struggling to accept disability

pmlindyloo

Some lovely posts here.

Since you are able to use the computer I am wondering if you have had a good 'google' of aids to help make your life a little easier?

My mum is bedbound much of the time and the loss of dignity is hard to bear so I have tried very hard to make her life easier by buying lots of different aids.

There is a good website called Complete care so might be worth a look there.

Also, I would agree about trying to find some help through various charities. The Red Cross offer a volunteer service in some areas - another name to google to find out more.

And of course this website can be a great source for finding 'virtual friends'.

Acceptance of what life sends us is so hard to cope with especially when you are in so much pain but do not for one moment think that you are a burden. If it was your wife or son who was in your position what would you do for them?

Blakespops

pmlindyloo wrote: »

Some lovely posts here.

Since you are able to use the computer I am wondering if you have had a good 'google' of aids to help make your life a little easier?

My mum is bedbound much of the time and the loss of dignity is hard to bear so I have tried very hard to make her life easier by buying lots of different aids.

There is a good website called Complete care so might be worth a look there.

Also, I would agree about trying to find some help through various charities. The Red Cross offer a volunteer service in some areas - another name to google to find out more.

And of course this website can be a great source for finding 'virtual friends'.

Acceptance of what life sends us is so hard to cope with especially when you are in so much pain but do not for one moment think that you are a burden. If it was your wife or son who was in your position what would you do for them?

I am sorry to learn about your mom having the difficulties and like her I do have all aids needed from one to help put my socks on to one to help me get out of bed or at least sit up in bed.

My wife is wishing to go on a two day ferry to Belgium that we normally do annually as a tobacco run buying a years supply. This time she wants to go alone so she only has to care for herself and not me or our son and she deserves this time away but that would need me to be at my best or cover just in case so we are even stuck not knowing what to do here. I tell her each day how much I love her and appreciate all she does but she admits she is sick of being a carer/room-mate and she wishes she could have her husband back so she can hug him without causing pain. Also the past three years we had sex twice and the last time it ended with me needing a new CT Scan and 8 weeks bedbound. I am used to the lack of intimacy although still crave it but it must have an effect on my wife.

We have from the outset dealt with all this alone. No outside help other than about 30 months ago the doctor arraigned for an occupational therapist to come do an assessment. as a result of this we were given many of the adaptations and made to move as our old home was not adapted. Even though our GP goes to our church he states all that could be done has been done and now it is just a case of maintaining the pain medication. We took this to mean we are on our own and have struggled ever since.

I will say a prayer for your mom.

Blakespops

I would like to thank the people who have contacted me directly with their personal stories and support. one person asked me how would I describe myself to someone I have never met before, how would I let them know my personality, likes etc. Someone else asked if my social life was only if people came here to visit or do I get out and about. well the second is easy people visiting or the two people I have I can chat to online as and when they are online (about once a month) I may leave the house once a month if at all I think in the last 18 months you could count on both hands. apart from maybe spending time in shed during the summer or sat in the garden for a coffee I have not wanted to go out because I feel unworthy and feel people judge me and look down on me. like when my wife is with me and people talk to her asking how I am rather than asking me directly like I am not there.

As for how would I describe myself I am normally a joker, love to bake, provider for my family who are so precious the world revolves around them. I was a hard worker and a loyal friend, Christian who helps church members and their families who have disputes with debtors or utility companies etc. This is one thing I have been able to do for the last three years helping some claim benefits or sort heir appeals and so far all managed to win their appeals. but I wold now say old banger in need of new rebuild of engine as failed mot. engine leaks fluids and re-spray would help.

Bennifred

Blakespops, I am so sorry for your situation. It is very hard to deal with when your world shrinks because of medical problems. I think Dimey is right about neededing to change the way you think about things.

My position is nothing like yours, but my life changed a few years ago when I developed an untreatable, progressive form of multiple sclerosis and I found that seeing an empathetic hypnotherapist incredibly helpful, despite being very sceptical and resistant to the idea beforehand. It took a fair few sessions, but eventually I found that my focus changed, and I became more accepting and calmer about my situation, and most of the time I am able to focus on the positives in my life. Hypnotherapy is a very powerful tool for coping with pain, too.

