Mind over matter...how do you deal

[coltsfan715]

I like this post my friends and I were talking about this just the other day. Not just in the aspects of CF but life in general.

I just deal with things. I have never really thought about it being a problem for any prolonged period of time. Like everyone says I have my days and my moments but they are normally short lived. I have known I have CF for quite a while and I have known what CF is for a long time as well. I know the life expectancy and I have ideas of what I can expect to happen to me as time passes. I choose not to think of and dwell on these things. I find my life is more depressing when I focus on all the negatives that CF can bring. I live my life day to day, I do my meds, go to appointments and live. I have moments everyday where I forget that I have CF even though I take nebs and do CPT for about 1.5 hours in the AM AND PM, take 5 enzymes per meal, antibiotics, vitamins, minerals, asthma meds, allergy meds, reflux meds and so on and use O2 full time. I am still able to forget about CF. I live and enjoy things and I do not let it get me down most of the time.

I try to remind myself that obsessing over something will not change it - I may not like being on O2 and it may be a hard adjustment but if I dwell on it ... will it change ... No it won't so stop dwelling. I hate that I have CF and have to deal with everything that comes with it, if I dwell on it will it change ... No it won't so move on stop dwelling. That is the basic attitude I try to keep.

I believe in God and I think that has kept me sane over the years. To know that this has not been given to me for no reason at all and no real plan that it was not complete chance and randomness and that when all is said and done that I will not disappear into nothingness knowing nothing but life with this disease. The fact that I do not believe that and that I do believe that God will take care of me ultimately, what should be done will be done and I will be alright in the end. Though I sometimes forget and have to remind myself of that - I do believe it and it helps put me at ease.

Overall I try to smile and laugh a few times a day. I try to make someone else smile at least once too. It does alot for the soul to make others happy as well as yourself.

Take Care,
Lindsey

 

[EKBamberg]

People ask me this question all the time. I respond that I don't really know. As I was diagnosed as an infant, some of my first memories in life were doing treatments. Because I have lived my entire life knowing about the progressive nature of the disease, knowing my life expectancy, and knowing the reason I am 9 inches shorter than everyone else was because of a fatal disease, it really didn't affect me at all.

In high school my introverted nature kept me from talking to anyone. I went through the first 17 years of my life without anyone knowing that I was living with a serious illness. It never really struck me how serious it was either: I was always athletic and nothing slowed me down. I won fitness awards 5 consecutive years in elementary, and was a varsity athlete 3 of my 4 high school years. My FEV was always high 90's and all the doctors said I would live a long healthy life. I was convinced that I would.

Then I went to college. Things changed. I began pretentiously pondering life's philosophical questions as all college freshmen do. But with CF, I came up with different answers. To keep life happy and optimistic I leaned towards Buddhism to supplement what was at the time dying Christianity. Double majoring in biology and chemistry lead me through a stage of deism, and it took a whole semester to regain my faith. But in that time I lost my childish optimism to what has become a fatalist viewpoint when it comes to my health. All this was confirmed by my ever dropping FEV. I attributed this decline to my lack of exercise and preoccupation with studying. My sophomore year I signed up for 18 hours each semester. I had to drop tennis, taekwondo, swing dance, jiu jitsu, and daily running ruitines to keep up with the demands of upper level classes. I had a wake-up call last February as my function dropped a total of 40% since my freshmen year.

I panicked. I dropped a class, and have been trying to re-implement my exercise routines to maintain my lungs. I suppose outwardly I take a pragmatic and healthy approach to my illness. But every so often I get depressed. This depression is very short lived (only about a couple hours a day, maybe once a week), and does not affect any choices I make, and because I am withdrawing more and more from the friends that I have made, no one can notice. I feel helpless, and am having to face my mortality too young.

