Apparently I am a f****** idiot

[Kayleigh]

Hello Believe,

Welcome to this forum. My heart goes out to you and your family.

It struck a chord with me when I read in your post that your husband says that 'no-one knows how he feels'. I used to feel like that, but by accepting support available from the wonderful people on this forum and at the MNDA and through counselling, I no longer feel like that.

I would say to anyone affected by MND who feels alone, you are not alone in the way that you feel or what you are going through. We all go through so many emotions - you are not alone if you are suffering from anxiety or if you have feelings of devastation, anger, frustration, extreme sadness and despair. Sometimes we can feel completely overwhelmed by these feelings and we can also feel lonely and isolated.

However, by choosing to accept the help and support that is available, we are hopefully able to make the most of every day and have many happy times with loved ones and friends.

It is never too late to get support from the MNDA or this forum. It is also worth considering counselling, and many hospices offer this.

The important thing is to know that there is help and support available which can improve the quality of life for you and your loved ones.

Please believe.... you are not alone.

Best wishes,
Kayleigh x

[shrew]

So sorry to read of your situation Believe, it must be very diffiuclt for you and your children. You must feel that you are treading on eggshells x

[Boiler68]

Hi Shrew and Believe

I remember Ellie saying those exact words about treading on eggshells a while ago but that's exactly what's it's like. You have to gauge the mood and time it right before you speak sometimes. All I really want is more happy than sad memories. It is all quiet on the Western Front at the moment; we are looking forward to having all our girls home for Christmas. The last couple of years there's been one missing because of work commitments.

I'd like to wish all of you on the forum a very Merry Christmas x x
Boiler

[Doug Carpenter]

Hi Boiler and Believe

I’m truly sorry to read about the awful situations you find yourselves in. So unfair!

This won’t be of much immediate help to you I’m afraid, but I wanted to let you know of a trial being started by psychiatrists at UCL designed to address this problem of a patient’s acceptance of MND. It’s an adaptation of a talking therapy that has been used successfully for other terminal conditions. The project is called COMMEND. A couple of us on this forum were involved in the early stages.

At present they are recruiting and training therapists for a feasibility study.

http://www.ucl.ac.uk/psychiatry/acce...y-motor-neuron

Doug

[Boiler68]

Hi Believe

I tried to send you a private message but it won't send.
Just wanted to let you know I'm thinking of you too and I wish you and your family a very happy, peaceful Christmas.
Best wishes, Boiler xx

[Kayleigh]

Hi Boiler,
Just wanted to check that you have seen this little message I left you on the music thread.
http://forum.mndassociation.org/show...c-thread/page9
Love and best wishes
Kayleigh x

[Boiler68]

Hi Kayleigh

Sorry I missed it! Thanks so much. Yes Elvis was and still is the King. Particularly like his gospel music. What a voice.
Thanks again. It really cheered me up.

Have a lovely Christmas xxx
Boiler

[Kayleigh]

Hi Boiler,

Glad you enjoyed Elvis.

Wonderful to hear that you will have all your daughters home for Christmas - sounds like it is going to be a lovely family celebration.

Merry Christmas to you, Mr Boiler, and your girls.

Kayleigh xx

[Becky boo]

Hi Boiler,
After reading this I had to reply. I am in the same position but my husband has familial als so I’ve been a carer for the last three years, since his symptoms worsened and he became completely dependant with no let up and I totally feel like when he’s nasty and unappreciative , I just want to leave him and move on with the kids! But I can’t as who would look after him! As my husband will more than likely need the same level of care for a many number of years I’m struggling to cope with this prospect. As we run our own business it means we’re still working and I’m with him 24/7! The only advice I can give is that you try to book some sort of care (try to do fun things with friends)! Maybe even an anti depressant just to take the edge off your feelings.
Keep positive! You are a fantastic person for doing all that you do.

[Terry]

Hi Becky and welcome to the forum,

Sorry to hear that you are in a similar situation. Sometimes counciling can help both of you.

Antidepressants can have a remarkable effect on the Mnd person.

Best wishes, Terry

[Kayleigh]

Hi Becky and welcome,

I am sorry to hear of your husband's diagnosis.

I have a tremendous admiration and respect for you and all the other wives/husbands/carers on this forum who dedicate so much, and sometimes all, of their time and energy to caring for their loved ones.

Reading the posts of those who care for a loved one, has given me a valuable insight into the realities and challenges that they face.

Although my family sometimes tell me how challenging things are for them, they do not always go into detail about their thoughts and feelings because they do not want to upset me. By reading the posts on this forum, it has hit home that although it can sometimes seem like a 'nightmare' for me, it is definitely no picnic for my loved ones either - and so every day I need to make sure that I show them my appreciation for all that they do.

Many thanks to all those who care for a loved one and who share their thoughts, feelings and experiences with us on this forum.

Becky, you are always very welcome to return to this forum and post again, if you wish to.

The friendly folk on this forum are always very understanding and you and your family will always find support here.

Best wishes
Kayleigh

[Boiler68]

Hi Becky

I'm sorry to hear you are in a similar situation. My husband has nobody else who would step up to take care of him either (I would not want for any of our children to take this on full time as their lives are just starting really) and a care/nursing home is just not an option. I don't want to sound like Florence Nightingale but I know in my heart of hearts I could not abandon him. I completely understand that you feel overwhelmed by the prospect of years of caring. We are 10 years + in on this and it is very, very difficult at times. Sounds like I'm always moaning about him. But it's not all bad. We've actually had a decent, quiet Christmas. It's the uncertainty of when it will all blow up again. I hope you take comfort in knowing you are not on your own. I have had so much support from people on here; from others carers and from those actually with an MND. Having heard from others on here (not from my husband as he never says much about his own MND) about the frustration and keeping quiet themselves about their feelings on their MND because they do not want to burden their partners any more than necessary is just as saddening. I think the best we can do is try to enjoy the happy times even though they may be less frequent than before. I am thinking of anti-depressants actually (hate the thought of it as I've been there before after the birth of one of our girls) to see if it helps me cope. I think both of us will miss our youngest terribly when she goes to uni but we do have another of our girls home from the ships at the moment. She's actually debating whether or not to go back at all because one of her friends went overboard a few weeks ago and was deemed 'lost at sea' and the young man in the news this week who went overboard in Puerto Rico was also known to her. It puts my woes into perspective right now seeing her grieving and I am secretly hoping she doesn't go back. Anyway, hang in there Becky..keep looking in and offload if you need to. It does help.

Best wishes,
Boiler x

[Kayleigh]

Hi Believe,

I think that you need to have made a minimum of 5 posts on this forum before you can send or receive a Private Message. I am not sure why there is this rule, but I think I have seen this explanation given to others who have not been able to send a PM.

Maybe other folk on the forum will be able to correct me if I am wrong/give further advice?

Best wishes
Kayleigh x

[Penwiggle]

There is a limit of 50 messages, that includes the ones in your inbox and sent box. I'm approaching that limit as you and I have been PMing so much (hehe). I've been clearing out old ones.

[Kayleigh]

Hi Penwiggle,

Lovely to hear from you. How are you?

So that could be another reason why Boiler can't receive a PM from Believe? - If you and Boiler have been sending each other lots of messages then maybe Boiler has reached the max of 50 messages?

Best wishes
Kayleigh