This topic contains 23 replies, has 16 voices, and was last updated by 
Min 12 years, 2 months ago.
Dear Gill and Stephen
Well you Know I am truly sorry it has come to this stage, and as sure as eggs are eggs My young bride (Elaine) and I will have to go through this 🙁 I just hope as and when it comes we both can face it with the strenth and dignity that you and Stephen have and are facing Head on.
I admire Stephen for his decision and you for sticking with Stephen in that choice am sure it aint easy girl.
Your Posts are not Waffle Gill and you are one of the positive ones on here who I am sure you are not aware but not only have you helped Stephen through tis Godforsaken MM you have helped me and many many more with you poitive post.
I also aint gonna re read this for political correctness and or bad spellings as I am struggling to see the keyboard through tears.
Lots of Love and Hugs to you Both xxxxxxx
Tom xxxxx
Dear Gill
My thoughts and prayers are with you and Stephen at this time. Gill, Dai, Eve and Tom have said it eloquently, I am not good at words, but I just wanted you to know that I am thinking about you. I have followed your and Stephns journey with this awful disease and you have been there for me and many others and we are here for you. You have had good times and you will have your lovely memories, take comfort in your love for each other. God give you both strength.
Love and hugs
Jean xx
Dear Gill and Stephen.
What can I say to ease the heartache I know you are feeling?
There are no words that will make the journey any easier, or less painful
Niether of you can prepare for what life has in store for you.
But with what ever time you have left to love each other, talk talk and talk somemore.
Dont leave anything unsaid, dont find yourself in the future saying 'what if?' and what would Stephen say? You have the gift and benefit of time and use it wisely, recall all of the happy days and times you both had and revive them again and again. Bring back you laughter for a little while. Smile as you recall the best bits.
Happy memories are what propel me forward. Regrets are many, but mostly because we never covered or talked of the future, the future for me. What he would want for me or of me or how I should mourn his passing.
That is the only regret I have because we did not have time, he was snatched away 12 months ago today.
Use whatever time you have wisely.
If you have not done so now is the time to get the paperwork from the Dr for a form to claim the benefits you are entitled to. May just be able to stretch to a Marks and Spencer special with it! Big wink. Be brave Gill, I am here if you need me.
Min x
Dear gill and Stephen just to say am thinking about you both and sending lots of love and hope x x x x
Hi Gill
Helen told me on July 10th she was glad I was able to care for Peter at home. It wasn.t easy but as Helen said the loveliest thing I could do for him. I hope you have the chance to also do this for Srephen.
Mins post above mentions talking of what Stephen may want for you in the future.
Peter and I talked and we agreed on a coffee date every day no matter where in the worlh I was I would have a coffee date with him. It makes me very sad at the moment when I do this but also very comforting and the children often join me at the cemetry with the grand children for a picnic Sunday lunch something else we had talked about when we still could.
Just silly little things but very special ti us now.
My love and very best wishes to you as you approach the most difficult journey you will ever have to take.Teresa.
Dear Gill,
It's devastating news that you've had. Your situation seems almost unendurable, and yet you have to live through it. I hope you can find the strength to say the things that you feel need to be said and that Stephen's suffering will be alleviated in every possible way.
Thinking of you,
Eva
Thank you all so much for your kind thoughts and wishes
We are changing [b]nothing[/b]! We are ignorinig the fact that Stephen cannot get out of a chair without crutches and me heaving him up and almost falling over (we laugh! What a pair we have become)
We are trying the best we can to keep life as it was and is and will be for as long as we can muster it.
We stil [b]ROW[/b]!!! mundane trivial stuff.
We both know it must change and yes we have talked. Thank you for that reminder Min and I am so sorry that you are now facing that first 12 month date
Our rows are so silly but probably quite "normal" Stephen used to feed the dogs (2 naughty little westies)
I always said that he gave them too much food and they were getting over weight. He cannot feed them now because he is so disabled so I feed them
They are not going hungry and looking a lot trimmer. AHA I say "see you were so wrong" he says "but they were much happier and they love me more" he never admits to the little "yummies" (treats) he gives them when I'm not looking
We never shout or get very angry (never did)but we have heated discussions as usual. We still row about political decisions that have been made by the government etc, Neither of us have ever understood how 2 people with such opposite views could be so happy together but we always have been.
When Stephen was first diagnosed we were both told that mm is terminal. "We cannot cure you but we can treat you and we will treat your pain first." Well Stephen's team have come up trumps every time. I cannot say that he has never had pain but they have managed to control it to a level that is OK to him although his pain seems to be beating the medication now.
I just hope that they manage to get his pain medication right.
Thanks again for all your good wishes Gillxx
Hey you two a good row is good it clears the air (think of thunderstorms, how good the air feels after one)
My Young Bride and I have struggled a fair few time of her trying to help me up of the floor many a time.
Good Luck with the Pain relieve hope that is soon sorted out.
Love to you Both
Tom xxxx
Dear Gill.
I am happy your still able to laugh at life.
Might I suggest that you seek a Macmillan nurse now. they really are amazing at the pain game.
They come to the house it is there job to ensure Stephen is pain free. But not so out of it he cant communicate or join in and argument. I found the support amazing and the products they supply to make life and its problems with an mm patient. No other organization can step up to the plate quite so fast. there are a whole range of things that are available to make Stephens life a little easier. Just simple things like a piece of kit to help him get out of bed. then there are zimmer type frames, seat for the shower or bath etc etc. These are there to make life a little easier rather than struggling and pulling muscles. You will have to care of yourself Gill, its hard and has little reward.
I used to get up with peter in the night rather than worry that he had fallen somewhere on his wonderings to cope with the pain in the middle of the night.
There is a terminally ill allowance which you are eligible for which means you can order the odd take away and have a night off! lol Hope you are now applying for carers allowance too. Your Macmillen nurse will help with all these things and I urge you to get your Dr to send one to you. Ours was an angel.
My 1yr point was made so much easier by my son and his wife. I am living a different life now, not one I chose but I get by.
I feel for where your at at the moment and hope you can laugh and argue for a good while yet.
Love
MInx
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