Throughout my life, I have known what will happen, but seeing my imminent death manifest itself is quite scary. In retrospect I have lived my life as fast as I can, feeling disgusted by wasting time, trying to experience everything possible, all to catch up with what I know will catch up with me. This mindset applied to my physical well being also. I use to workout (cardio and resistance training) up to 20 hours a week. I have overcome the stereotypical CF stature as I am now 6' 155 lbs with a BMI of around 19. I can benchpress my weight and run a 6.5 minute mile. Growing up I would not let this disease be 'debilitating' and did my best to outperform my co-athletes in tennis and martial arts with considerable success. Although sometimes I counter this realistic mindset with the apathetic 'what's the point' attitude, I will not let my emotions overcome my goals.

All this ambivalence my seem confusing, and if it is you may understand how I feel about living with cystic fibrosis. I will keep on keepin on, and try to stay ahead of the disease, but my attitude probably will continue to fluctuate. I hate admitting fear, but I will say that I just hope they find a cure.

 

[EKBamberg]

People ask me this question all the time. I respond that I don't really know. As I was diagnosed as an infant, some of my first memories in life were doing treatments. Because I have lived my entire life knowing about the progressive nature of the disease, knowing my life expectancy, and knowing the reason I am 9 inches shorter than everyone else was because of a fatal disease, it really didn't affect me at all.

In high school my introverted nature kept me from talking to anyone. I went through the first 17 years of my life without anyone knowing that I was living with a serious illness. It never really struck me how serious it was either: I was always athletic and nothing slowed me down. I won fitness awards 5 consecutive years in elementary, and was a varsity athlete 3 of my 4 high school years. My FEV was always high 90's and all the doctors said I would live a long healthy life. I was convinced that I would.

Then I went to college. Things changed. I began pretentiously pondering life's philosophical questions as all college freshmen do. But with CF, I came up with different answers. To keep life happy and optimistic I leaned towards Buddhism to supplement what was at the time dying Christianity. Double majoring in biology and chemistry lead me through a stage of deism, and it took a whole semester to regain my faith. But in that time I lost my childish optimism to what has become a fatalist viewpoint when it comes to my health. All this was confirmed by my ever dropping FEV. I attributed this decline to my lack of exercise and preoccupation with studying. My sophomore year I signed up for 18 hours each semester. I had to drop tennis, taekwondo, swing dance, jiu jitsu, and daily running ruitines to keep up with the demands of upper level classes. I had a wake-up call last February as my function dropped a total of 40% since my freshmen year.

I panicked. I dropped a class, and have been trying to re-implement my exercise routines to maintain my lungs. I suppose outwardly I take a pragmatic and healthy approach to my illness. But every so often I get depressed. This depression is very short lived (only about a couple hours a day, maybe once a week), and does not affect any choices I make, and because I am withdrawing more and more from the friends that I have made, no one can notice. I feel helpless, and am having to face my mortality too young.

Throughout my life, I have known what will happen, but seeing my imminent death manifest itself is quite scary. In retrospect I have lived my life as fast as I can, feeling disgusted by wasting time, trying to experience everything possible, all to catch up with what I know will catch up with me. This mindset applied to my physical well being also. I use to workout (cardio and resistance training) up to 20 hours a week. I have overcome the stereotypical CF stature as I am now 6' 155 lbs with a BMI of around 19. I can benchpress my weight and run a 6.5 minute mile. Growing up I would not let this disease be 'debilitating' and did my best to outperform my co-athletes in tennis and martial arts with considerable success. Although sometimes I counter this realistic mindset with the apathetic 'what's the point' attitude, I will not let my emotions overcome my goals.

All this ambivalence my seem confusing, and if it is you may understand how I feel about living with cystic fibrosis. I will keep on keepin on, and try to stay ahead of the disease, but my attitude probably will continue to fluctuate. I hate admitting fear, but I will say that I just hope they find a cure.

 

[EKBamberg]

People ask me this question all the time. I respond that I don't really know. As I was diagnosed as an infant, some of my first memories in life were doing treatments. Because I have lived my entire life knowing about the progressive nature of the disease, knowing my life expectancy, and knowing the reason I am 9 inches shorter than everyone else was because of a fatal disease, it really didn't affect me at all.

