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petal
31st December 2012, 23:32
I don nt wish to be ungrateful to our many good friends and family, but i wish they did not text or facebook all the new year rubbish about good health and wealth as i have just with the help if carers put my hubby to bed switched on his ventilator and am now sat reading all this with great sadness because i know what next year holds more grief ,sorry if i sound miserable but thats how feel .


Take care petal

Chrissy
31st December 2012, 23:45
Hi Petal

I understand completely, I have just left hubby in hospital, on oxygen with nurses who have no idea how to cope with him but I suppose other peoples lives do still go on, I had a freind come to see us over Christmas who burst into tears when she saw Bob, so I comforted her only for her to say "sorry I am not coping I have just found out I have got Fibro Myalgia (self diagnosed). To begin with I felt like saying b******s to that try coping with MND but when I though about it, her problems may not be as bad as ours but to her they are real, silly analogy maybe but it made me think about how strong we are (and we are Petal) and they simply can't put theirselves in our shoes so we have to understand them, be the bigger person I guess. If we weren't coping with this we would be joining them.
Sorry if this sound preachy, I really do know what you are going through but I think we have to be the bigger person and say good luck to you think yourselves lucky you don't have our problems.

Said with love I do hope I don't offend you

Chrissy

petal
31st December 2012, 23:59
Hi Chrissy thank you for your replie not offended at all i know you are right peoples lifes have to go on think i just got caught up with all the emotions of the time of year ,hope your hubby will be home soon


petal x

john
1st January 2013, 01:53
Hi to you both. i know where you are coming from. Last year I had a wife, this year I have a memory. People used to say to us how do you carry on as if nothing is happening . How do you get through each day. There is no answer other than to say what is the alternative. You can wallow in self pity and make everyone around you uncomfortable or you can get on and make the most of the situation.We did the latter and just tried to make Irene's life as pleasant as it could be . She was laughing everyday to the end,. a tower of strength.
I hope I have the strength if I am ever faced with a similar situation.

john

magic
1st January 2013, 07:24
Was feeling like Petal when Peter went to sleep, with ventilator on,last night. On my own and a year after diagnosis,I struggle to make the most of the day without yearning for better yesterday's and fearing the tomorrows. We celebrated our ruby wedding on Sunday and the love and support at our party was amazing and I hope to make this strengthen me for the challenges to come.
I do wish you all the happiest new year you can secure and thank you for the support I have received on this forum.

Magic

Rory
1st January 2013, 16:51
Hi all
As an MND 'Member with PBP , I sympathise with the family/ carers . I am reasonably certain about my future (or lack of it) but there is unquestionably an uncertainty for those we leave behind and we often forget that. I have said before on this forum , I still have a duty to male my wife happy and be there for her - it remains a partnership. So much so that we have often said that we forget about our circumstances with the illness. We all need to live for today if possible and a great tomorrow in the same way. Hard as it is , we must try. I too do not want to go to hospital and I recently refused with a nasty chest infection. I know my wife gives me the best care and I respond to that. It must be hard to go home with your loved one in hospital wondering if the hospital have knowledge about the disease and the needs of the patients.
All i can say is be strong , be positive and use this forum to share and receive support
Best wishes to all
Rory

petal
1st January 2013, 17:29
HI Rory ,my hubby was in hospital for six weeks in Jan 2012 he has said it is the last time , although nursing staff were kind had no concept of mnd. ,and although i do not post often when i do it is comforting because every one on here understands and my only new year resolution is to continue to deal with one day at a time .

Take care Petal

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