Do You Accept Your Disability

Connie00

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?

April2018mom

I tell myself never give up. Despite struggling with weak numeracy skills (dyscalculia) I am pursuing further education. This morning I was at the gym working out by myself before work. Can I suggest something useful? Try keeping a diary. It might help.
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. 

Ami2301

I said to someone the other day that I genuinely feel I was meant to be disabled and I accept that. That's my opinion. I could not do anything with my life with what I cannot no longer do. But what I can do, I can go down a new path and focus make use of what I can do.

deb74

I have always had limited abilities due to having hydrocephalus which affects my co-ordination and balance. I also have other disabilities and conditions and was bullied as a kid because of this but This is just the way I am so I have no choice to accept it. My health has got worse as I have got older but that is just how I am and I get on with life as best I can!

TraceyFalcon

Hi Connie
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?

pollyanna1052

In a word ...No...I hate my disability with a vengeance! As I get older it gets worse....I`mm 66 and became disabled at 45....hate it hate it hate!

david235

I have a very different life now than before I fell ill. I'm 44 and became disabled at 18 - at the time I was a second year chemistry student at a top university. It seems that chemical exposure set off the illness that led to my disabilities though, in retrospect, my health had been gradually falling apart from puberty onwards.

So much that I held dear was lost. I was a white, male, middle-class educational high-flyer who suddenly became a member of a minority group, who lost his strength, his independence and quite a lot of what he held dear, including his music (I sang in three choirs when I fell ill).

I am now so many years down the line that it no longer makes sense to try to imagine how my life would have turned out. What I know for sure is that even if I had kept my health, there would have been no guarantee that life's challenges would not have found me in other ways. Life can change in an instant. My contemporaries have had to face divorces, premature death of one or both parents, stillborn children, recurrent miscarriages and so much more.

WhatI do have is amazing relationships with those who are still around me, especially people from the disability community. Being able to offer understanding and encouragement to others in a similar position is very precious. Out of that came something I did not expect - a long term friendship with a woman with similar health conditions to mine surprised us both by becoming a long-term relationship. We had not seen it coming and were not looking for a relationship; it was only when we looked back on how we'd handled some challenging events together that we realised we were no longer just friends.

We're nearly twelve years as a couple now - and finally in a place where marriage and a life together is a possibility at last. We have been through a lot, including going up to two years between seeing each other, also her near death a few years ago (I had to say what I thought was a final goodbye to her three times over the phone and was unable to get to her when she was critically ill in intensive care, as I was too ill even to be driven to her and she knew that). There are losses, of course, in being as we are - there are times when the last thing you want is to be apart from the person you love. However, we recognise there are also tremendous blessings, not least in our tremendous understanding of what the other is going through and our total acceptance of them as they are.

I know my partner (and would be wife) and I are the fortunate ones, as so many relationships founder when faced with health problems and so many disabled people who long for love cannot find it.

It is vital to let yourself grieve, to regret and be angry, for the losses are often deep and profound. Often what you would think is the small stuff hurts way more than the bigger things - losing my music hurt way more than losing my mobility (I am looking for ways to get some of the music back). However, I hope there might be blessings too, not least in a deeper understanding of others and perhaps also in the quality of relationships.

Ails

I can relate so much to what @Connie00 says in her post.  Being disabled since birth, I don't really know anything else and I feel that if I was able-bodied I would have a different personality and be loud and an extrovert rather than be a quieter person, although I have gained more in confidence over the last few years.  In recent years my condition has deteriorated and I'm unable to do as much as I could do, resulting in me having to rely on my husband/family and friends more and at times I hate that as years ago I could work, drive and walk around not too badly with my crutches.  Now I spend more time in my wheelchair outdoors and get tired quite easily, but when I get down and upset I always try to concentrate on what I can still do and the fact that I can still go places at times.  I also count my blessings for having some great people in my life including some new friends I have met on the Community.  Days can be hard and at times I do feel sorry for myself, but it is ok to feel like that.  I guess I just try to channel those emotions in the right way and keep going as best I can.  

Connie00

Wow Thank you everyone for you gracious responses. it sucks, but you know what it is what it is. I have to we have to own it and control it. sure we will hanker over our old lives. but there is always a reason I think as to why. (still searching LOL) I am sure we are more compassionate now, we understand Pain heartache, maybe step back and look at what we have got, focus on the positives, not the negatives. but don't forget how it felt before we had it, some people didn't get that privilege.

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.

