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Thread: Struggling with life

  1. #1

    Struggling with life

    i know this is going to sound depressing and like a plea for help, maybe it is. i am really struggling with life in general. i just feel depressed all the time, i have 2 young kids 5 & 7 who i cannot do anything for, i have no influence on how they're raised and because of that they dont really acknowledge me that much or at least it feels that way. i'm 33 and have a beautiful wife but our relationship is more business like than husband and wife. We cannot do what normal couples do as i have no physical ability whatsoever and we are stuck with carers 24/7 so we hardly have any time to ourselves at all. i feel like i cannot leave the house and i have'nt since early september. i just cannot go out i feel as though its to much hassle and that theres nothing out there for me anyway. we can't go out for food or drink as i dont want to sit and watch others eat and be merry, meaning i can't say i'm looking forward to xmas. i can't speak to anyone in my family as its hard enough on them as it is and i literally have no friends anymore. i feel that i have been a burden long enough and that my wife and kids would be better off without me here. i just dont know anymore.

  2. #2
    Wise owl
    Hi Mik, yes you'r right you do sound as though things are getting to you. Yes it's tough on everyone relationships, families, friends.
    I know you said that you have 24/7 help/ care but have you consider having a chat to M.N.D. Connect or a M.N.D.A. Visitor perhaps, just someone to talk through your thoughts maybe ?
    Anyway you sound just like me, & my name's Mick too. But I don't support Liverpool though. Afraid it's S.W.F.C.
    Hope to be of any help to you mate, as we're all in the same boat.
    Best wishes Mick.

  3. #3
    Forum Member Terry's Avatar
    Join Date
    May 2012
    I think you've summed it up quite well Mik;

    We are a burden to society and our family, it's horrible. Life is so hard that we don't want to put extra burden on our carer (called a wife) to do other things.

    However I am still quite lucky to be able to put a contribution into the forum and helping the hospice. So maybe of some use.

    I don't know how I will cope later on. Maybe you should set big goals, like going out for a hour in two days time, people watching is quite good if you can't think of anything else. Have you tried a day at the hospice, you've nothing to loose, well not much.

    It takes so much effort just to exist, I sometimes don't want to make any more effort to go out.

    I wish I could help you, Terry
    Last edited by Terry; 1st December 2014 at 15:14.

  4. #4
    Hi Mik, what can I say except you are not alone. My kids are older than yours and at a stage where they spend most of the time in their bedroom anyway but I still feel our relationship has changed enormously. My honest opinion is that they hide an awful lot of what's going on in their head and underneath they just want to be the same as always but they're unsure how to respond. Can you still talk? Although it's hard I often find that getting one of them on their own and talking about stupid stuff can elicit a very good reaction. I've also been through the "sit at home" watching the world go by stage but ultimately decided it was a road to nowhere. Again friends you had before MND are still there but most of them are too scared to call because they don't know what state you're in. Reach out to them and I suspect they'll respond. I've started playing a lot of online chess because it's something I can do and I've started having a chess evening here with some friends once a week. I can't move my hands or arms but my opponent can move my pieces for me. It's just a really good opportunity to feel relatively normal and chat to friends. I know a lot of this depends on whether you can talk. Although I have very little use left in my legs and arms my ability to talk is largely unaffected and I know that is incredibly lucky. My relationship with my wife sounds similar to yours. She's bitter about the situation but at the same time feels guilty because at the end of the day she can still go out the door when she wants to. I have found that reaching out even a little bit does get a really positive response. It's hard, try not to feel guilty that you're putting her out all the time try to have a warm conversation. I guess we are all feeling our way and certainly for me the end can't really come soon enough but in the meantime I have found that making a little effort on my part usually get far bigger response back from the people in question. Good luck and keep talking about it!

  5. #5
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Colin;

    I used to play online chess over a year ago but have lost my connection/link. I used to play with "Free Chess" and got on quite well. Do you use eye gaze?

  6. #6
    Could you not still go out together as a family if you have use of a wheelchair. I know you can't always join in with things, but as a parent I loved to watch my children enjoying themselves.
    Obviously being male toileting would be far easier for you if you carried a urinal with you.

    I would dearly love to take Jean out and about but for us it's impossible as she needs to be hoisted for toileting so I can only walk her into town for an hour. When she's home from hospice I have already planned to take her to see the town Christmas lights.

    I know it's hard but all you can do is try to be positive. Negativity just grows and grows and it will be tough but just kick yourself up the bum, take a deep breath and start again. Take each day as it comes and be kind to your self.

    (Hugs to you)

    Alison x

  7. #7
    You post is so moving and yes, there are many of us out there who feel the same. I appear to be going downhill all the time and to me do not really have any quality of life. What is the point of going out if you cannot walk far or speak to people? Medical science keeps us going, but at what cost? All these posts are not negative, they are just facing facts and to show you there are many, many people out there who feel the same. Good luck.

