Saturday, February 27, 2010

Bad, bad thoughts

I know this is something that we adult CFers struggle with a lot.  Many of us seem to have overcome it, yet many of us still struggle with it on a daily basis.  What is it that I am talking about?

Letting someone important into our CF world.

And by important I mean someone we love and want to spend the rest of our lives with.  Someone we want to share all of our secrets and heartaches with.  Someone whose shoulder you want to cry on and whose hand you want to hold.

That special someone.

This has been a very hard thing for me to do.  It is turning out to still be very difficult for me to do.  And given the man I am dating, it should be easy.  But it is not.  It is harder than I thought it would be.  Granted I have overcome some of my own obstacles like vesting in front of him and wearing oxygen during "ahem".  But these are only the superficial areas of CF.

There are so many more things that I need to let him into.  Like when I am in pain (which is way more than I like these days), when I am having one of those bad CF days, going to the doctor with me and just talking about CF stuff.  We do live together so it's not like I can really hide anything physical, but the inside things, I can hide those like a champ.

You are probably wondering why this should be easy because of who I am dating.  So for all of you who do not know, I am dating the brother of a close friend of mine, whose husband had a double lung transplant Thanksgiving day of 2008.  The hubby and my man are also very close friends, and he is a big part of the support team.  So obviously he knows what to expect in a way.  All CF cases are different I know, but there are still so many similarities.

And while I am at it, it also has me thinking that I want to stop him from having to deal with anything that I will go through in the future.  I know he can handle it, I have total faith in that, and he has a sister who has dealt with it all too so he has a support system.  But that is no consolation to me at all.  And it should be.  I should be ecstatic that after all these years of dating assholes who couldn't and didn't want to deal, I have found someone who can and will.

So why can't I be happy for myself?  Why can't I stop thinking that I should tell him to go away and not to worry about me?  Why do I stay?

Well I stay for purely selfish reasons because I love him more than anything and can't imagine life without him. But this love is blinding me, and making me want to protect him.  He has met me at a time in my life where I am not really ME.  I am a dumbed down, less active version of the person I once was.  Will he still love me when I am transplanted and can do all of those fun activities again?  And why must I think about all of this now when I have not even started the evaluation process?

If you didn't think I was crazy before, now you are well aware of it.  I am a looney waiting for the straight jacket and people in white coats to take me away.


  1. I don't think you're looney, I have the same thoughts and I'm sure people who have LESS problems (physically, mentally, and emotionally) than us think they same thing. I have been with my BF for 5 yrs and I am just barely comfortable nebbing in front of him, if any one of his friends show up the machine goes off! haha. I'm happy that you have found someone you love : )

  2. I think all these thoughts are natural and wow some of those superficial things (even tho I don't think they are superficial) are a BIG deal! O2 during ahem wow! You are brave! Keep on keeping on Ame You deserve all the happiness in the world... so brick by brick break down that wall... And trust me I know this is easier said than done :)


  3. I met a guy in 2003 and fell madly in love with him. I had never heard of CF until meeting him. I gradually over the years learned more and more about CF, and how he was effected by it day after day. I was there when he got his double lung/pancreas transplant. Not one day went by that I thought about leaving him b/c he had CF. Not one day has ever gone by that I wish I had never met him. I promise you that is how your b/f feels. You deserve to be happy in life and love. Like you said you had dated a lot of immature jerks prior to this guy. He wouldn't be with you if he didn't love you and want to support you in everything that comes your way with having CF. I think the opening up part will come over time. Don't think you need to spill all your guts to him. I truly believe that people living with CF are some of the most amazing people, and its us that are the blessed ones for having you in our lives.

