How Do I Get Through?

[ANonnieMouse]

Hello everyone. My name is Michael and I am the 18 year old boyfriend of a 20 year old CFer. Although we have only been dating for 9 months now, I have been chasing her for the better part of the past 8 years (yeah, that's right, I was 10), and I can honestly say that I have never been happier in a relationship. She is my fairy tale princess come to life (I apologise for the cheesiness). Dispite my young age, I can confidently say that I am truely in love with this woman and that she loves me back just the same, but of course that is not to say that we dont have our fair share of problems. Most of these we can successfully work our way through, but there is one that continues to come up with which I do not know what to do. Every so often, she goes of on a "why would you waste your time on a dying chick" tangent which, i suppose, is understandable. But try as I might to assure her that there is no other way i would rather spend my time than with her, that I would happily take care of her in anyway I could if it meant that I could be with her, she never seems to believe me or grasp what im saying. She simply doesnt seem to comprehend the depths of my love and devotion. This does not anger me, but deeply saddens me (sometimes to the point of frustration). All I want is for her to understand that I mean what I say. She says she should leave me and in turn save me from the supposed hell that I am setting myself up for, but I dont want to be saved. I would gladly stroll with her through hell and back again, I just dont know how to let her know that. Any help of any form would be emmensly appriciated. Thanks.

 

[kybert]

i can understand why shes saying those things. my partner was like you in the beginning. now he gives me the impression that im just a burden. me - 'can you get me some painkillers my tummy is hurting REALLY bad!!' him - 'oh cant you get it yourself? im busy playing a computer game' me - 'help i cant stop throwing up im coughing too hard, my throat is burning i need a drink!' him - 'get it yourself or hold it in, im busy'. he had very good intentions in the beginning, when i was in good shape, but now his patience is wearing thin. thats not to say all people are like that though, you might be a very sincere, good person who WILL be there for her. but the fact that there are people out there who start with good intentions, then just cant be bothered, makes us wary. besides they are only human. only advice is convince her to stay with you and see what happens. if you find yourself beginning to ignore her needs then you will need to address that somehow.

 

[ANonnieMouse]

Personally, I do not think I am capable of ignoring her in any way, never mind her needs. And what I have are not intentions, but convictions and devotions. In your case, however, it sounds like your partner would benifit from a cranial bludgeoning with a fire extinguisher, if you dont mind me saying.

 

[kybert]

keep drumming that into her head then. she will soon get the picture that youre there for her. lol you are quite welcome to do that!

 

[anonymous]

i know where you are coming from too. my girl does the same things as yours sometimes, but dont let it discourage you. if ya love her then ya got to stick it through. not everyday is a fairytale. me and mine have days where nothing can touch us and we sre hsppier than anything and then there are the days i can get frustrated over some of the stuff she says. i think alot of it has to do with the drugs they are put on. i know i would be a little bit moody if i had to go on as many drugs as i see my g/f swallow. but just let her know how you feel thats all you can do and things should fall into place if they are meant to. what i told my g/f is i would rather be able to spend 5 minute with her than no time at all. keep your head up and best of luck to ya, josh

 

[anonymous]

You know, another really big thing is, that because we as cf ppl look "normal" whats going on inside our bodies is something that no one can see nor understand or feel. and we really wouldnt wish it on anyone else either!!A lot of the pills can play with your emotions, but a lot of it has to do with you mostly feel like crap almost all the time, and partners , friends family do tend to overlook it because it becomes the norm for you to feel like crap, its kinda like " what else is new" attitude starts to take place.Or because you have to have that brave face on all the time, ppl tend to think that you arent really feeling what your feeling because you sheild your pain and fear from them. its like conditioning, and programming, its hard to let ppl in all the way, because you need the barrier to protect you from being hurt, and you cant tell who is going to hurt you until it happens, and it does happen, some ppl just cant handle the fact that your sick. And I think every CF has a barrier thats been put in place, because from such a young age we see so much, we see our friends die, and suffer and at the same time we have to accept it, and not show how much it really does chew away at you.and in most cases the minute you are having a bad day and expressing your fears or your upset, or just having a bad day, ppl will run for miles, no one likes someone thats complaining, or whinging, and the simple fact is, thats exactly the way ppl view it if you are upset about your situation, ppl just automatically think you should be happy with what you have, and complain, but just do it in silence, or to someone else, but theres no one else really, except another cfer to know what its like, what its like to live with day to day.I dont believe dwell and things, or scream at the injustice of it all, but it cant be denied either, and just having someone to love you and support you wholeheartedly is sometimes enough to get you through a bad daywe're strong because we have to be, and sometimes the way we are is what keeps us alive, and keeps us fighting.We all want to spare ppl the pain of getting involved with us, because we know first hand what its like, and what we have seen.Your g/f just needs to know you love her, and support her, but it probably wont stop her trying to push you away, its just a built in mechanism we all got given, and maybe part of it is because its a way of hurting you, so that you can hurt just like she does but in a different manner. I only know what I am like, and I do the exact same, as do all the cfs I know, but what we show on the outside isnt what we feel on the inside.hope some of this makes sense, just love and support her.~~Tracy cfer 30 15 months post tx~~