  8. #8
    Hi Mik

    You mentioned you haven’t gotten out in quite awhile. Take some fresh air, even if it’s cool and brisk. Get some sunshine on your face even if means just sitting in a park or your backyard or anywhere outdoors.

    Being indoors for that length of time only adds with more depression setting it, and can make a bleak situation feel even worse. Can you get out and about? Do you have any pets, a dog perhaps? If so can you take it for a walk? Attach the leash to your chair. If not consider one, your children are at the age to enjoy one and they provide some great family bonding for all. When my husband suffered with severe depression, a nurse friend told me to get him a puppy I did ! It did wonders! Gave him a reason to get out of the house, and took away some of his daily loneliness (our kids where in school and I was at work).

    I sincerely hope you can still see and find the purpose and meaning in your life Mik, and still have happiness and joy in whatever form it may come in now.


  9. #9
    Forum Member Smudge's Avatar
    Join Date
    Jun 2012
    Hampshire/Dorset border
    I can't pretend to know how you feel Mik, but speaking as the wife of someone who had MND i can give a perspective from that angle. I never, not for one second saw John as a burden or inconvenience. I always missed and wished for the old John, but the fact that he was still around in any form was enough. Sure he couldn't rescue me I was hysterical because a record breaking spider was in the same room as me, or put the oil in the car, or fix things I broke. But the reassuring, and sometimes exasperated look that he could still give me was enough for me to know he was still there by my side, just in a different way, and I could still cuddle him when I needed reassurance, even if he couldn't cuddle me back. I would chatter on about random stuff as I always did, and he would pretend to listen, as he always did. Now he's gone I only have the dog to chat to, and even though he shows the same interest as John, it just ain't the same!
    Your kids are so young, maybe they have just adapted to how daddy is and see it as normal & obviously they don't understand that it might look different to you, but trust me, those little 'un's need their dad, they just don't know how to express it.
    John went to a day centre twice a week and there were other MNDA patients there, some of whom were not able to move or speak at all, but they got something from being there.
    As others have said, maybe a bit of fresh air & a change of scenery would do you good - you'll never know if you don't try & I bet your wife would be over the moon if you suggested it - even though she'll worry about wrapping you up warm and making sure you are comfortable. It's part of our job to worry about stuff like that, and I bet she'd have still nagged you to put on a coat etc before you got ill?!
    People still need you, and don't ever think otherwise

    Wendy x

  10. #10
    Forum Member Nettie B's Avatar
    Join Date
    May 2014
    Moved to Worcester
    I'm so sorry that you feel so very, very low. I'm sure we can all know a little of how you feel ... .
    I noticed a couple of glimmers of hope in your post though. You say that your children don't acknowledge you "or at least it feels that way".
    Maybe it IS just that it feels that way. They are so very young and cannot understand what is happening to their lovely Dad.
    Like wise, your beautiful wife must know and appreciate how much you love her... something that is invaluable to any wife and far more important than any of the physical stuff.
    As for Christmas. It's such a strange time isn't it? So much hype. so many expectations that we all put on ourselves to make every Christmas perfect .... the sort we see on the Christmas cards .... the beautiful parents with their 2.5 children, always a pigeon pair smiling happily and playing happily with their new toys. Do any of us really have this, whether ill or well?
    Mik, my Mum, at 54, was physically in perfect nick. She was healthy and attractive BUT she couldn't cope with life not being as she thought it should be. She expected herself and her family to be perfect and be better even than the Kellogg's Cornflake packet family. (You may be too young to appreciate this image but they were akin to the Christmas card picture ... but managed to keep up this fašade every day of the year.)
    Dad and I loved her to bits. We were ordinary people and imperfect.
    Mum made the decision to end her suffering. So many people were distraught. I can't speak for Dad but certainly as far as I am concerned , 35 years later I still struggle. I still feel so much guilt that I hadn't made it more clear how much I loved her, how much I wish I had spent more time with her, how I failed in making her see how valued she was, how I wish I had never said any unkind words .....
    Mik your loved ones could go through all this and I can tell that you wouldn't want to cause them so much pain ... pain that won't go away overnight.
    You aren't a burden Mik. No one is in truth. I would have loved to have more years with my lovely Mum. I never resented the times she was hard going. She was worth it all ... and so are you!
    Mik. Cries for help are nothing to be ashamed of. They are just that. I do wish I could help you. Those of us who have read your posting will be feeling your pain.
    You have reached out.
    You're still fighting!
    Hard to believe in a God isn't it but if there is one, may he bless you. X Nettie

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