My partner Martin was diagnosed with this horrible desease on june 19th 2008. I am so scared of this monster of a disease, why does it happen, where does it come from? Cant we find a cure? please God find one soon. There are htousands of new cases every year why cant we save these peoples lifes from this horrible disease.
Carrie - is he home yet???. That is amazing that B ran the New York marathon - where you there to see him?? My dad was a sprinter many moons ago but still ran the veterans race in Athens about 8 years ago! Paul proposed to me when we were having a meal on the Seine....by a card he had recorded a message into I might add...honestly!! Must have a look at your song on you tube.....ours was "falling in love with you....by the man himself....Elvis! We only had that as we had been in Vegas...not very romantic of us eh! followed by the Bee Gees how deep is your love!. I love first dance songs...as soon as i hear someone's got married i always ask what the song was!
Jay - I was playing mambo no 5 in the car today....its on a cd i have! i also seen Rick Astley in an 80's reunion tour last year when I was pregnant (preferred Paul Young myself that night...he was still looking lovely!
Dad still in hospital and will be all weekend now. Going back up in a bit.
I'll fill you all in on the details tomorrow as it's getting late now (well it is now we're in our new routine).
Good first songs everyone so far. Lesley, we left the register office to Elvis's The Wonder of You. I can still remeber crying when I heard he'd died. I was 16! B proposed to me by card too.
Yes I did go to New York with him, and he has a place in the marathon there for this year...
Sweet dreams everyone and I'll try and catch up with you tomorrow.
CARRIE CARRIE CARRIE JUMPING UP AND DOWN WITH JOY FOR YOU!!!! SOOOO PLEASED HE IS BACK WITH YOU! xxxxxxxxxxxxxxxxx BIG BIG HUGS TO YOU BOTH xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Our first dance was to Luther Vandross 'So Amazing' words very apt at the time as matthew had just finished RT
Shattered after matthews great aunts funeral today - vicar banged on about death and how we never know when it will hit us - infact its too much to put on here surfice to say i wanted to stand and shout shut up you idiot you have no idea what your talking about but of course i didnt it was like one of those dreams i'm sure many of you have had.
anyway on the wine shattered and off to bed in a minute but just wanted to send mac hugs to you all xxxxx
Carrie-I cant belive it FANTASTIC news Im sitting hear crying all over my laptop.......... Im so happy for you bothand so relieved hes home where he belongs ...with youxxxxxxx Got to go my little one had sickness bug and starting again!! Love and sweetdreams to you all xxx Debbie
Carrie, so pleased for you both you will be celebrating tonight I bet B is soooo glad to be back home with you xxxxxxx
Emma sorry you have had such a difficult day today, it must have been hard for you, hope you enjoyed your wine, I am having a wine free night tonight will make up tomorrow no doubt xxxxxxxxxx
Jay, it good to look back at years gone by and have a smile, so precious xxxxxxxx
Lesley, hope your dad is doing better xxxxxxx
thinking of all my lovely friends, early night for us tonight taking Martine to a kids day tomorrow uncle billy the clown etc it shall be fun, well at least we are going out managed to talk Martin into it.
Carrie - at long last,FANTASTIC - B is finally back home where he belongs. Big hugs for you both tonight x
Gayle - enjoy your family day out tomorrow - that's great you've talked Martin into a day out. x
Just home as me and my sister took my mum out for a couple of drinks to help her chill out for an hour or so (she NEVER drinks in the house for some strange reason...unlike myself!) - i took the car so I had ONE half lager shandy!
Well the first 24 hours have gone ok. We have a different care provider from the company that came in before B went into the hospice and the ladies we have seen so far seem very nice.
I can believe the medication he has come out with. About a dozen different types. I have to refer to the sheet each time I dish them out as there’s no way I’d remember them all.
Yesterday was a bit of a farce. I spent all day waiting for the equipment to arrive and it turned up just as I had a phone call from the hospice to say that B was on his way. So we ended up with B arriving shortly afterwards, me sitting in the ambulance with him and the equipment man and the two ambulance men putting the bed together. Once the carers arrived at 7 and got B into his PJs he was a lot more comfortable.
Although it’s scary now B is so immobile it’s much more relaxing having him home so I can potter about and he’s here.