In high school my introverted nature kept me from talking to anyone. I went through the first 17 years of my life without anyone knowing that I was living with a serious illness. It never really struck me how serious it was either: I was always athletic and nothing slowed me down. I won fitness awards 5 consecutive years in elementary, and was a varsity athlete 3 of my 4 high school years. My FEV was always high 90's and all the doctors said I would live a long healthy life. I was convinced that I would.

Then I went to college. Things changed. I began pretentiously pondering life's philosophical questions as all college freshmen do. But with CF, I came up with different answers. To keep life happy and optimistic I leaned towards Buddhism to supplement what was at the time dying Christianity. Double majoring in biology and chemistry lead me through a stage of deism, and it took a whole semester to regain my faith. But in that time I lost my childish optimism to what has become a fatalist viewpoint when it comes to my health. All this was confirmed by my ever dropping FEV. I attributed this decline to my lack of exercise and preoccupation with studying. My sophomore year I signed up for 18 hours each semester. I had to drop tennis, taekwondo, swing dance, jiu jitsu, and daily running ruitines to keep up with the demands of upper level classes. I had a wake-up call last February as my function dropped a total of 40% since my freshmen year.

I panicked. I dropped a class, and have been trying to re-implement my exercise routines to maintain my lungs. I suppose outwardly I take a pragmatic and healthy approach to my illness. But every so often I get depressed. This depression is very short lived (only about a couple hours a day, maybe once a week), and does not affect any choices I make, and because I am withdrawing more and more from the friends that I have made, no one can notice. I feel helpless, and am having to face my mortality too young.

Throughout my life, I have known what will happen, but seeing my imminent death manifest itself is quite scary. In retrospect I have lived my life as fast as I can, feeling disgusted by wasting time, trying to experience everything possible, all to catch up with what I know will catch up with me. This mindset applied to my physical well being also. I use to workout (cardio and resistance training) up to 20 hours a week. I have overcome the stereotypical CF stature as I am now 6' 155 lbs with a BMI of around 19. I can benchpress my weight and run a 6.5 minute mile. Growing up I would not let this disease be 'debilitating' and did my best to outperform my co-athletes in tennis and martial arts with considerable success. Although sometimes I counter this realistic mindset with the apathetic 'what's the point' attitude, I will not let my emotions overcome my goals.

All this ambivalence my seem confusing, and if it is you may understand how I feel about living with cystic fibrosis. I will keep on keepin on, and try to stay ahead of the disease, but my attitude probably will continue to fluctuate. I hate admitting fear, but I will say that I just hope they find a cure.

 

[JazzysMom]

HMMMMM I think I am balanced! I think of the prospects of the future, but live for today. That thought pattern isnt solely from CF tho. I try to be positive or at least find the positive in things just because it makes it easier for everyone in my life including myself. That doesnt mean I dont speak of the negatives aspects or pretend they dont exist. IF it needs to be addressed I do so. I dont put all my stock in medicine just as I dont put all my stock in any religious faith or myself. I think its a little of everything. The way I look at it is that if one isnt so stable at the moment the others being there wont let me fall. As I have gotten older and my CF has progressed it makes certain things more of a priority. Especially with having my daughter. Preparation for things that I took for granted at a younger age are more important. My oldest sis is the only one in my family to ask "how I do it". My answer always is the same...."I dont really have a choice." THAT being said tho.....not fearing the future helps me. Out of everything that can & will happen. The ONLY thing that concerns me is how my daughter will prevail. I dont know if I would think of this AS much had I not lost my Dad before I was an adult. That is my view of things.....

