Question for Cfers amd also Cfers family members

[JennifersHope]

I was just wondering..

For CFers.. Do you find that you mimimize how you feel to "protect" your loved ones feelings and or are afraid you are going to upset them? If so do you think they do or don't know we are doing it ??

To answer my own question.. I do without a doubt.. and I am doing it more and more lately I just feel so guilty for making them worry esp since I know it will pass..... I don't know why which leads me to my second question..and I am beginning to wonder....and ask

Family members of CFers.... When your CFer keeps telling you that they are fine, do you believe them? Would you worry less if they were gut level honest with you, and took you down each road of emotions that they face ..?

I am trying to find the balance between being more honest with my family in how I am feeling and not overwhelming them because I am having a bad day.

Right now I tend to downplay everything, but it seems like the ppl who know me best, see right though me...so I end up sharing half of how I feel and then feel guilty and worry if I ruined their day...

DO you guys do this as well??

Jennifer

 

[Allie]

Oh, I could go on for hours about this. Ry used to do this all the time, and it made me CRAZY. I would honestly ask how he was doing, and it was always 'fine'. No matter how sick he 'really' was. He downplayed it as much as humanly possible.

His reasoning was that I couldn't change it anyway, so why upset me? But I wanted to be there for him, to share his frustration, to hold his hand and help him just by being there. I wish he would have leveled with me more often, so that I could have been there for him to help him go through whatever it was he was going through. I could see that he didn't feel good, I just wanted him to trust me with it.

In short, tell your close loved ones how you are. Maybe they just want to be there for you, too.

 

[Emily65Roses]

I'm weird. I divide who gets to know what. Hahaha. Without even thinking about it, I usually just skim over the top when talking to my parents. But Mike hears all of it, exactly what's bothering me, why it's bothering me, how often it bothers me, etc. I don't think it's a matter of I care about my parents more and don't want them to worry blah blah, because I'm sure they worry anyway. I think it's just more that I feel comfortable talking to Mike about that stuff in all sorts of depth. So when something is bothering me, I tell him.

 

[anonymous]

I do it both ways.
If I feel that they really give a rats *** I tell it to them straight. If I feel they are just asking because they think it's the 'right' thing to do & they really don't care what the answer is then I don't waste much time getting into details and just glaze it over.
Sometimes with family members if I know they are having a hard time themselves with health issues, I try to make it sound better than it is so they don't worry about me.

 

[ClashPunk82]

I used to do it all the time. I always said I felt fine even if I felt horrible. I also didn't want to tell my family my fears or concerns because I didn't want to upset them. I have stopped doing that though because if I keep it in anymore I'm gonna jump off a bridge. I tell my mom everything that I am feeling now and it makes me feel so much better to do so.

 

[EmilysMom]

As far as the physical with Emily, I can usually tell what's going on, even if she isn't telling me. The mental, I know she talks to Mike more, but that's okay as long as she is talking to someone !!

 

[supermanfan]

I think that is a defense mechanism that many people do. I'm sure I did it at times... funny thing is that my parents, sisters, and husband could always tell when I was coughing more, and needed a good clean out from the hospital. As I got older, I started realizing that I couldn't just say I was 'fine' to the people closest to me, and have them actually believe it.

 

[chloe]

Hello JennifersHope...

I think these are really good questions.

Personally...I want my family and loved ones to be open and honest about how they are feeling.

I can usually tell anyway...so it helps to hear them tell me how they are feeling...both physically and emotionally.

I do understand your concern about not wanting to "burden" them with everything that you are going through. But...my feeling is that if someone really does love and care for you...they want to share both the good things and the not so good things too!

I totally understand what others have said...about sharing different things with different people...depending on your relationship with them. Also...it would depend upon how it affects them...and if they can hear things and be a support and encouragement to you or not.

If when you share...they get stressed out...that isn't helpful to you...or to them.

So...I think this decision is different for everyone...and different with each individual that you share with!

Still...having people who love and care for you...is a wonderful thing! I would encourage you to share your heart with those people in in your life that you know care...and are able to deal with raw thoughts and feelings...and even times of venting.

I know it's easier said then done...but...try not to feel so guilty so much of the time! My guess is that those that love you wouldn't want you to feel that way!

With all of that said...I think that taking a break from that kind of discussion...is needed and helpful too!

Just talking about "fun things"...goes a long way in relieving the stress.

So...maybe what I'm saying is...try to have a balance. So that you can focus on other things...and not focus on the negative too much of the time.

Well...at least that's what I try to do...and it really seems to help. I'm still learning...but feel that I am moving forward in this area also.

I'm really looking forward to hearing what others have to say on this.

I think we can all learn from this...and become better friends and family because of it!

Well JennifersHope...thanks for the thought provoking question!!

I am praying for you!!

Hugs...Chloe

 

[JennifersHope]

Thanks for your replies. I appreciate them..

