CF, marriage and depression

KMV77

New member
Hey all, just need to post since I havent been here for a while. Im still hanging in there and chugging along. Just turned 35 on thursday, still with my 32% lung function and moving every day like theres no tomorrow. Anyway, recently my wife and I have noticed issues that have been around for a while and decided to do something about it. Were both not happy, and I think its mainly because of me. We went to a marriage counselor and the marriage counselor feels that I am depressed. (should I feel any different being 35 wiith a dx of CF)? I just started Kyladeco in January adndfeel better from taking that, but I guess Im not happy... I dont feel that bad but I guess it shows in my actions and the way I talk. Any help or guidance to get through this tough time in my life is appreciated.....
Kevin
 

Jeana

New member
Two things that have helped me--renewing my faith in God and having a really good friend (not my spouse) to confide in about some of the scary, discouraging, depressing parts of CF. Sometimes talking about it to your mate can be really emotionally draining, but you still need to be able to get it out.
 
W

welshwitch

Guest
Do you have a therapist for you and your depression (aside from the marriage counselor)? Also, I've heard wonders about meds to treat depression. Just a thought.

Good for you for seeking help!
 
W

welshwitch

Guest
Do you have a therapist for you and your depression (aside from the marriage counselor)? Also, I've heard wonders about meds to treat depression. Just a thought.

Good for you for seeking help!
 

nocode

New member
Like other people have suggested, I believe in therapy - talking with someone who has a neutral standpoint about you and your situation can be very helpful. It can also help you understand the areas in which you are struggling (yes, it can be CF, but what exactly about it), and that can be the first step towards feeling better.

I am going through the same and am about to start seeing a therapist. I've done this in the past and it did help.
On top of this, what I really think helps me is meditation and yoga. It's done wonders for me and my depression. Here's why - I have never accepted CF. And yet I have always identified myself as a person who has CF; that's pretty much all I see when I think about myself. When you have something that you don't accept, that will make you suffer. Meditation and yoga help me to put things in perspective; they help me to be 'the observer'; they help me to not feel so attached to the things that happen to me - both good and bad. These are also some of the principles of Buddhism.

Good luck and I hope things will get better.
 

KMV77

New member
I think the main thing is my children. I sometimes worry about leaving them without a dad due to cf. Its hard to not think about the future having children. My wifes dad died at 42 from a heartattack in 1998 and I experienced what I sometimes worry about first hand....
 
M

moxie1

Guest
As a mom of a 3 year old, and in the process of domestic infant adoption for our 2nd child, I understand your fears of not being there for your children.
However, I remind myself, that God is in charge of when I depart this earth and no amount of worrying is going to change that fact. Worrying does nothing but take the joy out of your life. I also remind myself that God loves my children even more than I do and I trust Him to do the best for them. I'm praying that I am part of that equation, but only He knows that.
 
W

welshwitch

Guest
Kevin, I think first off your thoughts are totally legit and normal. Second, I think CF throws a lot at us too and asking for help is OK. I got really sad and upset in my 20's about not being there for my kids and I don't even have kids yet <img src="i/expressions/face-icon-small-smile.gif" border="0"> Talking to someone really helped me get perspective. It's much better than trying to handle alone...otherwise your mind will take you to dark places. The mind is so powerful, which is what makes it great, but can be dangerous too.
 