 

[JazzysMom]

HMMMMM I think I am balanced! I think of the prospects of the future, but live for today. That thought pattern isnt solely from CF tho. I try to be positive or at least find the positive in things just because it makes it easier for everyone in my life including myself. That doesnt mean I dont speak of the negatives aspects or pretend they dont exist. IF it needs to be addressed I do so. I dont put all my stock in medicine just as I dont put all my stock in any religious faith or myself. I think its a little of everything. The way I look at it is that if one isnt so stable at the moment the others being there wont let me fall. As I have gotten older and my CF has progressed it makes certain things more of a priority. Especially with having my daughter. Preparation for things that I took for granted at a younger age are more important. My oldest sis is the only one in my family to ask "how I do it". My answer always is the same...."I dont really have a choice." THAT being said tho.....not fearing the future helps me. Out of everything that can & will happen. The ONLY thing that concerns me is how my daughter will prevail. I dont know if I would think of this AS much had I not lost my Dad before I was an adult. That is my view of things.....

 

[JazzysMom]

HMMMMM I think I am balanced! I think of the prospects of the future, but live for today. That thought pattern isnt solely from CF tho. I try to be positive or at least find the positive in things just because it makes it easier for everyone in my life including myself. That doesnt mean I dont speak of the negatives aspects or pretend they dont exist. IF it needs to be addressed I do so. I dont put all my stock in medicine just as I dont put all my stock in any religious faith or myself. I think its a little of everything. The way I look at it is that if one isnt so stable at the moment the others being there wont let me fall. As I have gotten older and my CF has progressed it makes certain things more of a priority. Especially with having my daughter. Preparation for things that I took for granted at a younger age are more important. My oldest sis is the only one in my family to ask "how I do it". My answer always is the same...."I dont really have a choice." THAT being said tho.....not fearing the future helps me. Out of everything that can & will happen. The ONLY thing that concerns me is how my daughter will prevail. I dont know if I would think of this AS much had I not lost my Dad before I was an adult. That is my view of things.....

 

[Diane]

oopsie

 

[Diane]

oopsie

 

[Diane]

oopsie

 

[Diane]

I deal with things very well while i am feeling good. Once i was diagnosed with cepacia i was introduced to new things i had never done before like hospitalizations, iv's, the need for clearance therapies, inhaled medicines, so that year was very very rough for me and all i could think of was my soon impending death. As time went on and i started feeling well again, i went back to my usual cheerful self. I usually stay on an even keel unless i am having an exacerbation or something new crops up ( like my latest aspergiloma, fungus ball) . It takes me a little while till i bounce back to my happy ol' self. I dont think there are many people with cf that are ever truely in denial. I think we all know what cf can do and sometimes maybe a little denial can be a good thing. Might be the only way someone going thru a rough time can manage to get thru, but that might be called hope rather than denial....
I also have faith in God and what his plan is for me. I know for a fact that when i had my massive bleed 5 years ago , it didnt just decide to stop on its own. I believe with my whole heart that God had a hand in that especially since i called out to him between gasps, and thats when it suddenly stopped. Cf can be very difficult to deal with and there will be times when having the ability to cope seems like too much to ask, but somehow we find ways to do it.

 

[Diane]

I deal with things very well while i am feeling good. Once i was diagnosed with cepacia i was introduced to new things i had never done before like hospitalizations, iv's, the need for clearance therapies, inhaled medicines, so that year was very very rough for me and all i could think of was my soon impending death. As time went on and i started feeling well again, i went back to my usual cheerful self. I usually stay on an even keel unless i am having an exacerbation or something new crops up ( like my latest aspergiloma, fungus ball) . It takes me a little while till i bounce back to my happy ol' self. I dont think there are many people with cf that are ever truely in denial. I think we all know what cf can do and sometimes maybe a little denial can be a good thing. Might be the only way someone going thru a rough time can manage to get thru, but that might be called hope rather than denial....
I also have faith in God and what his plan is for me. I know for a fact that when i had my massive bleed 5 years ago , it didnt just decide to stop on its own. I believe with my whole heart that God had a hand in that especially since i called out to him between gasps, and thats when it suddenly stopped. Cf can be very difficult to deal with and there will be times when having the ability to cope seems like too much to ask, but somehow we find ways to do it.

