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mik
1st December 2014, 14:26
hi,
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.
sorry
mik

Wise owl
1st December 2014, 15:08
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.

Terry
1st December 2014, 15:22
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

ColinF
1st December 2014, 15:31
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!

Terry
1st December 2014, 15:50
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?

Alig2014
1st December 2014, 16:08
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

Trevorhb
1st December 2014, 17:02
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.
Trevor

ccinjersey
1st December 2014, 17:02
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.

CCxx

Smudge
1st December 2014, 18:25
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

Nettie B
1st December 2014, 19:11
Mik
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

Graham
1st December 2014, 20:00
Hi Mik,

I am glad you posted how you feel. Many of us feel the same way. Life for us is very difficult.

There is much to discuss with your children. They need to know who you really are and what your aspirations for them are.

You could join us in lobbying for the new treatments that are coming online. Others that are more advanced in progression will appreciate that.

Like Terry, I play online chess, and with all the practice I am getting rather good featuring on the top boards for Team England in International matches. The point is that one must redirect one's energies in these new circumstances.

We are always here for chat, no matter how dark the topic. I have never been challenged so much as the past seven years with MND. Prior was no walk in the park either.

Regroup and keep soldiering, but most important, keep talking.

Regards

Graham

Springtime
1st December 2014, 21:36
Hi Mik,
Have sent you a PM. x Spring

Davetherave
1st December 2014, 22:48
Hi Mik,

So sorry to hear of your situation, my father was virtually 'locked in' and severely depressed towards the end of his life and I remember posting to the forum for a bit of advice. I had asked the health centre and GP if he could be prescribed a low dose of morphine just to make him feel a bit better on a day to day basis and was told in no uncertain terms that that wouldn't be happening, I thought to myself 'why the hell not?!' they're worrying about addiction in his situation?! and I also thought that if a heroin addict did not get his methadone prescription there'd be all hell to pay!! Only in this country! I know medication is not the answer to everything but maybe you could be prescribed something like Valium just to make you feel a bit better? Not sure if it would have helped my dad's situation but I'll never know now.

My thoughts are with you

Dave

marieline
2nd December 2014, 01:15
Dear Mik, i empathise and you are expressing what we have all felt, feels living with MND. I was lucky to be on my own when i was diagnosed and from early on, i decided that i didn't want to be a burden on anyone.
When i visit my family i feel exactly the way you feel, a burden, from being the person that everybody looked up to, to the changed person, my 8 yrs old nephew is now telling me what to do. It can get depressing.
MND does not alter your ability to have a healthy physical relationship with your wife. Lack of privacy does, fatigue does, depression does. It is normal that you are grieving your loss and hopefully you will learn to accept the changes, because your children and your wife are probably doing their best as well. It cannot be easy for anybody concerned.

When i was married when i needed to get my words across, i used to write letters to my husband, that way i do not get interrupted. Perhaps you can write to your wife, tell her all about what's going on for you, you will be surprised that she too may have heaps to say. And so can you to your children.
Best wishes and take care
Marieline

Jock
2nd December 2014, 08:38
Hi Mik - You are more foregone with MND than I, but my deterioration allows me to understand you. I'm thinking that getting MND at such an early age brings an additional set of problems (a young family being foremost in my mind).

Talk (communicate to the children). We may not be an ideal substitute for friends, but you can see there is a lot of understanding and support here.

I try music to cheer up.

Kind regards

Jock

Trevorhb
2nd December 2014, 10:17
Hi Mik,

So sorry to hear of your situation, my father was virtually 'locked in' and severely depressed towards the end of his life and I remember posting to the forum for a bit of advice. I had asked the health centre and GP if he could be prescribed a low dose of morphine just to make him feel a bit better on a day to day basis and was told in no uncertain terms that that wouldn't be happening, I thought to myself 'why the hell not?!' they're worrying about addiction in his situation?! and I also thought that if a heroin addict did not get his methadone prescription there'd be all hell to pay!! Only in this country! I know medication is not the answer to everything but maybe you could be prescribed something like Valium just to make you feel a bit better? Not sure if it would have helped my dad's situation but I'll never know now.

My thoughts are with you

Dave

We have some morphine in our Just in case kit, we were told the medications in there are mainly for palatine end of life care, so it can be prescribed.