April2018mom

I was not born disabled. When I was 5, I fell off a balcony and nearly died. It was the height of winter so instead of falling onto the road, I fell onto soft snow. My mom came running. I spent 1 week in the ICU at Children’s and when I woke up 6 or 7 hours post accident, I realised I had broken bones as well. I was in agony for hours. For many years afterwards I had self doubt whenever I walked. I was scared to venture onto the balcony alone for the longest time until one day five years later when I was almost ten.
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. 

pollyanna1052

It has been so interesting reading the variety of responses as to how we feel about ourselves.
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.

pollyanna1052

david235 said:

I have a very different life now than before I fell ill. I'm 44 and became disabled at 18 - at the time I was a second year chemistry student at a top university. It seems that chemical exposure set off the illness that led to my disabilities though, in retrospect, my health had been gradually falling apart from puberty onwards.

So much that I held dear was lost. I was a white, male, middle-class educational high-flyer who suddenly became a member of a minority group, who lost his strength, his independence and quite a lot of what he held dear, including his music (I sang in three choirs when I fell ill).

I am now so many years down the line that it no longer makes sense to try to imagine how my life would have turned out. What I know for sure is that even if I had kept my health, there would have been no guarantee that life's challenges would not have found me in other ways. Life can change in an instant. My contemporaries have had to face divorces, premature death of one or both parents, stillborn children, recurrent miscarriages and so much more.

WhatI do have is amazing relationships with those who are still around me, especially people from the disability community. Being able to offer understanding and encouragement to others in a similar position is very precious. Out of that came something I did not expect - a long term friendship with a woman with similar health conditions to mine surprised us both by becoming a long-term relationship. We had not seen it coming and were not looking for a relationship; it was only when we looked back on how we'd handled some challenging events together that we realised we were no longer just friends.

We're nearly twelve years as a couple now - and finally in a place where marriage and a life together is a possibility at last. We have been through a lot, including going up to two years between seeing each other, also her near death a few years ago (I had to say what I thought was a final goodbye to her three times over the phone and was unable to get to her when she was critically ill in intensive care, as I was too ill even to be driven to her and she knew that). There are losses, of course, in being as we are - there are times when the last thing you want is to be apart from the person you love. However, we recognise there are also tremendous blessings, not least in our tremendous understanding of what the other is going through and our total acceptance of them as they are.

I know my partner (and would be wife) and I are the fortunate ones, as so many relationships founder when faced with health problems and so many disabled people who long for love cannot find it.

It is vital to let yourself grieve, to regret and be angry, for the losses are often deep and profound. Often what you would think is the small stuff hurts way more than the bigger things - losing my music hurt way more than losing my mobility (I am looking for ways to get some of the music back). However, I hope there might be blessings too, not least in a deeper understanding of others and perhaps also in the quality of relationships.

I love your story and wish you and your partner all the very best xxx

April2018mom

This is a interesting topic of discussion.
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

dolfrog

I as born with a complex and not well understood communication disability, I only really discovered how different I am from others during my 40s, 
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. 

pollyanna1052

dolfrog said:

I as born with a complex and not well understood communication disability, I only really discovered how different I am from others during my 40s, 
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. 

Well you have a very good command of English grammar and how to write a great post. x

dolfrog

pollyanna1052 said:

Well you have a very good command of English grammar and how to write a great post. x

I attended a private school back in the 1970s, and i had to take the O Level English Language Exam, 6 times over 2 years before i eventually passed with the lowest grade. I takes me quite a while to create posts on internet forums, checking my underlined spelling mistakes and finding the right words. However the internet is my main means of communication out side of my immediate family (my wife and 3 sons), as I am almost house bound due the failure of others to understand my communication disability and experiencing years of disability discrimination.

dolfrog

@pollyanna1052
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  

thespiceman

Hello @Connie00   My friend thank you for your post. I want to add as some one who was born disabled and acquired other disabilities, illness as I have matured.

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

DebbieN

I feel exactly the same I used to on the go constantly now I'm lucky if I even feel I should go out.Im so sad about this it takes me mindfulness to get through the day I feel cut off from everyone including family I just don't have the energy anymore x

pollyanna1052

Connie00 said:

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.

 

Hi Connie, I`m with you all the way! hate this body of mine and what I have become.xxx

thespiceman

Hello @DebbieN   Sorry to hear this.  How would you like to change things and deal and cope with what you have.?

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

pollyanna1052

You`re a kind man...spiceman xx

thespiceman

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

pollyanna1052

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

csno01

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

April2018mom

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. 

Connie00

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.

Connie00

@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.

April2018mom

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. 

LaughingLolly

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  

pollyanna1052

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

Chloe_Scope

Thank you to everyone who has shared their experiences! I agree with @Connie00, it has been really interesting to read everyone's stories!

Angeleyes65

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! 😟😞

dolfrog

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 @[email protected]

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.