I have cystic fibrosis, I'm 43 years old, and my husband and I are celebrating our 10th anniversary the 29th of this month. By the way, my husband is 8 years younger than me, so if anyone got the short end of the stick, he did.
We married for better or worse, in sickness and health. I went on permanent medical disability 5 years ago. My husband had thought that I would work forever, retiring when he did. I knew that wasn't going to happen, but expected to work longer than I did. It was quite the adjustment for both of us.
But we did adjust, we are still adjusting, if for no other reason than each day is different and we can't predict how it's going to turn out.
I used to think that I would die from lung involvement, if I didn't kill myself first. (I suffer from chronic depression and have been suicidal many times in my life, though much less since I married.) Then last year I was diagnosed with chronic pancreatitis after I had a reaction to an iron infusion in the doctor's office and stopped breathing. I woke up to hear someone saying, 'let's start CPR'. I shoke my head, which pretty much alerted them to the fact that I had regained conciousness. That was pretty scary and so I became convinced I was going to die from pancreatitis. We now have it controlled very well with pain management and digestive enzymes. I am no longer so scared of dying from pancreatitis.
What I'm saying is, none of us knows how long we are going to live. If you love each other and talk things out, be honest with each other, seek help when it's needed, then you'll be okay. Sure, you will likely face end-of-life questions sooner than most couples, though with the Terri Schiavo thing, I think more people are giving that some thought anyway.
Being married or in a relationship with someone with CF is hard at times, very hard. If you're not willing or able to make that committment, then don't. There is a lot involved. But who's to say that you wouldn't marry someone that developed cancer and died at a young age? Who's to say that you won't die in a car accident on the way home tomorrow? None of us knows how long we have, but many of us with CF have a greater appreciation for today because we know how precious it is.
I'm saying this as much for me as for you. I often think myself unworthy of such a wonderful husband, of the wonderful things we've been able to do, of the time we have together. These last 10 years have been the best of my life. And I think my husband feels the same way, in spite of all that is me: the Vest, nebulizers, hospitalizations, home IV antibiotics, high drug costs, nighttime oxygen, Restless Leg Syndrome, pancreatitis, chronic depression, and just generalized grumpiness from time to time. <laugh> I'm entitled to be grumpy every now and then. Heck, everyone is.
Look inside your heart, pray about it. If it's meant to be, it will work out just how it's supposed to. I wish you well. Please feel free to ask me any questions you want or make any comments.
i just wanted to say that your response really stood out to me. I am a 22/f with cf currently in the most serious relationship that I have ever been in and lately I have been so depressed thinking that what is I am going to die young, and why should my bf stay with me if he knows what could happen in the future, but what you said really made sense to me so thanks.
I believe in dragons, good men, and other fantasy creatures.
Not one shred of evidence supports the notion that life is serious.
I joined this site because I am in need of support of other CF people and supporters. My boyfriend/fiancee' of a year and a half recently broke up and I have been on Auto-pilot the last three months without really realizing it. I just came out of the fog and I have realized what I've lost to CF. A great love in my life. Steve has struggled in our relationship because I have always wanted to be married and have children. Because of the CF, Steve has not wanted these things. I know at one time in our relationship he tried to believe, he loved me that much, that we were engaged until he said to me about the feelings of marriage and children with him have not gone away and will never go away. I struggled with that and I finally prayed. I wanted him in my life and I love him so much that I went back to him and said that I have to marry you for you not because I want to be married and have children. With that our relationship continued pretty good, of course with the ups and downs that CF health brings and we were good until he moved out of his parents place. A 30 yr old who has lived in a very closely connected world and has not ventured out. Always fearing the worst I suppose and with all due respect I don't have a Chronic illness to say how he is to feel and how he is to live his life, but after a year and more I was shocked that he didn't give me a key to his place. and from there.... our relationship struggled even more. and he got sucked into this depression once again that as long as I am with him I will never have what I want and he can't let our relationship cont. and I along the same line felt some resentment building and I love him too much to and so we both said we can't do this anymore.... and now I'm realizing that I want to be that person that he needs and now it's too late. How do you male CFers feel about the future, marriage, kids and etc...?????? tell me how I should react?
Hi Kim R,
This is Kim K again...Thanks for the response..I think its great that you are married to a guy with cf, it gives me hope, since my mom doesnt think it can ever happen because of my bf's cf, but I hope it can happen for us too...He is on vacation now, but is coming back on Friday I didnt think I would miss him as much as I did for 2 weeks lol We met 4 years ago on a road test when he had a gf and I had a bf, but after our relationships ended, we started talking more and now have been a couple for almost 3 months now, and I havent been happier with a guy than I am with him, which of course my mom doesnt understand...She is in denial about us as a couple, and basically he doesnt exist to her, because she wont even get to know him, which I always tell her is her loss, because he is such a wonderful person, unfortunately she only sees his cf and insists he wont be able to hold any kind of job He got a lung infection from the flu in December, so he was forced to resign from a job he really liked...He hopes to get into some kind of job when he comes back from vacation..Him and I are hanging in there though, through the rough times lately, especially when my mom threatens to throw me out if I keep seeing him...She says if I "choose" him and not her, that I have to leave..I love them both, so I'm hanging tough for now, because I think its worth it, plus there are options for having children and financial support...I realize I may be the bigger breadwinner,with me becoming a pharmacist this May, but I know he will contribute with what he can...Any advice you have on this situation would be great...Thanks
Hang in there. Your mom likely won't disown you. She just wants the best for you, I'm sure. That or she's like my mom and can't bear to see her kids grow up. I'm sure she just wants you to have a normal life. Which isn't what you will get if you marry someone with CF. You won't get normal, but you won't get dull and boring either! <lol>
But what my husband has reminded me of many times is that you could marry someone that is perfectly healthy and lose them to a car accident early on or lose them to some other disease. Basically, it's a crapshoot. We're all going to die; some of us sooner than others. That's just how life is. It's just that most of us with CF are going to die from CF. Sad but true. That doesn't mean we can't have productive, even normal lives. That doesn't mean we can't get married and have the same ups and downs as normal people. We can! And we do. Of course, not all of us choose to have children, but not all married couples choose to have kids either.
And what my husband says to me when I ask him why he stays married to me is, "I love you". I can't imagine, if the situation were reversed, marrying someone with a chronic disease, but then again, I don't know what it's like to not have a chronic disease. I'd like to think I would marry the person I loved, illness or not. We're not second class citizens, unless we're women (semi-kidding there, but that's for another forum), we're people, people that have dreams and desires, people that fall in love and out of love just like everyone else. If anything, I think people with CF have a better understanding of what it means to live life a day at a time and make the most of it, enjoying whatever we can, when and where we can.
Hang in there.
Post Edited (Darkies Gem) : 2/16/2007 2:36:07 AM (GMT-7)