struggling to accept disability

Blakespops

Hi I am an Autistic disabled man of 46 years old who has spine/hip/leg joint issues that mean I am unable to walk and live in pain 24/7/365. morphine and other pills do not help apart from making me sleepy. Being wheelchair for life or bedbound for six months a year the ups and downs of my condition are so huge even after three years I am unable to get my mind to accept the limitations of my body.

As an example earlier today my wife took our son out for a couple of hours and about 10 minutes after she left I dropped the remote and as I reached for it down my spine I felt the familiar popping and then the pain came stronger than it is all the time and I was unable to move stuck on the couch. before wife came I ended up wetting myself as I could not get up and I was unable to get pain meds or a drink. sitting there so useless and unable to do the simplest of things for myself made e again see how useless I am since injured and how I am just an anchor around my wife and son's necks. when wife got home she came with one of her friends who knows of my condition but to have her here help my wife strip me and clean me and the couch up and place the pad under me where I sit naked to make it easier for toileting needs but humiliating and stripped of dignity.

I used to be able to do all decorating DIY and was a master carpenter and ran my own business now I am lucky if I can make a coffee these days. I at my best am able to do some light homework. even sex with my wife is impossible for the past 2 and a half years due to the pain it causes, not only does it kill the mood for me but she says the look of pain in my face makes her feel she is hurting me. I just am made to feel less of a man, husband and father all because of my condition.

How have others got the balance between acceptance of condition and imitations with the knowledge that you are/were able to do so much more and not rely on people run our own business with staff WE had to take care of. I just hate myself and feel such a waste of oxygen when I am like this. I have not one friend as I have either been snubbed by many old friends or some (our old neighbour whose daughter we hired) even tell my wife they do not know how she can stick by a needy cripple and she would get a divorce before she helped with toileting needs.

Any advice would be much appreciated but please if you do not have something constructive to say please say nothing, I am not here to be abused by anyone but God bless all who took the time to read this. Thank you for your time

Torry_Quine

That sounds awful and really don't have much to offer you. Has your GP ever referred you to a pain clinic as that may be able to help with alternative ways to help the pain?

Didn't your friend at least leave the room while your wife changed you?

I can understand that you certainly learn who your friends are when something happens like this.

I will be praying for you to get some relief.

Blakespops

Torry_Quine wrote: »

That sounds awful and really don't have much to offer you. Has your GP ever referred you to a pain clinic as that may be able to help with alternative ways to help the pain? Have already and doctor had offered an op but only 10% chance of it working and bigger chance I could be paralysed as for the pain I have all they can do to help and just "learn to accept I" was the pain clinics final word.

Didn't your friend at least leave the room while your wife changed you? due to me being in so much pain wife ended up asking friend to actually help strip and clean me. I knew I had to accept the help just to make it easier for my wife if nothing else.

I can understand that you certainly learn who your friends are when something happens like this.

I will be praying for you to get some relief.

Thank you for the prayers, I sometimes feel my family would be better if I was with God than being here with them as they would be free of me and my illness holding them back.

Torry_Quine

Blakespops wrote: »

Thank you for the prayers, I sometimes feel my family would be better if I was with God than being here with them as they would be free of me and my illness holding them back.

As bad as it is your family would not be better of without you, please don't think that.

Do you have any contact with your church?

Blakespops

Torry_Quine wrote: »

As bad as it is your family would not be better of without you, please don't think that.

Do you have any contact with your church?

Sure have talked with our church but even then I feel like I am just bothering them and Our pastor knows my doctor as he also goes to our church and I said it was ok if the doctor told pastor about my situation. the doctor said the pain must be like having to need a root canal filing in every tooth at the same time without any aesthetic and having it one daily. I quite agree with him on that.

The NHS has told me I will be just as I am for the rest of my life although the hip and spine issues are progressive so they will only ever get worse. pain wise I am on the maximum the doctor dare give and just have to live with it is all I am told. the doctor knows when I have a flare up we no longer call him out or report it as he has said there is nothing more he can do for me so even the NHS has given up on me.

I guess being honest as I have not one single friend seeing as we had to move into a house that has adaptations and have not ben able to get socially close to anyone as spend so much time bedridden or stuck on the couch as now unable to move to go to bed so couch will be my bed until things calm down again. Having not a soul to talk to, hang out with except my wife, the odd friend of hers to come visit, her volunteers boss who visits o drop off the paperwork for that week or our pastor comes sometimes but it is not the same, not like having someone I can chat to and also how to cope with mind saying "I can do that" and body saying "like hell can you" I hate feeling like a waste of space and weight dragging my wife and son down.

