From a CF perspective, I can understand your worries. I honestly expected my husband to realise what being with me actually meant, and to run away screaming. I guess I still expect that, especially everytime I find out that my health has stepped down another notch.
You should not rush into this, and should not get married, until you're sure that you can cope with what CF might bring. It would be awful for you to get married, and then feel trapped later on when you figure out it's actually more than you can cope with. If your bf is doing well, he may have many more well years ahead of him. However CF is unpredictable. As lovable as us CF patients are, we're generally an understanding bunch.
Oh, and never listen to friends about
these matters, especially if they aren't or have never been in this siuation. They will never understand the way you will feel. I think people react differently to things.
My friend Sami had been married 2 years when she died. Her husband was their right until the end, and though he was hurting, he still adored Sami and stuck by her right till the end.
I can never understand what being the partner of a chronically ill person must be like though.
There's a website called www.cftrust.org.uk there is a forum there especially for Partners of CF patients. I'm sure that there will be a lot of people going through the things you're worried about
. One specific poster-Adam_Harris is going through this, and he has a very straight post about
how all this is feeling to him. Even though it is a UK based site, anyone can post from anywhere. If you can't get the answers to this question on here, then it might be worth checking out this other forum to see how others are dealing with this.
Of course we will always be here for anything you may need to ask/know about
, or just generally for support
Gem
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio. Had a Port-a-cath fitted on chest wall since Nov 04
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Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.I'm from the UK!!!!! If anything I say makes no sense to you, let me know so I know how not to be so English.
MouseGirl
Regular Member
Joined : Oct 2009
Posts : 38
Posted 10/14/2009 9:32 AM (GMT -7)
Thank you. I will definitely check out that site. =]
Em :]
"Let the whole wide world crumble, so long as I can read another page. And then another after that. And then a hundred more."
MouseGirl
Regular Member
Joined : Oct 2009
Posts : 38
Posted 10/15/2009 10:18 AM (GMT -7)
I did look at that site and am currently registering to post on it. I think it will help a lot. Thank you so much for referring it!
Em :]
"Let the whole wide world crumble, so long as I can read another page. And then another after that. And then a hundred more."
Currently it is Saturday, December 15, 2018 2:45 PM (GMT -7)
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