mik
2nd December 2014, 10:30
hi everyone,
thank you all for your advice and kind words. i suppose after 5 years of this (and i know a lot of people have suffered longer) i am struggling to keep fighting. i know i have a beautiful family for whom i should be able to use as an inspiration to carry on, but maybe i'm just selfish as i can't. i will try and take all your advice into account and try to occupy my time better.
mik

crackers
2nd December 2014, 10:59
Hi Mick

I first faced the terrible realisation of MND in late 2010 and since then I've had a roller coaster of emotions which have included guilt and sadness for my family . By the way I am 62 with a younger wife and 2 children 28 and 30 , one of which is at home with us.
Luckily I have been able to discuss with my children almost all of the 'what if's' and one of the obvious realisations was that I could easily have developed MND earlier. Now in my conversations with my children we talked about this and how this could have been . Obviously they are terribly sorry over my illness and show this by their love and care, but reminded me of my Brothers family. My brother was 36 when he died having suffered with MS for 15 years. My Nephew was 6 years old then, and is now 26. My Nephew has often said; allthough he does not have sad memories of his dad other than he was in a wheelchair and life was different; however, he always remembers him with love for being with him for the short time he was. He remembers simple things like sitting on my brothers lap and being pushed out in the snow. Obviously very young children do not show emotions and I think that maybe a blessing. They certainly remember things and it is important however difficult and dark things feel your children must share happiness with you and these become ' Golden memories'
My Sister in law had a terrible degenerative illness. Unfortuanately this made her incapable of almost everything.
When She became very ill her children were 2 and 4 years old. They often talk to me about their Mum and ask lots of questions about her. Other than the last 14 months of her life I am able to tell them that she was a loving, caring and devoted Mum who was also very colourful and quite zanny at times. Now my Neices love to hear this and it lifts me to tell them. The girls are now 28 and 26 years old and have made their way in life without both a mum and dad ( which is another story) They are lovely girls who are always saying Mum would be proud of me. She certainly would be proud for they have grown into the most endearing girls imaginable.
I think for a wife/husband or partner to attend with the issues of terminal illnesses they need to become much more organised and independant and this, by its nature, makes the relationship much more formal. This is a change which is difficult for all to accept. Any changes in physical contact are always concerning but hopefully overcome by the love shown by the partner in maintaining things as normal as possible. I have attended to this issue in this way.
I know their are times when I feel ' I'm loosing everything and the light's going out for me' but these emotional moments I frequently share with my wife and it's suprising how just a head resting on your shoulder may help.
Our lights are 'not' going out but remain in the hearts of our loved ones, forever. Allthough I know it's difficult but try and keep the light burning, as your children and your wife need this.

Keep strong in your thoughts nothing can take these away from us, not even MND.

If I can help please mail me

Kelvin

ColinF
2nd December 2014, 15:10
Hi Terry, yes I use an eye gaze (Tobii) for cursor movement and spend far too much time on chess.com. Typing is done courtesy of Dragon voice to text which usually works remarkably well.

Cheers, Colin

Night walker
2nd December 2014, 15:43
Hi Mik,

I am only able to speak as a carer but the message Crackers shares above perfectly and beautifully sums up how I feel about my hubby, his light is strong in my heart, even though our relationship changes whilst I become more organised and focused on his needs to deal with the demands and effects this disease is having, I draw from his strength and determination, I marvel at his patience with me and his tenacity to do what he can. He is my whole life and more, I hope he wants to stay for me as much as I will always want him with me, unconditionally. You can create many more golden memories with your children, please keep trying for them and encouraging them to share their time with you. My thoughts are with you and all the people here.
Hugs Sylv x

Springtime
2nd December 2014, 16:01
Hi Mik,
Have been thinking about you today, hoping you are feeling a little more positive about things.I echo what Sylv has said here Mik, as a Carer relationships do change as we journey through life, and this is escalated when somebody has MND. I think you have been given some wonderful advice, the writing of a letter to your wife especially as its sometimes easy to put our thoughts and feelings down on paper. I hope reading Kelvins wonderfully wise and honest post helps you a little with the children. We are always here for you, many hugs to you and your family. Just a thought Kelvin, do you think it would help your lovely wife if she came onto the forum to chat and read of others experiences? I know it certainly helps me as a Carer. Spring x

Jock
2nd December 2014, 16:18
You need a reason to continue Mik. I respect that. Crackers has given you plenty of food for thought. To ward off further short term dips avoid the Leicester result tonight :) (I'm a Gooner myself).

TJ_ASG
3rd December 2014, 14:07
Can I ask, where you got the Tobii from and was a demo offered?

Steve
3rd December 2014, 14:16
I got mine through my SALT, yes I had a demo.

Nettie B
3rd December 2014, 16:37
Terry you contribute a tremendous amount to society. Despite all your problems you are always there to "welcome" newbies to this forum and give them and the rest of us, sufferers and carers alike alike, so much support, emotionally, practically and with oodles of knowledge. Don't ever put yourself down Santa!

willsandco
3rd December 2014, 17:40
I totally agree with that, Nettie. You do a cracking job, Terry. I never believed what they said about firemen anyway! Ha! Ha!

Terry
3rd December 2014, 17:43
OK, I know you women to well, what are you after from me?

You never butter me up without a sting in the towel.

Love Terry

Springtime
3rd December 2014, 17:46
I echo everything Nettie and Joycie say Terry you are brilliant always there for everyone on here. Not so sure about agreeing about the firemen though Joycie, I've led a sheltered life soooooo what do they say about them ??? LOL xx

Davec
3rd December 2014, 18:30
Can I add my respect of you, you are one amazing person

Dave and Sharyn

Nettie B
3rd December 2014, 19:01
Dave and Sharyn .... in your case, "it takes one to know one". (Nothing to do with firemen .... just amazing people!)

