Do You Accept Your Disability

I used to be able to do sport
Now I watch from the side lines very jealous that I can’t join in
I used to walk & run
I took this for granted, without a second thought for those who couldn’t
I used to work and lead people
I was a Manager in a leading multi-national company
I used to go out without taking necessary aids with me
I could go to the pub clubs or friends without a thought
I used to drive
I once had total freedom
II used to have a life
Now I have a very different life
I find it very difficult to accept my life, I feel cheated. I miss my old life, my so-called friends all dwindled off to other ventures, those I could not attend because of my disability. I need to use a wheelchair or mobility scooter when out. I have to be mindful about eating out. I can only stay local on my mobility scooter. I miss interacting with people. I miss the drive I once had when working. I miss my old life.
How do you feel?
Replies
Are you a member of any clubs or not? They are a good way to meet new people and have fun as well. Find out what is on offer in the area. Go see what happens.
Disability Gamechanger - 2019
I think it is perfectly natural to feel all of those things and angry too. I have only been a wheelchair user for 10 months and understand the complete life changing body blow you describe. There will always be stories about people overcoming this and that, they usually make me feel worse! I think we must accept that we need to grieve for our loss. My son is grieving too. I get on day to day and am re-learning how to 'be'. I am in a bewildered fuzz most of the time and not just due to the pain relief! I do accept that this is where I am now, but I don't accept that I will feel like this forever. Perhaps a forum like this helps?
some might argue that they know no different, but they do, they watched how we all took it for granted, well we did. and now its gone. so now we have another life, I have started going to a gym ICan Gym powered by motorised equipment, its a start, I have so much muscle wastage, and I am scared that if I don't do something I will lose even more mobility. I have started losing weight, yes i miss my old life, I am trying to accept my disability its coming slowly but surly.
I think that for my son it is different. He was born with spina bifida. It is all he has ever known so while he does become frustrated and angry it passes quickly.
I know some of you may wonder why i feel so angry towards my disability...I do and there were many years when I didnt...I accepted my lot and got on with it.
But I dont now...I really dont...there are so many things i miss out on..I am very fortunate to have a husband of 47 years..who does look after me well.
But he is changing too...living with a chronic disability 24/7 is chuffing hard.
When I first was told my son had spina bifida my first thought was “Why does God want my child to be paralysed permanently”? I was unsure how to look after a disabled child but did not want to abort either. I spent 2/3 months grieving at night post diagnosis.
Now almost three years later I still get upset but not as much as I did in the beginning. I did not want strangers to enter my flat and destroy my confidence and I still don’t. It ebbs and flows really. I did not want to sit in a hospital room with a doctor discussing my son’s private parts. If it helps, I found this article cathartic to read
https://www.helpguide.org/articles/healthy-living/living-well-with-a-disability.htm
all of my family have my disability, and previous generations went undiagnosed due to the lack of medical science regarding my disability. I was first identified as being dyslexic atr the same time our children were experiencing problem,s in the education system, a few years later I was the first adult in the UK to be diagnosed as having Auditory Processing Disorder (APD) which is the underlying cause of my dyslexia symptom. I have the Temporal type of APD, my brain has problems processing the gaps between sounds , which can include the gaps between words in rapid speech, I have a poor auditory memory, and word recall problems to to mention some of the issues. Until I was diagnosed I was not aware of all of the symptoms, and all of the limitations I have, I thought that others may be similar. I also discovered the alternative compensating skills and abilities I had develop from birth to work around my limitations
I am OK living with my disability, the problem is the lack of understanding and support from others, especially the UK medical support professionals who should work as part of a life long multi discipline support team.
I use word processors, Jarte especially, and online note options such as Evernote, Dropbox, where I can take my time to create something based on the research I have dome in recent years.
It can take me a few months to work my way through some research papers. and then having problems finding the right words to explain what I understand.
