medical issues based on the increased understanding international research has so far provided. There is still a long way to go, especially regarding the technology required to understand how the human brain develops and processes the various types of sensory input / information.
    The attempted miss diagnosis continues as the so called UK medical professionals fail to keep up with international research as it may require them to be retrained a nd work as part of a multi -discipline ream rather than marketing their limited understanding and services. .
    Fortunately I was clinically diagnosed with my real disability in 2003 in my late 40s, when  the NHS was running their first Auditory Processing Disorder research program at Sheffield University, the assessment took over 4 hours and because i had to travel over 200 miles to get home, some of the test were not done, however the most important tests were carried out which explain ed my life long communication disability, and the some of the many symptoms such as dyslexia.

    Unfortunately UK audiologists are reluctant to explain the 4 tyeps of my disability as it would require them to question some of the practices of other medical professionals speech and language, psychologists, and even psychiatrists. This is all about the politics and marketing needs of these various medical professions rather than understanding and explaining the real issues. 

    So if the medical professions do not want to explain and understand the nature of our differences, which is part of the neurodiversity of all humans, we are all different, and some are more different than others. there is no one size fits. There are multiple stigmas related to trying to explain most disabilities added to which the is the marketing of bogus cures and therapies which hasve little or no benefit for those who have be born with or acquire later in life one or more disabilities.


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