Terry
3rd December 2014, 19:05
Their's lots of other really helpful people on here, Praise them. Why not, Ok, I understand, I'll make sure you all get very nice presents!!!

Just lay off me will you, love Terry LOL

Nettie B
3rd December 2014, 20:03
Thanks Santa!

Trevorhb
3rd December 2014, 20:19
Another vote for Terry, the mainstay of this forum - sorry mate.��

Springtime
3rd December 2014, 21:47
Still waiting for someone to get back to me with Fireman info.............Terry, What do they say about Fireman? LOL x

ccinjersey
4th December 2014, 00:00
LOL your sooo cute and funny Zepedee do da :)

I think Santa is getting grumpy...his busy season and all...

CCxx

ccinjersey
4th December 2014, 00:08
Hi Mik

Thinking of you as well. Please don't forget how bold and brave you really are, you went for a trach not an easy decision to make. You have that inner strength in you, take another step when your ready and go outside and take some fresh air and sunshine, you will be surprised how much it will help.

CC xox

crackers
4th December 2014, 10:57
Your a Jem Terry.
Must be something to do with the air you breathe!! but I really think its the Silly Suffolk soil you travel on? In your case I prefer unworldly as opposed to holy as this may explain your role as 'our' Father Christmas . Food for thought?
Sue's been working on getting me into my green elf leotard so I'm ready to cross the county line to help. I'm trying to drum up some support at our local MND christmas lunch this week! . There's a thought a line of wheelchair elves travelling down the A12 (road) to Ipswich; however, think it maybe wiser to come via braintree, sudbury,bildeston etc. What do you think as the 'ultimate unworldly route planner'.
Just to let you know I'm originaly from Melford and this may explain how you've arrived at me being 'Crackers'

Keep up the good work Buddy, it's greatly appreciated.

Cheers

Kelvin ( Crackers)

Elf in exile

Terry
4th December 2014, 13:08
LOL Kelvin;

I have plenty of helpers this year, so I won't need you, I'll maybe train you up next year. (Phew, got out of that one diplomatically! I don't what to imagine Kelvin in a Elf leotard).

As Cc says, I hope Mik and David are OK ish, as we know they were struggling, I do hope you can manage a smile over these posts and we are sorry this post has been hijacked as well.

Best wishes, Terry

crackers
4th December 2014, 18:49
My sentiments also for Mik and David as life is hard when you'r down and struggling.
Just hope the posts helped to raise a smile especially the imagery but in all seriousness thoughts and care are with the lads and all those struggling at the moment .

Kelvin

Nettie B
4th December 2014, 19:04
Very true Terry and Kelvin. I hope the humour in some of the posts may help those who are really struggling see what good friendships and support networks we have on here. A bit of relief from the reality of the situations that many members are coping with.
We ALL hope you are feeling a little positive Mik and Dave. We are all here for each other.

Springtime
4th December 2014, 19:35
Terry, Nettie and Kelvin well said. Positive thoughts and hugs to Mik and David. xx

mik
4th December 2014, 22:48
hi all,
i am enjoying the posts that you guys have been writing and as for "hijacking" the thread it dosent bother me in slightest, its all good fun. i am feeling a little better, i am currently blackmailing my kids, i am letting them watch cartoons when they come home from school but not until they have sat with me and told me all about their day. i always ask and the usual reply is "i dont remember" but now i'm exploiting their weakness.
but i think blackmail is helping us all and i'm already feeling closer to my children.:)
getting there,
mik

ccinjersey
5th December 2014, 01:45
YAY! that's wonderful to hear Mik

When my kids where little I would ask them 'what did they do in school today?' the all had the same answer 'nothing'. Now seeing how they struggle thru college I believe they were telling me the truth lol

Be well
CC xox

Nettie B
5th December 2014, 08:01
Fantastic news Mik!
When mine were about 6 and 8 they wanted to know more about Santa so I helped write questions for him to answer as he ate his mince pie and drank his sherry ... Questions like "How old are you?" and " How many elves do you have helping you".The list got longer every year.
This was great fun but after a couple of years they got a bit canny and repeated some of the earlier questions and we had forgotten some of the earlier answers and got them wrong! Also they got to notice that the writing was a bit like my husbands and strangely Santa had a green Biro ... just like the one he used!
X Nettie

Trevorhb
5th December 2014, 10:10
Good news Mik, you will find you have good and bad days, just hope you have more of the good ones than the bad.

Terry
5th December 2014, 11:02
Hi Mik;

I don't remember anyone saying use "Blackmail", new one on me, still anything that works is great.

Love Terry

Springtime
5th December 2014, 11:03
Hi Mik, Thats brilliant to hear Mik, you are definitely thinking and doing positive things. They will have plenty to tell you if you ask them what they would like off Father Christmas. LOL Hugs Springtime xx

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