And example of this is my Evernote "what is dyslexia" web page. I am dyslexic and the Temporal type of Auditory Processing Disorder, my brain having problems processing the gaps between sounds, is the underlying cognitive cause of my dyslexia symptom. It took me over a year to develop this web page into something I could share with others to help explain my dyslexic symptom.
https://www.evernote.com/shard/s329/sh/3629a60c-be24-4bc2-ac77-b696f4e051d9/c556f4f6c4e53c4da44c2fae23e3db4a
I want to say that yes these aspects of your life has changed but it is finding new ways and means to be adaptable to deal with what you have.
Be strong, have courage do the things you wish to do and why not if you feel you can not then try another way or use something else to cope and try that.
As for what happens when you acquire a disability all the past histories, experiences and knowledge. That is your life story your history, your talents, skills and abilities.
Which you can still use and educate others who may be interested, want to know and offer advice, guidance and wisdom.
You do not have to prove a thing make people aware of how you are. If they have a problem or issues with you then they are not knowing who you are.
As a young man growing up into a adult had severe problems with members of society who make the wrong connection.
This misunderstood belief if your disabled your not intelligent. Where that has come from? Always running in to some one mismatched the disability and the persona.
In my time met a lot of community members who are paralysed from the neck, waist and many others having disabilities, condition and a vast spectrum of illness or disease.
Never for one do I ever judge them all I know see them as some one to follow and be inspired.
The most important thing in my opinion is not be angry I used to be and being angry gets you no one . As my Doctor says being an angry man does not help me mentally.
What does help me is to think positive use my talents, skills, abilities from work, volunteering and anything else business I ran very successful.
I had relationships and friendships . Of course we need to learn from those, the good the bad and the what if's.
If we saying what if all the time it becomes a difficult hurdle stone to get over.
Yes that relationship could be the one. Just chalk that up to experience learnt a lesson.
What is also important recognise that make it sing it out loud be proud of all your achievements.
Why not write them down in a book, I probably run out of space my own.
I use my addiction a painful, hurtful almost died during it a saviour a calling. Yes I was ill yes I was hurting, yes I am alive but I can pass on that to heal and recover to others who are like me.
I can be a grumpy old man as we do message a lot. lol. Why not but at the same time can bring my sunshine and my prayers, persona to the forum.
That helps as well my faith, my Christianity.
As I think about today or tomorrow what ever it will bring. I know will begin a new day using what I have to be supportive.
Of those members going through struggles every day.
Using my disabilty and much more to guide those with a need.
We will talk again soon.
Take care always in my thoughts and prayers.
Your friend.
@thespiceman
SCOPE Volunteer Award Engaging Communities 2019
Mental Health advice, guidance and information to all members
Nutrition, Diet, Wellbeing, Addiction.
Recipes
This is the problem no one likes to hear about any one having problems or issues.
It is finding an answer a solution.
I do think and it might be worth looking at ways to achieve and have some goals and some aims.
Just because you have a disability or an illness or a condition, this should not prevent you for having some thing to aim or have a goal.
No matter how small or insignificant. You may think they may be it is how and when you want to get from your life.
Look at making small steps some ways forward.
Make a list of things you would like to do. Does not have to be a big thing something simple.
I enjoy cooking my recipes my enjoyment.
If you want to meet people make friends, consider volunteering. Either contact your volunteer bureau your local council . Could be a volunteer needed if you have a condition, illness or disability for that society or association connected.
Could be helping others.
I used volunteer gardens now too much physically. So instead use this forum. Had to change and adapt.
I am a volunteer on here. I am a community champion use my knowledge and life skills on the forum.
If your experiencing lack of energy or having some problems with your health speak to your Doctor.
Is there anything I can be supportive with.?
I am always here anytime to listen and give if I can any suggestions.
Take care.
@thespiceman
SCOPE Volunteer Award Engaging Communities 2019
Mental Health advice, guidance and information to all members
Nutrition, Diet, Wellbeing, Addiction.
Recipes
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
SCOPE Volunteer Award Engaging Communities 2019
Mental Health advice, guidance and information to all members
Nutrition, Diet, Wellbeing, Addiction.
Recipes
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
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.
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.
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.
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.
Scope
Tell us what you think?
Complete our feedback form to help us to improve your community.
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.