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Family woes


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#1 Amanda Thorpe

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Posted 25 July 2009 - 07:03 AM

Hello All

Now let me be clear about this...I am going to complain...a lot.

Sometimes, because I live with a chronic illness I am are not able to be on my best behaviour and would hope family (*does not include husband) would bear this in mind...WRONG! Now I am not suggesting I am not responsible for my behaviour, I am, it's just at times I'm not able to have as tight a reign on it as I would like and you would think family would make allowances...WRONG!

In the talk I gave at the Scleroderma Society AGM/Conference I mentioned the fact that family (*does not include husband) don't really understand what it's like to always be ill and the emotional toll it takes on you. I think that's what you call self fulfilling prophesy.

Take care.

*Does not include husband as he is always wonderful. :D
**Yes I know it's hard for family but admitting that kinda defeats the point of this post so for the purposes of this post and in order to complain I'm ignoring that fact.
Amanda Thorpe
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#2 chockers

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Posted 25 July 2009 - 09:49 AM

Yes my famliy think I am fine. Well you look ok too me.
They don't live near me. The scleroderma overlap does not show too much. I did get asked to take my gloves off. And don't put your coat on.
They know I have Rheumatiod Arthrits but don't know I have Scleroderma .

I have givin up in saying No I can't do that.( mind you they don't live near )
I get away with it mostly.

christine

#3 shaz

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Posted 25 July 2009 - 12:11 PM

Hi, my father has systemic scleroderma.

He has five children we find it hard to cope sometimes with this disease because of the way it makes him feel and look, it just hurts sometimes when you want to give a great big hug and say it will be OK. Neither I nor my sisters or brothers live with pain every day the way he does but we all miss the father we knew and just wish we could help him find away through this heart breaking disease, but men being men will not show all their emotions, then when it gets too much for them it just comes out all at once and that to someone who is only trying to help hurts.

If I could give a medal to all scleroderma sufferers I would like anyone who has not got this can never no how much this disease takes from the person, just to be able to function from day to day and yes, as a carer it is hard, not the caring but the heart break of not being able to say or do all the right things and watching the person you love look up to, finding life so hard when they should be having the time of the lives is hard on the heart because this person gave up most of there life making sure you never went without and there were always there to pick you up when you fell down....everyone needs a little time and space to cry.

#4 Amanda Thorpe

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Posted 26 July 2009 - 09:49 AM

Hello Shaz

What an absolutely beautiful reply, your father is very blessed to have you as his daughter and no doubt to have your siblings as well. I am sorry your Dad has scleroderma and that you as a daughter have to witness the changes it brings with it.

I had hoped someone without scleroderma would reply to give the other perspective, thank you for doing so.
You are right, people need time and space to grieve what this disease takes from them whether directly or indirectly and I don't think we always give ourselves the opportunity to do so.

I said to someone recently that someone should write a book about living with scleroderma and one for living with someone who has scleroderma, no doubt both books would be eye openers.

Take care and keep posting.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)