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Carer/ partner support

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margwxs View Drop Down
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Joined: 21 Oct 2010
Location: Cornwall UK
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    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
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staciep90 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote staciep90 Quote  Post ReplyReply Direct Link To This Post 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)
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Carole View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carole Quote  Post ReplyReply Direct Link To This Post 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
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Annie** View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie** Quote  Post ReplyReply Direct Link To This Post Posted: 28 Apr 2011 at 8:45pm
I think that it is wonderful that you have opened up here.  More people should open up as to how they are feeling, it certainly does help.  I have IPAH and worry about the effect of my two daughters because they dont say anything to me about how they feel. 
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Karen View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Karen Quote  Post ReplyReply Direct Link To This Post Posted: 20 Nov 2010 at 10:19pm
Great news too hear your partner coming home from hospital. Take care and hope all goes well. Karen Hug
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jet View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jet Quote  Post ReplyReply Direct Link To This Post Posted: 20 Nov 2010 at 8:41pm
Great News Llaria. You take care of yourself too and make sure you have some 'YOU' time xxx
Had Lupus for at least 27 years diagnosed with secondary PH in 2006
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kadymd Quote  Post ReplyReply Direct Link To This Post Posted: 20 Nov 2010 at 4:05pm
Hi Ilaria
 
I am so pleased that Mark is well on the mend and being discharged. He will feel so much better at home even if all he can do is sit and rest. that is all i did when i first came home, good luck and take care
kady
it takes more muscles to frown than it does to smile so keep smiling
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Ilaria View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ilaria Quote  Post ReplyReply Direct Link To This Post Posted: 20 Nov 2010 at 11:09am
Hi Mel, so glad reading the posts helped you to get a smile on your face!
One thing has helped me lately was when I was reading about "how to develop sense of humour": it said to ask oneself "what's funny in this situation?" even when it's the worst possible situation...so, that is really hard but I tried it while Mark was in Critical Care and I managed to laugh at myself...
I wish you can find the funny side of life sometimes and also the time to look after yourself and replenish your energies...that in turn will make your wife happy and give her more energy.
 
Mark will be discharged today and as much as I am looking forward to it I also know that frustrating times are coming...nevertheless I am so so grateful that he is still alive...
 
Thank you all again and best of luck to everyone, xxx 
 
Trust the process, don't push the river
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nutty68 Quote  Post ReplyReply Direct Link To This Post Posted: 18 Nov 2010 at 1:09pm
Hi All

   Just reading all the posts again which some accounts from carers sound's close to home. and it puts a smile on my face with all the kind works people have put! Smile

   Its just a shame we can not take all the kind words and best wishes and put it on prescription and take 3 times Daily.

     
Melvyn. Husband of Naomi (Charm) who has (CTEPH) with residual disease post Thromboendarterectomy.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kathryn Quote  Post ReplyReply Direct Link To This Post Posted: 17 Nov 2010 at 8:59pm
Ilaria, hope Mark keeps improving, thinking of you both, Kathrynx
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kadymd Quote  Post ReplyReply Direct Link To This Post Posted: 17 Nov 2010 at 5:08pm
Hi Illaria
 
So pleased to hear that Mark is now on Mallard. He will get stronger every day but bear with it having had the PTE i know that recovery can be slow and frustrating but it is worth it so hang on in there. Won't be long before he is home and slowly progressing but it does take a lot of time
take care Kady
it takes more muscles to frown than it does to smile so keep smiling
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisa .x. Quote  Post ReplyReply Direct Link To This Post Posted: 16 Nov 2010 at 11:10pm
Hi Illaria hunn 

         Hug,  good im soooo glad i made you laugh , and yeah its true miracles CAN and DO happen .x.
  luv and hugs .x
                      lisa .x.


lisa .x.
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Ilaria View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ilaria Quote  Post ReplyReply Direct Link To This Post Posted: 16 Nov 2010 at 11:07pm

LOL Thank you so much everyone, every day is a surprise and I feel grateful and thankful to nature for what feels like a miracle.

Lisa, your message made me laugh...and it has already started today..."darling, can you pass me some water please.." and I ended up giving him a foot-massage....but i think after such an experience I cant take anything for granted and I am really appreciating being alive.

Much love to everyone, xxx 
Trust the process, don't push the river
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisa .x. Quote  Post ReplyReply Direct Link To This Post Posted: 16 Nov 2010 at 3:38pm
Hi Illaria hunn ,

   well that's wonderful news .x.    Positive mind and thoughts now hunn  , and b-4 you know he'll be home with  "" Illaria pass me this"",  and a "" Illaria pass me that ""   Wacko  , you wont know if your comming or going ay hunn ,  haha  youll wish he was back in that hospital bed LOL .

      Be strong hunn .x.
                             lisa .x.
lisa .x.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jet Quote  Post ReplyReply Direct Link To This Post Posted: 16 Nov 2010 at 2:01pm
Brilliant news, hope he continues to improve, thinking of you both xxx
Had Lupus for at least 27 years diagnosed with secondary PH in 2006
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Karen Quote  Post ReplyReply Direct Link To This Post Posted: 16 Nov 2010 at 12:40pm
Hi Illaria
That is such good news to hear. Glad you are feeling better too. xxHug
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rita Quote  Post ReplyReply Direct Link To This Post Posted: 16 Nov 2010 at 11:29am
That is great news Ilaria give Mark all our best wishes
                                                                                Rita xx
To receive a smile give one away
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Aleksandr Quote  Post ReplyReply Direct Link To This Post Posted: 16 Nov 2010 at 10:47am
Pleased to hear that he's off CCU and on Mallard  Smile
Simples!
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Ilaria View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ilaria Quote  Post ReplyReply Direct Link To This Post Posted: 16 Nov 2010 at 10:26am
Dear All,
thank you so much, all your messages really touched my heart, THANK YOU.
Good news: yesterday when I asked to visit Mark in Critical care I was told "He s back on the ward" and I could not believe what I heard...such a relief...he is still so so so weak, but thank god, he doing well. I will keep meditating, for Mark and for everyone else going through this. by the way, I have been raising some money, which I will donate to PHA. 
Much love to everyone and hugs back to you all, my thoughts are for everyone who has to be strong and brave
xxx Ilaria
Trust the process, don't push the river
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisa .x. Quote  Post ReplyReply Direct Link To This Post Posted: 15 Nov 2010 at 6:13pm
 Hi hunns
 Illaria    i also am sending you BIG HUGS , and all my strength .x. 
 Mell hope your feeling a little higher this week hunn .x. hugs to you also .x.

 Will be praying for you too hunnys x.x.x
 take care 
            lisa .x.
lisa .x.
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