 

[Diane]

I deal with things very well while i am feeling good. Once i was diagnosed with cepacia i was introduced to new things i had never done before like hospitalizations, iv's, the need for clearance therapies, inhaled medicines, so that year was very very rough for me and all i could think of was my soon impending death. As time went on and i started feeling well again, i went back to my usual cheerful self. I usually stay on an even keel unless i am having an exacerbation or something new crops up ( like my latest aspergiloma, fungus ball) . It takes me a little while till i bounce back to my happy ol' self. I dont think there are many people with cf that are ever truely in denial. I think we all know what cf can do and sometimes maybe a little denial can be a good thing. Might be the only way someone going thru a rough time can manage to get thru, but that might be called hope rather than denial....
I also have faith in God and what his plan is for me. I know for a fact that when i had my massive bleed 5 years ago , it didnt just decide to stop on its own. I believe with my whole heart that God had a hand in that especially since i called out to him between gasps, and thats when it suddenly stopped. Cf can be very difficult to deal with and there will be times when having the ability to cope seems like too much to ask, but somehow we find ways to do it.

 

[dramamama]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lynda</b></i>


I've given a lot of thought to this very subject lately because of a common misperception I think others have, which is....I think almost all of us realize that we will die earlier than our non-CF counter-parts due to the nature of our disease, but somehow when we don't think of it everyday & ponder it daily, then we are accused of being in denial. OR, if, God forbid, we get brave & think that things may just improve a little bit with our health, then we're waaay in denial.



Then I've thought of the angle of when it comes down to the last breaths of life, are people that think of it & ponder on it all of their lives going to be any better off than people that knew that it would happen, but chose to deal with it when it's time to deal with it??

And, at that point, does it really matter?



A lot to ponder....</end quote></div>

I actually think about this a lot as well. I read a book a long time ago called <u>In His Hands</u>. Anyway, the lady in it had terminal lymphoma. She had been told she was in terrible denial over and over by many of the social workers because she believed in total healing because she had great faith: "[Why]was this woman so engrossed in presenting her own opinions? Was she unaware that we had already been through this [bone marrow transplant] before?....I felt that I had accepted reality, but that I had something so much greater than the world had to offer. Faith." she continues with, "I even tried to look at the situation from another point of view.What if I had all this beautiful faith that God gave me, and up until my last breath, I believed for my healing? Even if I never received my eathly desire, can you thinkof any more beautiful way to go?!!" She ends up beating cancer, by they way.

I guess this is how I feel. I don't understand the denial thing. I guess a little bit is nice to cushion the gravity of the situation, but really, I know my illness, I know how bad it is, I just choose not to think about the end of my life too much. Do I get sad, yes, do I get get bummed when I have a new problem--of course. But, I don't lose faith and I certainly don't say I am gonna die sooner than someone else....I mean, what does that really mean. How does that help me stay in the fight?

I love this topic because I love getting to know how all of us deal with something so big....I am so thankful for you guys!!!

 

[dramamama]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lynda</b></i>


I've given a lot of thought to this very subject lately because of a common misperception I think others have, which is....I think almost all of us realize that we will die earlier than our non-CF counter-parts due to the nature of our disease, but somehow when we don't think of it everyday & ponder it daily, then we are accused of being in denial. OR, if, God forbid, we get brave & think that things may just improve a little bit with our health, then we're waaay in denial.



Then I've thought of the angle of when it comes down to the last breaths of life, are people that think of it & ponder on it all of their lives going to be any better off than people that knew that it would happen, but chose to deal with it when it's time to deal with it??

And, at that point, does it really matter?



A lot to ponder....</end quote></div>

I actually think about this a lot as well. I read a book a long time ago called <u>In His Hands</u>. Anyway, the lady in it had terminal lymphoma. She had been told she was in terrible denial over and over by many of the social workers because she believed in total healing because she had great faith: "[Why]was this woman so engrossed in presenting her own opinions? Was she unaware that we had already been through this [bone marrow transplant] before?....I felt that I had accepted reality, but that I had something so much greater than the world had to offer. Faith." she continues with, "I even tried to look at the situation from another point of view.What if I had all this beautiful faith that God gave me, and up until my last breath, I believed for my healing? Even if I never received my eathly desire, can you thinkof any more beautiful way to go?!!" She ends up beating cancer, by they way.

