Carer/ partner support

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   Hi nutty,
You should not feel bad about having a moan, everyone is entitled to one.  My husband is my carer and really I know he finds it hard.  As he says the disease is not just mine but ours.  Our lives changed so much when I was diagnosed with i.p.h. fifteen months ago and he dare hardly leave me on my own.  On the odd times he has had to leave me I tend to end up i the hospital!!!!  At least when I am their he does not worry too much as he knows the care I get is second to none.

Everyones lives change who is connected with this disease, it affects every part of every day life and living.  The hopes and dreams we all have for the future are dashed and we have to build different dreams and we all then have different expectations about our future lives.  

You may feel alone but there are carers out there with the exact same worries that you have.

We live in Halifax, do not know if it is too far for you to come over or maybe we could meet half way so that the two of you guys could talk.  Everyone needs somebody..

We are away till the beginning of December but please keep in touch, you are not on your own.

Love Carole

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Carole Members Profile Send Private Message Find Members Posts Add to Buddy List Member Joined: 26 Aug 2011 Location: Halifax Points: 459	Post Options Post Reply Quote Carole Thanks(0) Quote Reply Posted: 17 Nov 2011 at 2:55am
	Hi nutty, You should not feel bad about having a moan, everyone is entitled to one. My husband is my carer and really I know he finds it hard. As he says the disease is not just mine but ours. Our lives changed so much when I was diagnosed with i.p.h. fifteen months ago and he dare hardly leave me on my own. On the odd times he has had to leave me I tend to end up i the hospital!!!! At least when I am their he does not worry too much as he knows the care I get is second to none. Everyones lives change who is connected with this disease, it affects every part of every day life and living. The hopes and dreams we all have for the future are dashed and we have to build different dreams and we all then have different expectations about our future lives. You may feel alone but there are carers out there with the exact same worries that you have. We live in Halifax, do not know if it is too far for you to come over or maybe we could meet half way so that the two of you guys could talk. Everyone needs somebody.. We are away till the beginning of December but please keep in touch, you are not on your own. Love Carole
	CA

staciep90 Members Profile Send Private Message Find Members Posts Visit Members Homepage Add to Buddy List Member Joined: 22 Apr 2011 Location: Swindon Points: 171	Post Options Post Reply Quote staciep90 Thanks(0) Quote Reply Posted: 17 Nov 2011 at 3:17pm
	Hiya, I can't believe I've only just found this post, where've I been LOL :-) Although I'm not a carer I kind of feel I know where your coming from, as a patient I felt really alone especially when I was a first diagnosed. I was only 1 of 22 children that GOSH were treating at the time so throughout my teensage years I never felt I could truley relate to anybody. But now I feel overwhelmed by the amount of people there are for me to talk to about it if I need to even though there aren't that many of us it's alot more than there was. Although don't get me wrong I would gladly be the only person with this disease if it meant no-one else had to have it. But although I've had what I consider a wonderful upbringing even though I've been ill my entire life, I have at times wondered how hard it's been for my parents bringing up a daughter who is sooo ill when they have two other perfectly healthy children, (for my dad 5 other perfectly healthy children LOL) I think though it is made easier by the fact that they have each other and having other "normal" children made it easier I've never felt abnormal just a bit different sometimes. It's only now with the whole transplant I feel abit abnormal, my friends got to go to Uni, get to get jobs, move out etc all the things you do when you get older while I stay where I am. Although I do have Hope and thats why I'm trying to get my degree and become a teacher when I hopefully get my transplant. I really do think there should be more support groups for all carers be it husband, wife or parents even siblings because I think the person it hits hardest in my family is my twin sister because she's not just my sister she's my best friend and if something happened to me I'm sure it would be like losing a limb and know thats what it would be like for me if something happened to her so I think there should be something available for the people who are close to us :-D Wishing you all, all of the best Stacie x.
	Life is worth the fight :o)

margwxs Members Profile Send Private Message Find Members Posts Add to Buddy List Member Joined: 21 Oct 2010 Location: Cornwall UK Points: 237	Post Options Post Reply Quote margwxs Thanks(0) Quote Reply Posted: 19 Nov 2011 at 6:45pm
	Hi Stacy Am so glad to see another sufferer of PH posting on here. I know our carers have a difficult, and somewhat scary time looking after us, and I also think that sometimes, we selfishly forget just how our PH affects them!! They never seem to voice their worries about us, prefering to keep "Stiff upper lip" but they too need support. How many sufferers have their carers come to the site??? Not many!! We know that we the sufferers can always contact friends on here who we know understand our fears and will help us through their personal knowledge and experience. I know my husband bottles things up, and won't express any fears he has, to me. If I ask his opinion on a decision I have to make medically, he always says it's up to me what I decide!! Grrrr Sometimes I wish he would unload and express his fears, but then having been married to him for so long, I know very well that he won't. I hope one day to persuade him to come to the conference, so he can meet other carers. He has met other sufferers, through me, but never had a chance to talk alone to other carers. Stacy - I hope it will not be too long before you get your transplant, and then get the chance to experience "normal life" and do all the things that others in your age group take for granted. I think you are extremely brave facing up to the transplant but know how much it must mean to you. I really admire all carers as their role is one that no-one would want, but they do it because of their love for us. Margaret
	Music makes the world go round