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care for the cares

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#1 Bobby Dazzler

Bobby Dazzler

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Posted 28 August 2009 - 12:19 AM

Morning all, its a sunny day here in Bonnie Scotland now take note of this date as it doesn't happen very often this year.

I would just like to say thank you to all of you for getting back to me and for the advice that you have given it means a lot to me and My Wife as we realise that we are not alone in this world coping with the Illness on our own ( sorry girls yes I do have a wife I had to be upfront in case you were all booking flights to come to scotland to see me :lol: I think if you saw me you would have stayed at home anyway ;)

On the subject of my wife She has been fantastic as I think a lot of the time it must be difficult for her. The diagnosis of the systemic/scleroderma has changed both our lives for ever and she constantly cares for me 24hrs a day, she cooks for me, helps me fasten buttons, puts my socks and pants on for me, dresses me, takes care of my toilet difficulties does all the chores, in fact does everything. She is also my emotional sounding off board and has had to put her own life on hold.

I think all the partners of people with any Illness deserve a medal because although it may be expected to be there for your loved one it must be very diffilcult and they need care and support as well, I count myself as a very lucky man to have such a dedicated wife but sometimes I don't want her just to be my carer but I want her her back as my wife and lover etc.

I am a very proud man who never asked anyone for help in fact people always come to me for help. Even when diagnosed I would ignore the advice to ask for help, I was in denial that I had a illness and would do it myself.

But the day has arrived now I cannot kid myself on anymore I cannot do it myself so I have to ask for help from others outside the house. It is hard to adjust to the change but I am getting there. It is demoralising for me to ask my wife to help with toilet issues. What I have realised is this when true friends and family come out of the woodwork the genuine ones are the ones who really care.

Anyway I think we should all turn to our loved ones and give them a big hug for all that they do and put up with.

I now have a decision to make as I have already mentioned its a sunny day in Scotland, do I go out in my Kilt or my usual duffle coat and gloves !!!!!!

Have a great day.

#2 Amanda Thorpe

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Posted 01 September 2009 - 12:13 PM

Hello Bobby

How right you are, it's not just the person with scleroderma that has their life changed but also their nearest and dearest. Often the attention concentrates on the person with scleroderma and the care giver can be overlooked, I have lost count of how many times people ask how I am but never my husband.

In response to this my husband has become the care givers co-ordinator for the Scleroderma Society and is hoping to connect with other care givers so they can support each other in much the same way those of us with scleroderma support each other. If you feel this may be beneficial for your wife send me a private message.

Take care.
Amanda Thorpe
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