Tamngia

New member
Hey there. i am not a cf client, I am on the other side of the fence. My son has CF and my husband has somany health problems its rediculous. I am only 35 and have been married for almost 13 years. We have 3 children and the youngest with CF. I can honestly tell I was depressed for a while, I wouldnt show it to my husband. I think about the what ifs, the possiblilties, and why's ALL of the time. I was never happy, it showed in my actions. Besides almost losing my husband 4 times to severe medical issues, and my son, and not finishing my schooling, and my grandmother dying and losing my job, I can't imagine why I was depressed. The more sever problem was I couldn't talk to my husband about any of it because he felt responsible. He couldn't handle it emotionally. I felt so alone. No one knows what I was going through, didn't really want to hear it and I felt like a burden to everyone. It took a long time for me to try and deal with this myself. A really long time. My husband is going to counceling and I so loved the times he went. I finally, after several years, decided to do something about it. I realized that god gace me more time with my family and I didnt want to waste it anymore. At this time my hubby and I were at odds end and divorse was always at the forefront of my thoughts, he was such a bear. But you know what, so was I. I love to be busy, and busy I was not. It took a little while to find what would make me happy. I thought of all of the reasons why I couldnt do it. I just needed a little self motivation anda lil self esteem to get me there.our relationship is rebuilding. Every day is a new blessing. Well, almost. I knew with what my situation entailed I needed to do something for me without leaving the hose, there are not that many options out there. So i started taking classes in Psychology to finish my Bachelors degree, all of which are online, and have a plan. Some days that plan is to tough, Im so tired from staying up and monitering my husband, but I love it. I finally have somethiong for me and me only. I have discovered ways to make some money at home to keep us going. Ultimatley, u need to either talk to a therapist, or someone else. But u also need to do something everyday for yourself. If it is taking courses online, let that be your 1 thing u do for you. And from my experience, talking to your wife about some things and your relationship is very important. But talking to her about other things, like details on fears you need to talk to someone else about. They can give you a better picture and nonemotional opinion and guidance. I think you do need toadopt my dads theory, which helps, and is you cant change it so why bother. I know it sounds harsh, but there is nothing you can do about it.You have a bit more than most to handle at your age and a family to think about. Enjoy something small like a movie, or jus a meal with your wife and kids. Dont forget to talk more, its easy to eliminate communication.Once you eliminate your communication, you will be more depressed. Train yourself to think its going to be a good day everyday you wake up. It will get better in time. You will still have moments, but it will over all get better.Don't forget that what you are feeling, so is your family in a way. Enjoy the simple smile, the lunch with your son or just the fact that your child is healthy for the day. You cant't control the futurebut you can control right now.
I hope this helps a little bit, you are not alone. My situation is a little different, but I can relate on more levels than you can believe. Enjoy right now.
Tammy G.
 

jamoncita

New member
A lot of people say it doesn't work for them but journaling has had an immense positive impact in dealing w my emotions related to cf. i began writing like a mad woman after my diagnosis and it was the only place i had to release my thoughts and feelings. At the time i couldn't yet talk about cf with people and even now that i can i find there is nothing better than a journal to vent to because it's hard to get people to understand. I have also worked with a few therapists before finding one i like, and that has helped to give me perspective when i need unbiased advice or when i am having a break down. Probably the biggest help is being able to release all the powerful emotions i feel without feeling judged. Thus the journal. Nothing listens better than a journal.
 

Hardak

New member
I would seek a shrink, and I know its not easy to take as much of life one day at a time as you can, even more so when you've got kids or things you want to see/do in your life time. But keeping things simple and easy for a while might be a good idea. Meds maybe useful if you've been depressed so long that you've got a chemical depression going. Little something to help you think about it.. Life with CF is like sitting at a table with a meal, we CFer's just eat much bigger meals in most cases. hang in there keep at the counseling with the marriage counselor and seek some help for your self as well.
 

ShortyT

New member
Im a 34 yrs bioracial adopted cf patient and for me life is really hard because no one really around me understands what i go through with cf. However after being depressed for about 5 years and on meds for it i got tired of taking extra meds. The first tuing i did was start walking outside the house for at least a block every day. You would be surprise how much it helps. Then every day i thought about all the good things i could do because of my cf like eating anything i wanted. I here people complain about the food they cant eat because of their health and for a minute i smile because for me i dont have that problem. However the most important thing for me is my faith in God. It helped me realize that you and i are a testimony to others that there is hope with this illness. That God would have allowed this to happen to us if we couldnt bear it with his help. Yes still there are days i have to work a little bit harder to smile but with my faith and other people support my depression is not a big problem wirh for me anymore. I hope i helped a little.
 