  4. You are not staying for purely selfish reasons. You are staying because you BOTH love each other, and would both be devastated to lose each other. I think it would be selfish if you left for the reasons listed above. Embrace that love and live each day to the fullest. He knows what is most likely to be ahead of him regarding your illness, and he obviously loves you very very much. I did struggle with this some when Jason and I were dating, but I know that had I left for these reasons, he would have been crushed. He loves me very much and even though being a caregiver can be stressful, there is still no other joy than caring for the one you love when they need it. You are both so lucky to have one another!!!!!!!

  5. Amy, I completely understand.
    I actually left my husband in October for a lot of reasons, but the most important one being that he couldn't handle CF. There was no communication, the love just went away replaced by fear and resentment and CF is not going to go away. In reality our marriage was over 2 years ago.
    I now know that not everyone can handle us and this disease, BUT I also know that there are people out there that can. They see something inside you and it doesn't matter what you have or how scary it might be/can get; the will be there. I've seen it. A friend of mine with Cf has a great husband who never waivers during the tough times and (for me) most importantly they discuss what's happening. They share the fear, pain and hope.
    I'm recently begun dating and have met someone who has blown me away. He wants to know everyhing about CF and get this...he's not scared. It's surreal, but it's happening.
    I'm going into hospital this week for a feeding tube - that doesn't scare him. He knows that I need a transplant in the near future and that doesn't scare him. I was so nervous to tell him I'm on disability - didn't bother him. It is such an insane, foreign concept to me.
    If you use msn and ever want to talk, add me: We're in very similar points in our lives; be nice to talk to someone who knows exactly (or close to that) what I'm talking about/going through.

    Jess :)

  6. Thank you all so much for the great responses :) Christy you did hit home with it being selfish to leave for those reasons. Thank you all for making me feel normal in feeling the way I do.

  7. Something you said, 'stop him from having to deal with anything that I will go through in the future,' reminds me of things that my girlfriend has said. She doesn't want me to have to deal with her CF and her transplant issues. She wants to be perfect and totally healthy and not have to think that someday she's going to leave me behind, possibly with the family that she wants to start.

    But here's the thing: That is not entirely her choice.

    She could tell me to leave. She could say that she can't handle that kind of future. She could say that she doesn't want me to get hurt.

    But I can say no. I can say that I CAN handle that kind of future. I can say that I gave her my heart and if it's going to get hurt, I'd rather it be her hurting it.

    It is my choice to stay with her. It is my choice to learn about her meds, talk to her docs, respond to her pains. It is my choice to tell myself that if she doesn't make it through today I hope it was at least a good day. (She's not sick; that's just how I approach each day.)

    Your desire to push him away isn't selfish - at least not in the way you think. In truth it's a selfless act - you want him to leave so he doesn't have to be hurt. You don't want him to see your problems not because you're embarrassed but because seeing them means he has to deal with them.

    It is, however, selfish in that it overlooks his choice to be with you. And Amy? He didn't make that choice once. He makes it every single second of every single day. Every time you wake up and he's there, he's making that choice. Every time you go to sleep, he's making that choice. It is a continual choice that he makes, and that is not something you should take away from him.

    Relax. He loves you. As you are. Stupid little annoying defective gene and all. :)

  8. Amy you're not crazy at all! What you are feeling is normal, and something that I think all of us with CF have felt and do feel still. When I first met Scott 11 years ago, I was terrified to let him in to my CF world. But the thing was, I had someone who really wanted to be in my CF world and embrace it. I think you have that too. IT's not easy to, but slowly you'll be able to let him in. We all understand and have been there. xo

  9. Thank you Bo...that really helped me a lot hearing from a partner :)

  10. It took me a long time to want to enter a serious relationship. Even to this day, I feel like I am cheating my husband out of the life he deserves. I am also reminded by him that he chose to be in this with me. He loves me CF and all. These men are hard to find so you better hang on to him. Life is so much better when you are loved so let him love you.

  11. it is probabl also the stress of the move, you know? re-starting your life up here with him, puts the focus on the long term which for us, is hard to FOCUS ON. You will get through this. I am having a bad week too, and blame it on the lack of sunshine.