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louise66
8th June 2014, 14:37
I felt I needed to find if I was being selfish by rebelling against careers putting me bed.
my wonderful husband does it at the moment. I agreed to careers getting me up every day and he has approx. 14hrs restbite pw.
I use a standing hoist and it takes approx. 10min
im a fighter but maybe he is not
I would welcome your thoughts x

pete
8th June 2014, 14:54
Hi Louise,
if your able to manage ,I can't see why not ,this disease takes pretty much everything from us dignity, mobility, speech, and independence ,so I don't blame you at all wanting someone close to keep a little bit of what makes you happier. Long may you rebell , it's hard on all sides we just tend to have to do what's expected from those looking into your world ,maybe if they had a glimpse from our point of view ,things might be far better understood ,all to easy to describe it as being awkward or difficult . I hope you find a happy medium so everyone's satisfied, best of luck, I have yet to reach your stage ,but thinking I would be much the same.

Regards
Pete

louise66
8th June 2014, 15:10
that's made me feel a lot better , thanks for your kind words x

pete
8th June 2014, 15:17
Hi Louise,

That's what we are here for, no need to thank me , it would be a real sorry place if we can't help each other ,and if the sentiments make you feel better ,that also works for me, so we both benefit ,keep your spirits up,!!.

Pete

willsandco
8th June 2014, 15:48
You, Louise, like everyone else involved with MND, realise the complications and restrictions we are either experiencing now or will probably in the future. You have your own mind and your own desires and it is important that you let people know how you feel. I hope with all my heart that you get all this resolved. I am only at the beginning of all this and my husband is wonderful but I am sure things will occur which will rock our relationship, albeit briefly. Caring was never a factor inbuilt into our relationship when we met 4 years ago. It is a constantly hard battle to cope with all this, physically and psychologically. Just keep letting people know how you feel - and rebel if you must!! Take special care joycie

Terry
8th June 2014, 19:08
Welcome to the forum Louise;

It is really down to you and hubby what the carers do and don't do. It is not rebelling unless hubby does not want to or is too tired. Pete and Joycie have said things well.

Best wishes, Terry

Jangobie
8th June 2014, 19:34
Hi Louise, although ready to accept help, Eddy is also reluctant to be pushed into doing something that he doesn't want to, especially if it is something that we can manage ourselves. He doesn't have any carers and we do it all ourselves, with the help of our multidisciplinary team. Stick to your guns Louise as everyone has said it is your choice it you feel you can manage. Welcome to the forum, they are a great bunch of people here and we all support each other. Sometimes it might just be to get things off our chest other times it is to ask for advice, and there are some really knowledgeable people on her. Take care. Love Diane

Cookewitch
9th June 2014, 11:18
I say rebel if that's how you feel. I had carers come and put Dad to bed eventually but when he was in bed I still did his medications and put him on his night feed. I didn't want to hand that over to carers as it was a part of our day together that was, although 'caring' was personal and we had our routine and I didn't want to give that up despite carers saying they could do it.

Whatever works for you both is what you should do....it's your life :)

marieline
9th June 2014, 12:07
Hello Louise, you little rebel! You are doing great, you will find that the more effort you make the longer you will keep your strength. If you can stand with a hoist, you certainly can put off the carer. Best wishes and i say keep up "the rebelling". Because there is still life with MND, and romance and S#x and fun :)
Best wishes Marieline

Terry
9th June 2014, 13:51
Hay Marieline;

I thought that we sent all the rebels out to Australia, seems we missed a few. Don't go winding us poms up sheila, there's a good girl.

Love Terry

ccinjersey
9th June 2014, 14:53
Hi Marieline

Romance, s#x and fun!! My kind of town, sounds like you guys are having a good time down under…think I will head there for next vacation, just debating now if I should bring hubby Haha :)

CC xox

Joan
9th June 2014, 16:14
Hi Louise. I say good for you,stay independent as long as possible. I was pushed into having Carers prematurely because my elderly husband can't cope, fight it as long as you can! Joan x

marieline
13th June 2014, 11:30
Hi Marieline

Romance, s#x and fun!! My kind of town, sounds like you guys are having a good time down under…think I will head there for next vacation, just debating now if I should bring hubby Haha :)

CC xox

Hahaha CC,

Certainly down under is the planet of love. Bring hubby, and he will get in the mood. What i meant is we may be sick but we are not dead. Just telling my sisters over here that they have to claim their femininity back if they are otherwise engaged haha. Anyway there is nothing wrong with a bit of loving, which could be a massage, or a nice bath ran by your beloved. It sure keep the heart happy and the doctor away.