Radies

New member
Kevin,I think you and I havea lot in common. I will turn 35 this Friday, I have two little girls. My FEV1 is 40%. I was just sitting here in my living room watching my youngest sleeping while thinking about how horrific it would be for her if I passed away within the next 5 or 10 years (or sooner). I don't get depressed about it, but I do get worried about it. However, I can only control so much and I know that worrying about things beyond my control will not do anyone any good.
My wife told me last week that she wants us to see a counselor because she is having trouble communicating with me regarding CF. I first denied it, but after reading a lot of posts on this chat room, I discovered that I’m not being open with her. I’ve been bottling it all up to try and somehow protect her from what may happen. I can’t do that because she is in this just as deep as I am and she needs to know what’s going on. One thing my wife and I discussed today is developing a plan if something should happen and I need to stop working, and prepare for a lung transplant, god forbids, an early death. I HATE the idea of dying early, and I'm going to do everything in my power to avoid it. However, I knew going into marriage and becoming a father that this was going to be a possibility.
I see you’re starting Kalydeco, and that is great. I hope it helps you the way I hear it helping others. That will be a great help to you. Vertex is making progress in other areas, which may eventually help you more. Now is the time for us to hunker down, and work hard at fighting CF for our family. We can't give up, or let got. We must fight harder today then we've ever fought before. That’s means opening up and communicating with our spouses so they know and learn the risks and ensure we are both on the same page. Good luck fighting CF...
 

nonCFspouse

New member
Radies, I completely agree with you! I am a recent widow, my husband who was 36 years old with CF passed away in April. Faith in God is so important and building a true relationship with Him will help us all through this. Having open communication with your spouse is so important especially in our situations. On one hand we had open communication and therefore I knew exactly what my husband wanted when it came time to tell the doctors and how to handle everything after he passed. However, on the other hand he didn't have open communication with me. He was always concerned about worrying me so he didn't tell me how he was feeling or what he was thinking in regards to his health. My mind usually raced with worry when I could tell something was wrong and he wouldn't talk. In reality I probably worried more by him not talking to me than if he would have talked to me because I always thought the worst. We have two small children, 2 & 5 years old, and we all miss him like crazy. We have always been very open with both of our kids about CF and the reality of it. I am so grateful for my 5 yr olds faith! She lives and misses her daddy but she knows he is in heaven with Jesus now and he is not hurting anymore and he can breath freely! Sorry for such a sad story but that's my life right now. Please if you don't take anything else from this, just communicate with your spouses. It may be difficult because you don't want to worry them or burden them but they love you and are in this with you and just as deep as you are. Keep in mind what thy may have to endure one day when you are gone and help keep them aware of how your health is.
 

beleache

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>KMV77</b></i> I think the main thing is my children. I sometimes worry about leaving them without a dad due to cf. Its hard to not think about the future having children. My wifes dad died at 42 from a heartattack in 1998 and I experienced what I sometimes worry about first hand....</end quote>

Hi Kevin, I understand that feeling. I spent several years worrying about what was going to happen to me. I was a late dx @ 44 so when I got dxd I thought that I had already passed my expiration date..
At that time my 2 younger sons were 3 & 6 , so I was very worried & not enjoying life to the best of my ability ..
There were several things that happened to change that for me. I had renal failure due to Tobramycin & had a near death experience. Because of that experience (& most importantly for me) got closer to God.. He gives me peace.
I realized that I was wasting precious time. I did do therapy & was put on meds for depression for a while .. I resisted this but it was what I needed at the time & came off of them after several months. Waring: These type of meds can inhibit your sex drive. which could be a whole other problem..
My 2 younger sons are now 19 & 22 (I also have a 34 & 37 y/o) I know I am not the norm when it comes to my age, but no matter what my age is I worry just like everyone else.
My advice to you, If you are religious , pray , speak to your clergy, seek out professional help, talk to your social worker, whatever it takes..
I pray that you find some peace , it all can be so overwhelming .. Please keep us posted & if you want to talk privately , PM me.
 

scarecrow

New member
As you can see I have gone past both 35 and a 32 FEV so maybe I can be of some help. You need to be open w/ your family when you can and let them know how you are feeeling. You also need to do everything that you can to keep FEV from getting below 30. I can tell you from experience that things begin to get a lot harder or altogether imposible as you work down through the 20's. EXERCISE, EXERCISE, EXERCISE. That will also improve your outlook on life. Good luck and enjoy your life every day!!!
 

Hardak

New member
Scarecrow has a point, I have a hell of a time with the asma like effects of CF, I can easy hit the 20's with a slightest irritation. Keep that FEV1 as high as you can. I might be in the high 30's low 40's now but something sets me off... and I start having O2 issues.. Keep that FEV1 up and keep active I can't say/stress this enough.
 
Top