Thanks for all of your good wishes. They mean so much. I think it’s amazing that we are all having to deal with so much but can be there for each other.
Lesley – hope your mum enjoyed her trip out with you both. My mum and B’s mum both say they never drink in the house too. I must admit that I hardly drink anything now, which is a shame as we have a wine rack full of some rather nice wine. One day! Hope your dad is comfortable and improving.
Gayle – hope you all enjoy your day out tomorrow. I remember when my six foot five inch tall 17 year old used to cry at clowns. What a wimp!
Debbie – hope your little one is feeling a bit better now. It’s horrible when they’re sick. Hope your laptop didn’t get water-logged.
Emma – I love Luther Vandross, So Amazing must have been so moving for you. It was only when I looked back over past postings and read your profile again that I realised how young you both were when you got together. The funeral sounded awful. It must have been so hard for you and probably no one else would realise. Well done for getting through it, it must have been so upsetting.
Jay – Jon sounds a bit like B. Although he’s a lot older, B’s very young at heart. One of the things he used to enjoy was kareoke (?), usually after one or two or ten drinks. Some friends of ours have some really cringe making videos of his performances. His Mambo No5 had to be seen to be believed. I’m glad that writing about that made you smile. That’s what I try to do when I feel fed up is to think about all the love we share and the fantastic things we have done together. No one can take our memories away from us.
I think I’ve gone on enough for now. B needs his tea before the carers come in. So, really big hugs to all of you that I have and haven’t mentioned. I’m thinking of you all.
Well exhaused with the day out but Martine really enjoyed it Martin did a little I think, we saw a few friends which was nice, Martine spent the day with here best pal Keri, and didnt want to come home, well tonight it is definetley wine time!!
Carrie, so happy for you bet you are on cloud nine having B home with you, did you sleep lastnight???? Its also very good that you are getting lots of help from the carers. Enjoy the rest of your weekend and your husband. xx
Debbie, hope you little one is feeling better today?? have you heard from your mum and dad again?? xx
Lesley, glad you got out for a wee drink with your mum, bet you made up when you got home eh lol?? hope your dad is well. xx
Diane and Becca thinking of you both. xx
Joan, hope you had a fantastic time with David. xx
Emma, hope you and the rest of the duracells are well. xx
Am feeling better today after yesterdays funeral - no sleep last night tho - matthew tossed and turned all night - hopefully will get one tho tonight - am on the wine and having a takeaway!
Have been a little worried about Matthew today - last night he was a little vague - not somehting that has happened in a while and this morning he got up at 8am took his drugs and went back to bed saying he had a really bad headache when I questioned him to find out how bad he said he didnt know told be to shut up and get out! I ignored that comment cant take these sorts of things to heart anymore but he hasnt been aggressive like that in a long time. He got up a midday took his anti seziure meds and said his head was still bad and went back to bed - I asked him on a scale of 1 to 10 how bad he said it was a 1 - i quesitoned it as 1 is not bad at all and he said oh i dont know its the worse one I have had in ages and promptly went back to bed. - keep sticking my head round the door to make sure he is breathing - stupid hey! He finally got up at 6pm and seems ok - headache has gone and feels guilty he has been in bed all day!!!!???? Its so hard to know if this is just a normal bad headache that we could all get or is this to do with the BT and the fact they are redcuing his dex so the swelling has increased - oh I dont know - surfice to say am wathcing him like a hawk now!
Poor kids tried to hard to be quiet and everytime they squeeked i'm telling them to shut up. They have now both gone off for the night to a nanny each so have some peace and a LIE IN WHOOOOOOOOOOOO!!!!!!
Anyway enough of my ramblings hope everyone is having a good weekend
Carrie so glad B is home and I can tell by your post you seem happier and more relaxed. I hope you manage a peacefull night! - a wine rack that wouldnt last 5 mins in this house!!!! Yes we were 18 when we first met - ahh!!
Lesley - hope your managing to have some sort of weekend & hope your dads doing a bit better x
Jay & Debbie hope your both ok?
Gayle - hope your ok too & had a good day out today - oh and HAPPY BIRTHDAY!! for tomorrow - hope you have a fantastic day xxxxxxxxxxxxxxxxxxxxxxxxxx