CC you are just trying to get me banned from here for inciting the ladies. xxoo

NO ONE IS DEFEATED UNTIL DEFEAT IS ACCEPTED AS A REALITY, life is for the living, enjoy it.

marieline
13th June 2014, 11:37
HEy Terry,

It's just a sister sticking together thing. Us women have needs MND or no MND. So you guys better take notes haha.

Sending some good down under love your way.

Best wishes

Marieline

ccinjersey
13th June 2014, 16:43
LOL :)

Hi Marieline

Promise I won’t get you banned Marieline, your right we sister friends have to stick together after all we do play on the same team :)

Besides I think the Englishmen like the spicy kind anyway, but just not to spicy! If I recall my European History correctly those Kings liked beheading their women! Thank god they banned that practice because mine would have been long gone! And if my Italian Knight had his way I would have permanent tape over my mouth, but at least my head would still be attached!

Will think about bringing hubby to your planet of Love, but I’m thinking a girls night out might be a heck of a lot more fun!! Louise, this is your post so drinks are on me! Now you got me thinking about ‘The Thunder down Under’ Marieline :) (Google it Ladies, you won’t be disappointed lol)

LOL
CC oxxo

marieline
14th June 2014, 04:18
Sorry Louise for ruining your post with our antics, Just thought that guys around here needed to get the drift, if you know what i mean. Now that you have all the time on your hands, some of it can be put to fun use that involves full body massages by hubby with Ray's recommended extra virgin coconut oil, Hot bath fixed by hubby with magnesium sulphate salt which help to relax the muscle and ease cramps ( with a few drops of essential oil of course) ….:)

And you CC is trouble in the making and Terry certainly would have sent me in the dungeon if not down under for inciting the ladies, but then i am already down under Haha. And CC if you get your lips taped, it was long time coming, don't say you were not warned :).

Anyway laughter is the best medicine and imagine a girl night out! Breakfast will be on me Louise and apologies for ruining your post. Sounds good to me.

Best wishes

Marieline

ccinjersey
14th June 2014, 14:26
Awwww massages and hot oil baths...you really are the planet of Love. Sounds better then our girls not out, speaking of which must now be officially planned! Since drinks are on me, and breakfast on you Marieline, I didn’t realize we would be staying out all night till dawn! This planet of love of yours is sounding better and better!! Lol

Hope you don’t mind if all the ladies of the forum join us, I think they going to be a wild and fun bunch! Chrissy jumps out of planes, so you know we going to have a good time with her, and our love lady Debbie I think has secret ties to the mob because she can bada bing bada boom better then me!! So we won’t have to worry about anyone messing with us. Caroline has chicken chow mein on the brain so we will have to keep an eye on her, and Louise our rebel kicked off the fun so extra drinks for her! And you my sexy Aussie I know will be able to keep up with a hot blooded Italian from Brooklyn haha :)

No worries about my Prince Charming, I know there are times when he wants to chop off my head, and tape up my mouth, isn’t that how all relationships eventually wind up? lol but he secretly loves me, can’t live without me he just won’t admit, you know those types…

LOL
CC xoxo

marieline
16th June 2014, 04:44
CC , CC, CC, you girl is a troublemaker! Are you trying to cause a mutiny over here? You expect Gerald to let his Christine travel alone without him? I could never fully enjoy myself if everybody is not included, but certainly must have the girls only moment. Debbie will look after us. We definitely must have a forum reunion. I think that sounds like a plan, don't you? We must certainly consult Louise, since it's her post. I think we are on to something here, we will have to fly to England as the majority resides there., but i want to be somewhere green, warm and sunny :). There's something for the MND connect to plan :)

Looking forward to the day

Best wishes

Marieline

ccinjersey
16th June 2014, 06:39
Hahaha :)

I'm in Marieline!

Oh your ole softie my Aussie friend, sorry but no boys aloud on girls night out. We sister friends will take care of our sister friends, so no worries boys we got it :) No mutiny worries either all were invited of course. Yep England it is! Can you bring your Thunder from Down Under? That will really get the party started ! or maybe MND connect can connect with them for us! LOL

Cheers to the girls of girls night!! :)

CCxox

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