Allie your husband was blessed to have you... your reply touched my heart....

It helps to give me insight as to why I am doing what I do... I have ppl that are closer to me than my own blood family that would go to the end of the world for me... and I know it.. I guess I feel like I don't want to take advantage of their love for me by calling them up and emotionally throwing up on them just because I am not feeling good... but like most of you said .. you have to get it out sometimes or you do want to jump off a bridge..... and the advice I was given was. get it out so you can feel better but don't dwell on it.... or I will get depressed.. which I agree with and I do usually feel better as long as someone understands me and what I am feeling....


For those of you that now use your boyfriend/husband to vent to (Emily and supermanfan) , before them who did you use ??? and I am not saying you should feel, but how do you not feel as if you are a burden to them....I always am afraid as being seen as a burden...

Thanks again for all you input, your understanding and advice is really helping me to proces this stuff... I tried to read the CF book that is for PPL who were dx with CF as an adult.. but it really doesn't address any of these emotional issues that all of a sudden slap you in the face...I wish someone would write a book about the emotions you face and like practical ways that you can switch gears to now face CF.. like how you are supposed to live the rest of your life with this new found disease also....addressing... what happends if you actually outlive your parents and your not married. who s going to take care of you.. blah blah blah.. I guess years ago outliving your parents wasn't really a concern... and now I think to myself how dependant I am on them to take care of me when I am sick what am I going to do without them ..

Anyway..

Thank again,

Jennifer

 

[JennifersHope]

Oh I didn't see Chloes response before I posted.... I couldn't agree more.. about finding a balance.. I love to talk about fun things too. it always changes my mood right around.. I think it is as helpful as venting....I do like to use that..like talking about fun times I had or am going to have.. I get such an excitement in my heart when I think about things I really enjoy... it does wonders for me....

Thanks for you input as well

Jennifer

 

[Emily65Roses]

Before Mike I didn't really use much of anyone. I didn't have problems that were big enough to complain about, really, until I was 16. I had another boyfriend on and off (also my best friend when we weren't dating) when I was 16 and 17, and I talked to him some. Really, before Mike I can't remember complaining to much of anyone. Maybe I didn't have as much to complain about, maybe I just kept it to myself, not really sure.

As for feeling like a burden, I know we shouldn't. But of course I do sometimes. We all do, I imagine. So let's see. Mike is really good about it, so that most times it just doesn't occur to me to worry about being a pain in the butt. If I'm talking to him about something that's bothering me, he'll either listen quietly and not say much (what are you supposed to say to CF complaints?), or he'll make some sarcastic comment about "oh great, I'm so glad you're coughing up chewy chunks." Usually makes me chuckle a little bit. I suppose it's also because, although his problems aren't health related, Mike has a lot of crap on his mind and a lot of crap he deals with (though most of it is his own not-willing-to-grow-up fault), and I listen to those all the time. So we sort of even out, almost.

I don't suppose a lot of that makes sense, but that's the best I can do for now, as I'm distracted. Hahaha.

 

[65rosessamurai]

When I was young, I sometimes didn't have to say anything, my mom could tell just by looking at my face.
As I got older, I did tend to say less about how I felt, unless I REALLY had to (like the time I dehydrated myself in the summer--not fun!)
When I came to Japan, my former wife once told me I "complained" too much about feeling bad, so I stopped to say anything.
Even when I had my accident with injuring my shoulder. I was in daily pain then, but wouldn't tell her...or others. Another reason to not show pain, was related to the my experience in the Martial Arts (esp. during sparring, or a fight!)
However, like Emily65Roses, I have put on a list, who's to know, and who isn't about my health, etc. I have completely closed out co-workers, unless I have to say something, and even then it's either rare, or when it becomes pertinent to the discussion with my boss or the upper management (ie. why didn't I get so and so job done on time--duh, I was sick the other day, JERK!)
My Mother-in-Law is, unfortunately the coldest human being in the world, next to my Ex! A few times I was laying down resting from not feeling well, she starts yelling at my wife, starting an argument. When my wife said to tone it down because I'm resting, I heard her mom say, "So What! I'm Hungry, what's to EAT?"
My new wife, I try not to let her know too many details, other than when I tell her I don't feel well, I tell her what I did to help feel better, like take some medicine, rest or something. I figure she'll worry less when she knows I took care of the problem, and it would seem like less of a burden.
As for when discussing problems at work, I use the same theory, which is tell her what I did when the problem occurred, then I can let off a little stress, and we sometimes even laugh or joke about it. (We do that ALL the time with her mother, too!)

 

[kybert]

i try not to tell my mum how im feeling or ask her for anything. not because she will worry or get upset, but because she will act like a complete moron and say things like 'i dont want to take you to the hospital i have to clean the house' 'oh stop whinging im watching tv' 'oh do i HAVE to go out and get you medicine? can it wait till next week' 'x person is worse than you so shuttup' 'my whole day is going to be wasted isnt it?'. yep. talking to a brick wall is better.

