Dying

vickysmommy

New member
Im sure many of you, like me worry about when were gonna die and we all get scared thinking about it. I'd like to know how you all deal with these thoughts. When I think about when I am going to die, I think of the people Im leaving behind, mainly my daughter. But then again I also have hope for the future, I think that SOON, they are going to find a cure, and I wont have to worry about not seeing my daughter grow up and this CF part of my life will all just be a memory
 

JennaB

New member
I think about death a lot , too, but I just kind of push it away. I am actually more scared of dying other ways than from CF. In fact, dying in the hands of someone else, (ie: being murdered) scares the h e l l out of me. I even have a big fear of someone breaking into the house, etc. That scares me more than CF.
 

vickysmommy

New member
The truth is, I think I would rather die of CF then anything else cause I dont want anything to take me sooner then Im suppost to go, you know what I mean?
 

anonymous

New member
Hi Sara,
I know exactly what you mean! I think having a child puts a whole different spin on things and you tend to be even more concerned about your mortality because of your parental responsibilities. I don't dwell on death/dying too much, but of course, do think about it from time to time. I have a son who will be 15 this summer, and I remember when he was younger I did worry often about how he and my husband would manage without me. The only thing I could do was take good care of myself and be compliant with all the treatments so I can stay in the best health possible. I know much is beyond our control, but it did (and still does) make me feel better to do what I can. I still worry about it, but maybe not as much as he is older now, not that there is any 'good' time to lose your mother... But at least he would be able to take care of himself a bit more than when he was younger. I hope this helps, sorry I don't have any good advice! I guess the best I can do is tell you that you are not alone in this! If you would like to chat feel free to email - nunnari@comcast.net

Kim
39 (40 in 3 weeks!) w/cf
 

serendipity730

New member
I think about it sometimes, and like Jenna, I try to just push it out of my head. I try to remind myself that I am doing well. Sometimes, I feel guilty when I am negligent with my meds or other treatments. And it def. is different when you bring someone else into your life, esp a child, I would imagine. I am getting married in a little over a year. I sometimes broach the topic with my future husband, but he never wants to talk about it. Not that I can blame him.
 

Diane

New member
When i was a teenager i was so obsessed with death that i couldnt sleep well at all. It got to a point where i finally started to realize EVERYONE dies and no-one is guaranteed a full long life. I remember my first love and how crazy we were about each other( lasted about 8 months), and a few years ago i was reading about a guy who was stabbed to death and it was him. Made me think ...... who would have thought, that out of the 2 of us HE "the healthy one" would be the first to go? keep in mind the victims of 9-11.... None of those people ever imagined what was to happen to them . Some young , some older , death doesnt care about age when its time , its time. When i first was diagnosed with b.cepacia 8 years ago i was horrified and thought i'd die within 2 years. I was sooooo upset that when talking about my family to one of my nurses i broke down and started crying ( something i hardly ever do in front of people). After a while i started to realize i have no control of when my time is up, as long as i take care of myself then i am doing all i can. I figure God has control over this and when it's my time , its my time, and worrying about it wont save me. I want to enjoy my time here as long as i can. Its hard not to dwell on our eventual demise sometimes especially when we get sick, but the one thing we all have in common with EVERYONE in the world is the fact that we all have a beginning and an end.
 

anonymous

New member
Have you ever felt that you are trying so hard to do the things you need to, to stay alive that you neglect or don' t do things that are out of your safety zone. I am 27 still live with my parents, set to get married in July and I realized this week that I think I am going about things wrong. I want to get married but I move from my parents to my husband and no where in there do I find the place where I can be just me. I have always been taken care of, right or wrong, when do I take care of myself, for myself. Does that make sense? My parents have always said be compliant and just wait in five years there will be something, either new meds or a cure or something to make life better. I agree with being compliant but am I pulling back so much that I am biding my time for that good thing to come along. I love my fiance very much and we are talking of cancelling the wedding for now, for various reasons but still to get married someday. I follow and do what others suggest and feel like I never chose to do what I want so I won't hurt other people. Sorry kind of off the subject. But I think about death too. Spending a month in the hospital over Christmas with a chest tube in for three weeks I was pissed and feared death is coming closer and wanted to get married. But I am realizing as much as I want to get married I really just want to be in love and enjoy what I have. How do those with children deal with it, I want to have children but I can't imagine for them what it would be like to be without a mother. I have so many questions lately and don't know where to direct them or how to word them.

Sarah
27 w/cf

log in idajune
 

anonymous

New member
Sarah, have you thought about moving out on your own, even just for the few months until July? I agree that it's important to kind of be on your own for a time, even if it's a short time. It's still a very valuable experience. I know it wouldn't make much sense financially, but I think it would be worth it. I lived with different roommates a lot between college and getting married a few years ago, and only spent one summer living completely alone. I hated it, to be honest, but I'm still glad I did it, because you learn things about yourself when you're on your own. Sounds corny, but I really thought it was true.