Dimey

Hello Blakespops

I have no experience with your level of disability but I do have enormous sympathy for you.

I guess you have to make a complete change in your way of thinking given that the NHS have said you will be this way for the rest of your life. There's no point thinking how you used to. You've got to start afresh.

Maybe that means living your life through your wife and son. Appreciate their successes and get involved in their interests by researching online and joining in their conversations. Explain to them you are not being nosy or intrusive but you want to support them and have an interest to occupy your mind.

It seems really important that you tell your family often how much you love them and appreciate all they do for you. They will need to see you being cheerful as their happiness will revolve around your moods. Your wife will need to see you appreciate what she does for you and not that you are resentful. It must be nearly as difficult for her to adjust as it is for you.

Your wife and son must love you very much. Don't even think about them being better off if you were with God. They have obviously been devastated already and you are alive to be with them. They need you to be a strong loving, cherishing personality in their lives.

I wonder whether there's any kind of autistic or disabled clubs near you where you could go just for a change of scene to break up the day. These kinds of clubs often lay on disabled transport and are usually run by social services or charities. Worth you researching. Don't dismiss them just because you may not be interested in the subject matter. The variety will help your state of mind and the contacts may lead to other things. You won't feel out of place if you start with disabled clubs as you'll meet other like minded people. Once you are confident you could join other clubs. Just a matter of working out the logistics.

If you can't leave the house for pain reasons then maybe you could see if volunteers would visit you for a chat. You can also get those caring pets where a dog or cat will be brought for you to stroke and get comfort from (if you don't have pets of your own).

You might be able to find friends to visit you for a chat from amongst your neighbours, retired peoples clubs, round table, rotary, the church, and special interest clubs like archaeology, history society, woodworking etc etc. The vicar could arrange it or the volunteers at the local hospital. You could ask your son's teacher or a neighbour.

As for your pain. Well clearly its hideous. But its going to be there whether you are miserable or cheerful so you might as well pick the cheerful route as often as you can bear. It will make life more pleasant all round.

It might be corny but look at Stephen Hawking. He's made a fulfilling career and had a family life while confined to a wheelchair having to communicate by thought process. He's made the best he could of his life as its been served up to him.

Look my ideas may be useless but if you start thinking with the mind of your new life rather than the mind of your old life then maybe you'll come up with some brilliant ideas to build yourself a contented and fulfilling future. Maybe make that your purpose in life.

All the best.
Dimey

SandraScarlett

What a great response from Dimey. I don't know what to say, and can't think of anything helpful, but couldn't read and run. I too agree that your family love you so much, and they would far rather have you there, than not.

But you are a young man, and this must be devastating for you. I do hope and pray that you'll get the support you badly need, and you're in my thoughts and prayers.

I wish you and your family well.

xx

Blakespops

Dimey wrote: »

Hello Blakespops

I have no experience with your level of disability but I do have enormous sympathy for you.

I guess you have to make a complete change in your way of thinking given that the NHS have said you will be this way for the rest of your life. There's no point thinking how you used to. You've got to start afresh.

Maybe that means living your life through your wife and son. Appreciate their successes and get involved in their interests by researching online and joining in their conversations. Explain to them you are not being nosy or intrusive but you want to support them and have an interest to occupy your mind.

It seems really important that you tell your family often how much you love them and appreciate all they do for you. They will need to see you being cheerful as their happiness will revolve around your moods. Your wife will need to see you appreciate what she does for you and not that you are resentful. It must be nearly as difficult for her to adjust as it is for you.

Your wife and son must love you very much. Don't even think about them being better off if you were with God. They have obviously been devastated already and you are alive to be with them. They need you to be a strong loving, cherishing personality in their lives.

I wonder whether there's any kind of autistic or disabled clubs near you where you could go just for a change of scene to break up the day. These kinds of clubs often lay on disabled transport and are usually run by social services or charities. Worth you researching. Don't dismiss them just because you may not be interested in the subject matter. The variety will help your state of mind and the contacts may lead to other things. You won't feel out of place if you start with disabled clubs as you'll meet other like minded people. Once you are confident you could join other clubs. Just a matter of working out the logistics.

If you can't leave the house for pain reasons then maybe you could see if volunteers would visit you for a chat. You can also get those caring pets where a dog or cat will be brought for you to stroke and get comfort from (if you don't have pets of your own).

You might be able to find friends to visit you for a chat from amongst your neighbours, retired peoples clubs, round table, rotary, the church, and special interest clubs like archaeology, history society, woodworking etc etc. The vicar could arrange it or the volunteers at the local hospital. You could ask your son's teacher or a neighbour.