 

[wallflower]

Sometimes I wonder if it's me trying to keep my family from worrying too much, or me just not paying close enough attention to myself. My Mom and Grandma always give me an update whenever I talk or see them (Well, you sound ok...Did you lose weight?...How come your coughing so much). I find that when I am sick, I don't really go out of my way to tell anyone. I guess I feel that I don't want people thinking that I can't take care of myself, or that they will over react to something I can't control (like when I cough up blood).

I am better at talking to my boyfriend about my health. He is really great about listening and helping/supporting me with things I need to do. I do get worried about telling about the stuff that is scary for me (like coughing up blood - not for a while now, knock on wood), cause I don't want him to be scared about being with me. I guess I try so hard to live like a 'normal' person that I downplay my cf to an extent. Like, he knows I spit stuff up, but I don't go into too much detail about it - so it totally surprised me when coming back from a cf conference that he was talking about how he could tell who had 'good' coughs and who didn't. I guess I realized that just because I may not talk about it, doesn't mean he can't see (or hear) it! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JennifersHope]

Kylie,

I just read your response and I wanted to say that I am sorry that you are treated that way. I wish that I could take care of you myself or that someone would take care of you in the way that you were intended to be taken care of. You should be treated with love and respect, I don't know why your mum treats you that way, maybe she is unable to deal with things... not that that is a valid excuse or anything.

My father often overeacts and yells at me when I am sick, he gets really upset and feels like he wants to control things with me to get me better... he overeacts because he feels helpless to help me... and he loves me so much...Maybe your mum isn't able to deal with you being sick. I don't know.. but either way... that is no way for you to be treated...and although I can't do anything about it.. just wanted to let you know I am sorry....

Jennifer

 

[kybert]

she does it mainly because she has this unhealthy obsession with cleaning [im being serious here]. she cleans for most of the day and if someone interupts her she turns into the most biggest raging menopausal cow you have ever seen. its like the world is going to end if she misses 1 day of vacuuming. other times she does it just because she wants to be lazy. when she does 'surrender' and does what she needs and should do for me, she tries to get attention and sympathy from her friends. typical phrases 'ive spent half the day at the hospital'. not '<b>kylie</b> has spent half the day at the hospital'.

 

[anonymous]

Thank-you for posting this; I check this message board frquently in hopes of better understanding CF/CFRD. My heart still belongs (and aches) for a man LIVING with CFRD. I never once felt sorry for him but I do have to admit that when he told me my heart skipped a beat. I was scared and immediately thought of death. Just like with anything or anyone in life, ignorance and lack of knowledge brings forth these feelings. Through discussions with this angel of mine and intense research, my fears slowly diminished and I accepted him LIVING with CFRD and not dying of CFRD. My sister has a termianlly-ill disease (Huntington's Disease or HD) and I have watched her deteriorate slowly over the last 10 years. I am angry and would give my entire self to make her stop suffering and live but I decided long ago that being angry wasn't the best choice...now I educate people on HD and it helps me deal...I know that I do not have CF and even if I could imagine being in your shoes each day I am not sure that I would want to tell everyone my deal...I have had 15 knee surgeries, severe case of scoliosis, uterin cancer twice, etc. before I was 27. But ya know what? My sister puts me in my place EVERYDAY b/c she is no longer in control of her life. I know I am rambling on here but my whole point is that the love of my life shut me out w/the "I'm fine" deal and some days I let it go and some days (like when he was major hypo and had no clue who I was) I didn't let it slide. He became mean and non-feeling at any given moment...I just miss him like no other...I saw him for who he was on the inside and not as a walking chronic illness. He loved this at first and would tell me of his bad days-then he began pushing me away. I can look past his meanness-but for only sooo long. After awhile, you start to believe it yourself. I had to draw the line between what was his illness and what was just him being a hardass. Perhaps the hardass was brought on by the illness...sigh. Talk to those that TRULY care about you. Please. Hugs and smiles to all. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jeremiah Gene Potter, I love you

Stephanie

 

[anonymous]

<blockquote>Quote<br><hr>LIVE WELL, LAUGH OFTEN, LOVE MUCH.<hr></blockquote> <img src="i/expressions/angel_ani.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/heart.gif" border="0">

 

[anonymous]

Kylie-I just read your post and I was taken aback by what you wrote. I am sorry that your support system at home, for lack of a better word-sucks, but know that there are people out there in this oh-so-crazy-world we live in that DO care about you. CF or no CF. You are loved and surround yourself around the positive and not the negative. It'll do your health wonders. Hugs to you-hold your head high, your above this bull sh*t! Stephanie <img src="i/expressions/face-icon-small-smile.gif" border="0">