 

[anonymous]

Hello 18 year old,Tell you fiance my story maybe it will help. I met my fiance when I was 21 and we had only been dating a couple of months when I found out that I had CF (that's right I was not diagnosed until I was 22). Most women probably would have got all freaked out and split, but she didn't. I remeber when the test came back positive and I told that because we had only been together for a couple of months that if she wanted to end the relationship I would understand. Intead she took the time to come with me to the doctors asked questions about my life expectancy and things like that. Because I was diagnosed later in my life my CF is not as sever as most people, Although my lung capacity has dropped I try to stay healthy with regular exercise. But the point is, somehow she knew that only after a couple months of dating that I was the one for her. We have been togther for 9 years and we are getting married this August. Hopefully your fiance will read this and understand how lucky she is that she has someone who is willing to stay with her no matter what happens. Any other guy probably would have left a long time ago.Dave 29 w/cf

 

[AbsintheSorrow]

A lot of us have this problem. I tend to do that with my boyfriends too. And it's certainly not intended to upset. It's just kind of a warning, or a wall like Tracy said. However, this particular girl sounds very lucky. Chasing her for 8 years? And you seem very dedicated. But anyhow, just keep drumming it into her head, I agree with that. I don't necessarily agree that she may do it forever. I'd bet she doesn't really want to keep doing it. It's just a defense mechanism. Like with Kylie, I'm sure her boyfriend was originally much more supportive, so if she's kept up a wall, it's obviously now serving its purpose with his getting lazy. Maybe if you stay true to your word, and keep supporting her, she'll take down that wall slowly, brick by brick. Good luck!

 

[anonymous]

I'd really like to hear more from the boyfriends (and girlfriends too) of CFers. Sometimes I forget that my boyfriend has to deal with this too. Debbie23 w/ CF

 

[kybert]

ive never put up a wall. i welcomed his interest in cf. i never actually once thought about the 'why is he bothering' thing. he has a lazy personality and everything, whether to do with cf or not, is like a chore to him. when i was well he found things easy, never had to do much, but now there are one too many things to help me with. he prefers to play computer games. lol

 

[anonymous]

Wow. I am so relieved to hear everyone here has gone through this - I constantly told my fiance (now husband) that I should just leave him so he could go on and lead a happy life, that it wasn't fair of me to make him face a life of heart ache and misery just because I was too selfish and fell in love. Even after we got married I told him I should divorce him because he was young and had his whole life ahead of him and could be so much happier with a healthy woman. He always told me what all of you have heard - I'd rather have you for one minute than not at all.Here is what stopped me in my tracks, and may make a good argument for you to your girlfriend. I realized that if the tables were turned, and he had a terrible illness - I still wouldn't have thought twice about marrying him. I also realized that by me saying he would be better off without me because I was sick made it sound like - if tables were turned and he was sick - that I would think I was better off without him.I hope this makes sense - in my head it does but I'm sleepy right now and having a little difficulty writing out my thoughts <img src="i/expressions/face-icon-small-smile.gif" border="0">Piper

 

[anonymous]

Hello, my name is Kristy and I've been married to a wonderful 29 year old with Cf for almost five years. We have been together for 8 years and up until this past month I've been able to deal with everything ok. I found out he had CF after about a year of dating when I saw a medicine bottle at his house. I went online and researched what the drug was for and that's when I knew. I immediately called my aunt who coincidentally works as a nurse at a CF center part time and she told me all about the disease. He has been in good health and never had iv treatments or anything until the past 4 years. He's currently in the hospital now and has been for 2 weeks & it looks like he'll be in there for at least another week. I just don't know how much more I can take emotionally. He tells me all the time that we should divorce so I can live a normal life with someone who isn't sick and can support me, but I just can't bear to leave. I get mad at him because when he's in the hospital he's not getting a paycheck and I don't want to lose our home and everything we've worked so hard for. I feel like such a bad person for feeling this way. Now he's talking about going on disability which wouldn't pay even half of our bills. I love him, but I just don't know how much more I can take and still be a good wife.