My very best wishes to you.

help4help2013

Blakespops wrote: »

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.

you have always got friends here any time you need to chat or just looking for support we are here for you

i know it can be hard at times and you will feel it but this will pass i know it might not feel like it at the moment but it will x x from you have said you have a loving family and you also have your faith you have helped a lot of other people over the years from what i have seen you have written and within your faith that will never be forgotten and one day you will be rewarded for you many times over.


have you contacted any of the Christian charity in your area ? or any of the local charity that might be able to help you with extra support? and are you getting all the benefits that your entitled too ? example attendance allowance, disability allowance , personal independent payments?

Torry_Quine

help4help2013 wrote: »

you have always got friends here any time you need to chat or just looking for support we are here for you

Seconded. Feel free to send me a PM if it helps

poet123

Have you considered doing a course at your local college? Most colleges have Inclusive Learning Teams who will support you fully from the moment you arrive at college. Have a look at a prospectus and see if anything takes your fancy. It would be a change of scenery and a break for your wife too. Additionally, you would be in the company of those with similar life issues to cope with.

Dimey

Blakespops wrote: »

>>>
My wife is wishing to go on a two day ferry to Belgium that we normally do annually as a tobacco run buying a years supply. This time she wants to go alone so she only has to care for herself and not me or our son and she deserves this time away but that would need me to be at my best or cover just in case so we are even stuck not knowing what to do here.<<< .

Worth checking out whether your local social services offer a Carer Relief service. Sounds like your wife would be an ideal candidate for short break cover.
You probably both need a break.

Sounds like you also need to take some of your own advice about finding benefits & support Blakespops. Did you realise you are still describing yourself by what you used to do rather than who you are now.

I wonder whether there's a service where you and your wife could learn the different sexual techniques you need to adopt. Might be worth a Google of sex for the disabled.

I can't help but feel the NHS must offer more guidance and support than your GP has disclosed. I wonder whether your area has a Regional Rehabilitation Unit where you could get help from an outreach programme. Maybe your GP could refer you to a specialist support unit or the PALS patient liaison at your local hospital might know more.

mazza111

Nothing worse than being in chronic pain and not being able to get anything to help or even relieve it.

I love heat pads, even hot water bottles for a wee bit of relief, not very long lasting though, but it's nice to get relief even for a few minutes. I would also suggest creams like deep heat/freeze, again sometimes only a short time thing, but if there's nerve damage they don't normally work.

I can't offer advice on the other stuff as I haven't been there, but hated to read and run and wanted to wish you well in your future. My daughter went through a similar time when she finally realised that, yes, she was disabled, no she wasn't going to get better. Since acceptance, she's been able to concentrate more on the positives on her life and her physio. Which has helped immensely bar a few set backs (back at A&E tonight for the first time in over a year.) So good luck in finding a way to accept your disability, maybe once you do that, you may find other ways of doing things. I hope so.

sunnyone

Blakespops wrote: »

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

Im 45 and in a NHS powerchair full time when Im not confined to my bed (NHS hopital bed provided for me at home so I can sit up, adjust my position etc. without help), I also have Aspergers but to me thats a gift and not a disability.

I have spinal injuries and Im in constant pain, you need to see a diffrent pain specialist because yours isnt doing their job, I will always be in pain but diffrent meds can make it more bareable, I dont understand why your meds arent left within arms reach if you were left alone and why you were not left with a urinal (thats a dam site easier for a man).

My PRN med is drawn up into a oral med siringe so that I can take it when I need it, I spend 90% of my time in bed so this is left on my hospital style over the bed table. I can manage this despite having RA alongside two other problems with my hands (which is why I have to use a powerchair, my hands/arms dont work well enough to use a manual chair anymore)

I have a "hydrant" attached to my bed or wheelchair (Im always in one or the other), its straw pins to my front so that I can sip whenever I want, I normally have a cup (like the take away coffee cups but hard plastic) for other drinks, I dont like to have someone sitting with me 24/7, we make as many provisions as possible to allow me to manage as much as I can myself, it make me feel less of a burden.

You can change things to make it easier to take back some control of your life, little changes can make a big diffrence, sock aids make very little diffrence to your life when you are severely disabled (and they are rubbish anyway, Ive got three diffrent styles and I challenged my daughter to use them and after half an hour she still had bare feet and she was out of breath just trying to use them)

I concentrate on what I can do, worrying about what you cant do is a waste of energy and its a quick way to feeling suicidal, everyone gets the "why me's" sometimes, its normal but if its all day, everyday its time to see a physcologist.