Carer/ partner support

I think there is a real need here by the sound of it, trouble is we are all so spread out round the country it would be so difficult to organise something.  Maybe PHA could help out here, I know its a lot to ask but if everyone could meet I am sure afterwards they would keep in contact.  I know my husband would find it difficult writing on here but would find it easier face to face. It is a horrible disease and I love and appreciate everything he does for me, which is a lot!!!

Hi mel hunn .x.

Or taking the chance if anyone wants to email me im happy to give out details for my husband, i know its not the manly thing to do but he has supported me so much during this last year and getting my head round things ive been a bit selfish in forgetting that he is actually going through the same thing and prob worse as he is still working full time, has a demanding job and me to look after as well as our daughter. Its time i did something for him and got him in touch with other partners who need to talk and not sure how to take the first step, just like him xx

I feel the same for my husband we got married 1n 2007 and I was diagnosed with IPH in Dec 2009 (almost a year) he has been great he makes up my flolan at the weekends to give me a break and is really good at helping round the house. I just feel so guilty its not been the married life we expected  Its been hard finding out not to have children which was something that was important to both of us and although he doesnt say it I know it upsets him and I sometimes think that he would be better off with someone else. I worry about who will be there for him if something happens to me as his family don't really spend time with him if we didn't visit them we would never see them (his mum has only visited 2 times this last year). I think that we have also realised who our friends are and people we thought were good friends have shown their true colours!

I think my husband Joss could probably do with support from other partners too. As the shock of a PH diagnosis has died down, I think wider issues are going to raise their head for him - like the fact we now can't have children, which I know hasn't worried him too much in the past year because he's been so worried about me.

Im so glad that i found the courage to go to the weekend and then join the forum, little lights keep going on with each reply that i read, knowing that although everyones situation and journey is very personal to them, they are all very similar to others!  Mu husbands close friends have all moved around the country, the closest one being 150 miles away, at the start of this journey we had a few emergency rescues from his friends where they dropped everything to come over and collect him when he really couldnt hold it together any more and needed to talk, but as life is returning or adapting to our normal now, he has really started saying that he needs someone that understands what hes going through.  Are there regular meetings set up for carers or is it just as and when? xx

I agree with you Janey, it is a bit the same for both of us.  My husband doesnt talk to his close friends about his feelings and I dont talk to mine either as they dont want to really hear what I have to say, some dont even acknowledge that I am ill.  I talk to people on here a lot but I dont think he has been on here at all.  It would probably do them all the world of good to get together in an organised meeting which has got some structure otherwise they would just waffle to each other.  I know my husband wouldnt go unless I went as well.  I worry about mine as well. xx

I think my husband would benefit from a carers support group for PH. He has been my full time carer since I ended up in a wheelchair 12 years ago, but my PH was only diagnosed this year. Apart from meeting with Nicola and her husband, when we went to Scotland, he doesn't have anyone he can talk to about it, and his feelings. Think we all know that men try to hide their feelings because it is the "Manly" way to deal with things. He does attend a disability carers support group, run from the day centre I attend, but they are all carers of Physically Handicapped partners, I don't think anyone there cares for someone with a lung disorder.
He understands the implications of PH and knows how it can affect peole in different ways, but that it not the same as having someone to talk to who knows what the carers go through, while they are so busy being strong for us, there is no-one helping them, and asking them how they are coping.
I have suggested he looks on the website, but don't think he will!!
Hopefully we will get to a conference next year, and he will then have the opportunity to talk to others in the same position.
Margaret

Jet are these discussion groups a regular thing?

It was a discussion group held in Birmingham last Xmas. I also go to the Royal Free, is your PH secondary to something else??