I cant' speak to the rest since I'm only just entering this world of CF with my baby that has it, but it seems like a lot of people on this board really have an amazing attitude. I'm worried about all of the things that I've seen posted, but for my daughter. I think the thing that keeps me okay is realizing that there is a reason for everything, and even if I never know what it is, God does.
 

anonymous

New member
<img src="i/expressions/face-icon-small-smile.gif" border="0"> Sarah, do what YOUR heart tells you, over the 5 decades of living with my CF, I have walked away from 3 relationships when I have been in doubt about my future. I have needed time by myself to gain perspective and control my wellbeing. Life is a gift and yes those with CF have a struggle at times. To give and receive love is really precious, to focus on another's needs can often lessen the dramas centred so often on just 'us'. I have found true love again, late in life, but know regardless of marriage I will not walk away from this man, he understands what he may have to deal with in the years ahead, accepts I have made arrangements and I enjoy every day, knowing that we are essentially happy!<img src="i/expressions/sun.gif" border="0">
 

WinAce

New member
Prior to May of last year, when I met the most amazing girl I ever even heard of, I didn't really dwell on it. I had come to believe, with few remaining doubts, that CF would kill me in short order, but by then, with how sick it made me on a constant basis, I was more or less indifferent to the possibility. In hindsight, that was a bad time. Nowadays, when I think morbid thoughts, I often indulge more positive emotions by writing poetry. I believe I put it best in this one:

<b>A Playwright's View</b>

"Through every setback, hope remains
And life is great...
Despite the thunder, and the rains;
No matter Fate.

With you nearby, that hope still soars
To splendid heights.
I love you deeply, wanting more,
My sweet delight.

It's been too long since last embrace,
Since last we kissed.
Since last I gazed at that adoring face...
You're sorely missed!

I know you worry, as I do
Of things in store.
Whatever happens, know: I'll love you
All the more.

No matter what the future brings,
I'll hold you near,
Regardless of how long we'll cling;
A day, or years...

The time we spend together flies,
It seems, so fast.
I never want to say goodbye;
I hope it lasts...

Regardless, though, I know you're strong
And will survive.
Our love is anything but wrong,
And I will strive...

To kiss and reassure you always,
Making clear
That even on the worst of days,
I held you dear...

You mean the world to me, my sweet,
And that's a fact.
I worship you from head to feet,
From front to back...

Those prior months with you have all
Been my life's best.
I treasured every message, call
From you, dear Jess!

It's been a joyous Broadway show
To end all shows...
You took me there, from feeling low,
You shook those woes!

And it goes on, though no one knows
Its future twists.
Though plot suspenseful, it's a show
Not to be missed!

Enjoy the play, unknown in length
Though it may be.
Together, may we find the strength
To shape it, see."</i>
 

vickysmommy

New member
My father once told me, while I was in the hospital, after having my baby, "It's easier to for you to die then for me to watch you die." Something to think about, I guess
 

Emily65Roses

New member
I agree with that a lot, Sarah. When people ask if I'm afraid of dying... the answer is usually, no not much. Except that I am afraid for Mike and what it'll do to him. Nothing much I can do about it. But I worry about him more than myself when regarding my death.
 

dresapp

New member
Death doesnt scare me, its getting there that hurts! Im afraid of the discomfort and struggle that you have to endure(if CF kills you). Im also afraid for my family and friends. What will they do without me? How will they handle it? I dont have children but I have a horse and dog that are like mine. I love them dearly and I worry about who will take care of them. Im listed for transplant(lungs, liver and pancreas) Im in a lot of pain all the time and I often wish I wouldnt wake up becasue of the pain and discomfort Im in everyday and I know i could be waiting for years for transplant. But im hanging in there and I have to have faith that what is meant to be will happen and things will be okay otherwise you spend your life worrying and you miss out on everything while you are ALIVE!
 

jaime

New member
I agree, Im not afraid of death but its terrible to think of the pain and suffering of those who love me and would be left behind. To me, that is the worst thought. I see the way my family and loved ones hurt so much when Im sick and in the hospital and I wish there was a way I could take their pain away.
Sometimes I think its easier to be the patient than to see your loved one suffer.
 

anonymous

New member
Dresapp, I never knew that you could have more then one transplant. I thought that they dont list you for lungs if you have bad liver problems and things like that! I wish you luck, Shamrock x
 

anonymous

New member
When my lung functions went down to 30% last year, I did some research on transplants and I read somewhere that if your pfts are 30% or lower you have a 50-50 chance of being alive in 2 years. I was gobsmacked and really shocked. Despite my low pfts I didnt need o2 or anything and that was the first time I thought about dying. I don't really focus on it and a year later Im still here and still fighting!
I agree with Sarah, I'd be afraid for my friends and family and how they would cope and not so much for myself..Shamrock x
 

lilcutie05

New member
hey vickysmommy i never worry about death wich is really good i am not scared of anything but yes i hope they find a cure

Hayley 10 cf/cfrd
 
L

luke

Guest
I have dealt with death in many ways but I have never been afraid of it. I am not afraid of dying, I am a saved christian and truly believe I will live on in heaven. I will say this though, I do dread the thought of not being here with my wife and my brother. I often wonder how I would make it without them and do not want them to have to live without me. So no matter how difficult it is I drag my butt out of bed every morning at 5AM for treatments in order to give myself ample gym time before work. No matter how tired I am I make time for treatments EVERY evening before bed. Sometimes I feel so tired of working so hard...but without it I would probably already be dead so I trudge on.

death is easy...staying alive is the hard part


luke 29/cf
 

anonymous

New member
Luke I agree with you staying alive is the hard part!!! BUT, the alternative I am not ready for even though I am a Christian also! I do not want to leave my husband, he means the absolute world to me. I do all my treatments even if I am bone tired and it is late at night. Sometimes if I know I am going to be out late I will do them before we go out. That is usually on vacation. I firmly believe in keeping up with the treatments and also working out and you can NOT STOP. It is hard but that is what makes us special, we keep plugging along. It ry not to think about death, although I tend to get upset about it when I have an exacerbation (sp) of my CF. But I allow myself to feel depressed for a moment and then I move on. I think it is okay to feel upset about CF you just can not let it last long. Cry, be dpressed and then pick yourself up and brush yourself off, that is my motto.

Jennifer 33yrs old with CF
 

perky79

New member
Death has never really scared me. I am a quality over quantity guy. To live a happy short life is better than to live a long painful one.
 
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