I guess this is how I feel. I don't understand the denial thing. I guess a little bit is nice to cushion the gravity of the situation, but really, I know my illness, I know how bad it is, I just choose not to think about the end of my life too much. Do I get sad, yes, do I get get bummed when I have a new problem--of course. But, I don't lose faith and I certainly don't say I am gonna die sooner than someone else....I mean, what does that really mean. How does that help me stay in the fight?

I love this topic because I love getting to know how all of us deal with something so big....I am so thankful for you guys!!!

 

[dramamama]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lynda</b></i>


I've given a lot of thought to this very subject lately because of a common misperception I think others have, which is....I think almost all of us realize that we will die earlier than our non-CF counter-parts due to the nature of our disease, but somehow when we don't think of it everyday & ponder it daily, then we are accused of being in denial. OR, if, God forbid, we get brave & think that things may just improve a little bit with our health, then we're waaay in denial.



Then I've thought of the angle of when it comes down to the last breaths of life, are people that think of it & ponder on it all of their lives going to be any better off than people that knew that it would happen, but chose to deal with it when it's time to deal with it??

And, at that point, does it really matter?



A lot to ponder....</end quote></div>

I actually think about this a lot as well. I read a book a long time ago called <u>In His Hands</u>. Anyway, the lady in it had terminal lymphoma. She had been told she was in terrible denial over and over by many of the social workers because she believed in total healing because she had great faith: "[Why]was this woman so engrossed in presenting her own opinions? Was she unaware that we had already been through this [bone marrow transplant] before?....I felt that I had accepted reality, but that I had something so much greater than the world had to offer. Faith." she continues with, "I even tried to look at the situation from another point of view.What if I had all this beautiful faith that God gave me, and up until my last breath, I believed for my healing? Even if I never received my eathly desire, can you thinkof any more beautiful way to go?!!" She ends up beating cancer, by they way.

I guess this is how I feel. I don't understand the denial thing. I guess a little bit is nice to cushion the gravity of the situation, but really, I know my illness, I know how bad it is, I just choose not to think about the end of my life too much. Do I get sad, yes, do I get get bummed when I have a new problem--of course. But, I don't lose faith and I certainly don't say I am gonna die sooner than someone else....I mean, what does that really mean. How does that help me stay in the fight?

I love this topic because I love getting to know how all of us deal with something so big....I am so thankful for you guys!!!

 

[Chaggie]

It may be that I am still in very good health at 34, but for me, I don't really think about it, I have more important things to worry about at this time than how long I am going to be around. I do my treatments and my meds and research things that may keep me around longer, but I have a wife and a job that take up most of my time. I do have a very positive attitude with most things I do. I have planned and have provisions in place for when it I won't be around. CF is what it is, I do what I have to do and live my life the way I want.

 

[Chaggie]

It may be that I am still in very good health at 34, but for me, I don't really think about it, I have more important things to worry about at this time than how long I am going to be around. I do my treatments and my meds and research things that may keep me around longer, but I have a wife and a job that take up most of my time. I do have a very positive attitude with most things I do. I have planned and have provisions in place for when it I won't be around. CF is what it is, I do what I have to do and live my life the way I want.

 

[Chaggie]

It may be that I am still in very good health at 34, but for me, I don't really think about it, I have more important things to worry about at this time than how long I am going to be around. I do my treatments and my meds and research things that may keep me around longer, but I have a wife and a job that take up most of my time. I do have a very positive attitude with most things I do. I have planned and have provisions in place for when it I won't be around. CF is what it is, I do what I have to do and live my life the way I want.

 

[Landy]

Dramamama,
That is a neat example you shared. Sometimes I wonder if people perceive a positive attitude as denial??

One time, yeara ago, at the CF Clinic, the psychologist brought up the possibility of premature death & he acted put out or something that I wasn't just wringing my hands in despair over coping with the idea. It just struck me as kind of amusing, for lack of a better word.