As for your pain. Well clearly its hideous. But its going to be there whether you are miserable or cheerful so you might as well pick the cheerful route as often as you can bear. It will make life more pleasant all round.

It might be corny but look at Stephen Hawking. He's made a fulfilling career and had a family life while confined to a wheelchair having to communicate by thought process. He's made the best he could of his life as its been served up to him.

Look my ideas may be useless but if you start thinking with the mind of your new life rather than the mind of your old life then maybe you'll come up with some brilliant ideas to build yourself a contented and fulfilling future. Maybe make that your purpose in life.

All the best.
Dimey

Dimey you speak a lot of sense and I thank you so much. My wife knows I feel she deserves a knighthood for all she does not just for me and our son but she does voluntary work at two places too.

As I say I know my stumbling block is accepting the new me although as has been pointed out to me my autistic side and Asperger's find it so hard to accept change making it twice as hard to accept.

As for having people over it would be wonderful but they would have to accept me how I am and I have not had a good time of outsiders accepting me who are not paid to or like pastor it is just a job. I may look in to disability clubs local or maybe support group maybe they could send someone here to make it easier and wife as a carer could also chat about her own struggles.

Again Thank you and I will keep checking this thread through the night given I doubt I will sleep sat here on couch may God Bless you

Dimey

I reckon people would have more trouble understanding your autistic side /aspergers than your pain & disablement. You must have had to cope with that all your life.

Although change is hard for you, the new you will have to accept that some people won't know how to react to you. You'll just have to leave them to withdraw and make the most of the people who make the effort to get close to you.

I would have thought anyone agreeing to come see you at home would have been briefed on your situation and be prepared to accept whatever they find. If they don't like you they don't have to come back. If you don't like them you don't have to invite them back. You'll probably go through some funny or awkward situations till you settle down with a circle of friends who look forward to seeing each other.

The beauty of staying up late when you don't work is that you can make up sleep during the day :-)

Did your hospital offer for you to speak with people who live with similar disability? I'm wondering whether that might be worth considering, to find out how other people cope. If there aren't any contacts locally then maybe a hospital like Stoke Mandeville might have a self-help group you could contact by phone or online.

Dimey

I've had a browse and found these websites you might like to look at: -


Sport:-
http://parasport.org.uk/?gclid=CM_SuLGes7oCFceWtAodQiAAHQ

Holidays: -
http://www.disabledholidaydirectory.co.uk/search/uk-l23/self-catering-at110/

News: -
http://disabilitynewsservice.com/

http://businessdisabilityforum.org.uk/

Humour: -
http://www.mrbuzzard.com/Disability Humour.html
http://disabilityarts.creativecase.org.uk/creativecase-disability-humour

p999j

My heart goes out to you. Although I am not religious, it is good that you find comfort in your religion.

I find the smallest things give me comfort. I have also had to adjust to a withdrawal from society due to my limitations, although nothing similar to yours, I suffer from incontinence also, so know how you feel stripped of your dignity with that. And although hospitals and doctors help, they also are invasive, physically and mentally. It can all be very exhausting.

My means of comfort are my dog (a faithful old beast who seems to know when I am sad and is always up for a cuddle), music, I have a 'led meditation' app on my phone when I need to chill out, and a several sleep apps (background noise aimed to help you sleep but as I suffer from insomnia, I often just have it to make the 'awakeness' less frustrating, my garden- wildflowers and bees, my bird feeder (with niger seeds for goldfinches-beautiful little birds).

I am aware this all sounds so simplistic and dealing with pain makes everything harder, but I also went from a senior management position, with many letters after my name, to being housebound the majority of the time. People I thought were friends find that because of my restricted lifestyle they don't know what to say to me (what were you doing today? Lying on the sofa with intermittent visits to the toilet-so exciting!) so many avoid me. I do have good friends, but the ones who understand best are ones who have similar challenges, so I really think it'd be good for you to join some sort of disabled group.

Mentally, I think you have much to offer, and studying, in your less painful times might help. Please do not feel worthless, because you are worth something. Every person is. The very fact you have a wife means you are loved. Many people go through their whole life without ever finding love. In this I envy you.

It's also OK to feel weak and worn out, to cry and to feel crap. It's not a situation anyone would want to find themselves in. But slowly, try to find very little things which bring you some happiness. Dwell on those. If you haven't the strength to do anything, even just writing down things you could do in the future might help.

Sending you a virtual hugs. ((((hugs)))))