 

[anonymous]

I do not know what you are going through, but I have a feeling I know kinda how your hubby feels. I know he does not want to be in the hospital and would rather be bringing home a pay check. I also know he does not want to be a burden on you (he even suggests divorce so YOU can be happier) I am sure it is very hard on you, but you have to look at the whole picture. You need to ask yourself some questions...what is more important your husbands health or your house and a comfortable way of living? I am sure you would rather have both, your hubbys health and a comfortable way of living, but I doubt that is possible because if he doesnt go to the hospital he can not get well. Are you willing to support him even if his health gets worse as it most likely will? After reading your post my heart broke because as a CFer I would not want to ever ever ever be a burden on someone I love more than anything else in the world. I have no idea how hard it must be to love us CFers, but I do know that all marriages have difficulties and it just comes down to whether or not you can accept the difficulties you have been given. I hope that everything works out for you one way or another...

 

[anonymous]

I am the last person who posted and I just reread my post and it sounds kinda harsh. I hope i did not offend you...that was not my intention. I just think as a CFer I feel that my spouse may say that about me in the future and I pray to God he never feels that way...I think i was just putting myself in your hubbies shoes and maybe my words came out more harsh than i wanted them to.

 

[anonymous]

No, you didn't sound harsh. I feel horrible for feeling this way. I sound like all I care about is our financial situation but it's not just that. I would love more than anything for him to be healthy. It just makes it even harder when he's telling ME that the best thing for me to do would be to leave him. It just keeps getting harder everyday for me to hide his illness. I mean, there are only a few people that know he's sick and I'm tired of lying for him. I slipped up last night in front of my friend and he was furious with me. I was talking to him on the phone and didn't think anything of it when I asked what nurse he had for the night. My friend was sitting next to me but wasn't paying attention and he knew she was with me and he got so mad. He apologized a few hours later after I assured him that she didn't hear. I'm sorry if I sound insensitive.

 

[souixem2]

Hi there my name is clarke im 33 years old with cf and i have had a double lung transplant. I think he needs to let people know whats going on with him so they can help. I tell everybody whats going with me at all times and it helps.

 

[AbsintheSorrow]

You don't sound harsh. If I were you I'd be worrying about the same things, I imagine. However, just think how your husband most likely feels. He probably feels useless and like he's weighing you down, and being a bother. He knows he's not doing well, and (mind you, this is all an assumption, me saying how I would feel if I was there) I'm sure he wishes he could be doing more for you. But at the same time, he's really the one that needs support now. I don't know what I'm saying entirely, except that it must be stressful to be you right now. I can only imagine as of yet. But it also sucks to be your husband, and he needs your support. Because not only is he not doing too great, but he probably feels he's being a "burden" to you, and that's a really tough feeling. I'm still in pretty good health, and I feel like a burden. I can only guess what he feels right now. And just an afterthought... why is it so important to him for people not to know? I really don't understand that in CFers. Who gives a damn if people know you're sick? If you're afraid people will treat you differently... and you are friends with people that would treat you differently if they knew you were sick.. Do you really want to be friends with them anyway? Just something to think about.

 

[anonymous]

I don't understand why he must keep his condition a secret either. It's not like he's in high school and is afraid of being made fun of. We are adults and all our friends are too. He doesn't like to talk about it with me and didn't up until the past few years. He hates it when he's in the hospital and all the other cf patients only talk about their health, so he just stays in his room the entire time. I think he feels out of place because (in his words) he doesn't LOOK sick. I don't know, I can't figure him out. Is anyone else secretive about this???

 

[anonymous]

It's a way to avoid facing the disease and a way to feel normal. By not talking to other CFers about it, he can trick himself into thinking he isn't a part of the CF community - he doesn't want to share talking about symptoms because he doesn't want to think that he has anything in common with a CFer. Not telling other people is a way of fitting in and not having a permanent red flag over his head that he's different. Also, CF isn't wildly known so he may fear that when he tells someone, they may think he is contagious.Piper

 

[anonymous]

You say you don't know how much YOU can take? What about him??? That's what is wrong with society today!! " MONEY " Does know one know how to just LOVE does it all have to be about material things? Do you really Love him? It sounds like if he don't work you don't want him!! Didn't he work before getting sick? Would't he work now if he could? Don't you think he feels horrible he can't be the man he use to be, what if something happened to you , like for example a car wreck, you no longer can walk how would you feel if he left you because you couln't work? That statement really upset me ! I would live in a card board box, and cherish every day that we had together. You married for worse, or poorer didn't you?<img src="i/expressions/face-icon-small-confused.gif" border="0">