Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Barbi and Mick, Barbi, I don't know how you do it. I would have a hard time if the places were switched. My husband picks up my pieces and I'm so glad he can. Know that we are here for you. We yell, scream, cuss, whatever we need to get thru the minute--that's whats ok. Hugs to you, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Hi Barbi and Mick, So sorry to hear that your hubby has this terrible disease but glad that you found us and are there for him.....yes, it is hard to be a caregiver, I am sure...............you just watch a person and feel so helpless at time, I know, but KNOW that we are here for you and this is a place where you can ask questions, rant, rave, scream, cry, whatever you need to do. We have ALL been there and will be there again, I am sure.........just know that we DO care and are here for you. Hang in there............we are hoping for better days ahead. Hugs, Darlene Co-Owner/Moderator How carer's feel Just to let you know that I read all your messages with great interest. A lot of the medications that you mention I haven't heard of but they be just under a different name in England. My husband is on a variety of meds all for different complaints and it has also been suggested that 'a lot of it may be in his head.' Tell that to him when Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Barbi, I've been battling this illness for nine years and seem to be getting the rough end of it lately. I rarely get out of bed but the VERY BEST part of my day is when my husband gets home from work and cuddles up silently behind me -- by far, his touch alone has been the most effective medicine, even when I was near death and could not speak, see, or walk. I used to ask for the " hubby bubby " which he figured out was his oh so cuddly soft belly. Our bond is great even though he feels as completely helpless as you do. You should definitely buy a book called Mainstay. It is written by a woman who spearheaded caregiver support groups here in the states. I'm sure you could google for such groups where you are. I hope the healing for both of you is swift and gives you both a break. Kelty (the Esther I had to make up because my real email addy had been bouncing Yahoo since last spring) babs7g wrote: >Just to let you know that I read all your messages with great interest. A lot of the >medications that you mention I haven't heard of but they be just under a different >name in England. My husband is on a variety of meds all for different complaints and >it has also been suggested that 'a lot of it may be in his head.' Tell that to him when >he is having bad tremors and he can hardly put one foot in front of the other! He >often spends hours in bed as he is so tired. He went for a spinal MRI scan last >week....no results up to yet. As a ' carer ' I sometimes feel so frustrated that nothing >that I say or do can take away the pain and the feeling that you are no longer useful to >anyone. I need my hobbies to keep my mind occupied on something other than >watching my husband suffer, They and close friends who let me talk my frustrations >out help me to cope! Joining this group and letting my husband know that he is not >alone helps me to cope! Any illness puts a strain on relationships but with this disease >there seems to be no pattern to it and every day brings you all new challenges. I hope >you all keep as positive thinking as most of you sound. Any good news be it about >births marriages etc is something happy to read about. All of you out there keep >smiling. Our thoughts are with you all. > >Love > >Barbi and Mick > > > > >~~~~ *** ~~~ *** ~~~ *** ~~~~ >The Neurosarcoidosis Community > >NS CHAT:- Has been cancelled for now. > >Message Archives:- >http://groups.yahoo.com/group/Neurosarcoidosis/messages > >Members Database:- >Listings of locations, phone numbers, and instant messengers. >http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
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