not willing to take this till the end

Faust

New member
There are generally two types of CF patients. Those who grew up with it and are at varying stages of the disease, and those who didn't grow up with it and it hit them all at once later on down the road and are at varying stages. I think the worst one to be is the latter (the one you seem to belong to). You had an apparently milder form that didn't become a problem till you were fully used to having a "normal" life. Then BAM, basically your entire world changed at a pretty rapid pace. Now you feel the entire reality of a life with CF landing on you all at the same time. Where as CF's who were dealing with this since an early diagnosis, were able to accept their reality over a much longer time.


Everyone with "mild" CF will eventually have severe CF. We all end up slowly buying the farm at varying rates. Your being diagnosed with cancer out of the blue example is pretty dead on. But with us, there is no possible cure, and it's generally a slow agonizing demise. You can do everything helpful possible (like myself with supplements, exercise, diet, full meds and vest compliance etc), and it will probably ease your symptoms and prolong your life somewhat, but we all eventually fall to it.


You are at a new stage now. You must accept where you are now, and fight for your health and keep all lung function and quality of life that you can, for as long as you can. It sucks big time (the struggle/reality of it all), but you would be amazed what you can get used to.

Also, prepare to eventually not be able to work due to time constrains of taking care of yourself. Life with CF will eventually turn into full disability where most of your day is devoted to the fight against the disease. Accept all this now, and when the progression stages show themselves, you won't freak out as bad (though you never 100% accept it).


I know this wasn't the pat on the back you were looking for, but i'm being honest with you. There are some positive sides to it all though. Your disease and the struggle it gives you creates a new person out of an old person. What do I mean? I mean the you that you were before, will have completely different (better) understandings and appreciations of life, reality, other people, animals, nature, art, music, etc etc. Totally normal people mostly go so long without being aware of their mortality, that they fail to become a better, empathic, appreciative human until they have a quickly killing disease land on them (like inoperable terminal cancer). And even when they have that, most of the time they have left is spent being angry/emotional about dying. You could possibly live another 30-40+ years maybe, and due to knowing what is going to happen, those years will be spent as a "better" person than most people.


Also, even being alive is a constant struggle is still better than being dead (regarding your suicidal thoughts). If i'm dead (from what we know) I can't have sex, eat a good meal, watch a sports game, play cards with friends, create art, listen to music, create music, read a good book, listen to children laugh and watch them play with their new eyes, dance, get angry, get happy, be proud of someone close to me, have a nice cold beer/good glass of wine, play a good video game, watch an awesome movie...The list is nearly endless. Hence why everyone of us with CF who are still here, fight every day to remain here. Religion aside, we just don't know if there is anything afterwards, and even if there is, that is fully open to interpretation of several thousand different cultures, all feeling they are right.


Cliff notes version of the above: Toughen up, lighten up, fight to stay here, and enjoy being alive.
 

Faust

New member
There are generally two types of CF patients. Those who grew up with it and are at varying stages of the disease, and those who didn't grow up with it and it hit them all at once later on down the road and are at varying stages. I think the worst one to be is the latter (the one you seem to belong to). You had an apparently milder form that didn't become a problem till you were fully used to having a "normal" life. Then BAM, basically your entire world changed at a pretty rapid pace. Now you feel the entire reality of a life with CF landing on you all at the same time. Where as CF's who were dealing with this since an early diagnosis, were able to accept their reality over a much longer time.


Everyone with "mild" CF will eventually have severe CF. We all end up slowly buying the farm at varying rates. Your being diagnosed with cancer out of the blue example is pretty dead on. But with us, there is no possible cure, and it's generally a slow agonizing demise. You can do everything helpful possible (like myself with supplements, exercise, diet, full meds and vest compliance etc), and it will probably ease your symptoms and prolong your life somewhat, but we all eventually fall to it.


You are at a new stage now. You must accept where you are now, and fight for your health and keep all lung function and quality of life that you can, for as long as you can. It sucks big time (the struggle/reality of it all), but you would be amazed what you can get used to.

Also, prepare to eventually not be able to work due to time constrains of taking care of yourself. Life with CF will eventually turn into full disability where most of your day is devoted to the fight against the disease. Accept all this now, and when the progression stages show themselves, you won't freak out as bad (though you never 100% accept it).


I know this wasn't the pat on the back you were looking for, but i'm being honest with you. There are some positive sides to it all though. Your disease and the struggle it gives you creates a new person out of an old person. What do I mean? I mean the you that you were before, will have completely different (better) understandings and appreciations of life, reality, other people, animals, nature, art, music, etc etc. Totally normal people mostly go so long without being aware of their mortality, that they fail to become a better, empathic, appreciative human until they have a quickly killing disease land on them (like inoperable terminal cancer). And even when they have that, most of the time they have left is spent being angry/emotional about dying. You could possibly live another 30-40+ years maybe, and due to knowing what is going to happen, those years will be spent as a "better" person than most people.


Also, even being alive is a constant struggle is still better than being dead (regarding your suicidal thoughts). If i'm dead (from what we know) I can't have sex, eat a good meal, watch a sports game, play cards with friends, create art, listen to music, create music, read a good book, listen to children laugh and watch them play with their new eyes, dance, get angry, get happy, be proud of someone close to me, have a nice cold beer/good glass of wine, play a good video game, watch an awesome movie...The list is nearly endless. Hence why everyone of us with CF who are still here, fight every day to remain here. Religion aside, we just don't know if there is anything afterwards, and even if there is, that is fully open to interpretation of several thousand different cultures, all feeling they are right.


Cliff notes version of the above: Toughen up, lighten up, fight to stay here, and enjoy being alive.
 

Faust

New member
There are generally two types of CF patients. Those who grew up with it and are at varying stages of the disease, and those who didn't grow up with it and it hit them all at once later on down the road and are at varying stages. I think the worst one to be is the latter (the one you seem to belong to). You had an apparently milder form that didn't become a problem till you were fully used to having a "normal" life. Then BAM, basically your entire world changed at a pretty rapid pace. Now you feel the entire reality of a life with CF landing on you all at the same time. Where as CF's who were dealing with this since an early diagnosis, were able to accept their reality over a much longer time.


Everyone with "mild" CF will eventually have severe CF. We all end up slowly buying the farm at varying rates. Your being diagnosed with cancer out of the blue example is pretty dead on. But with us, there is no possible cure, and it's generally a slow agonizing demise. You can do everything helpful possible (like myself with supplements, exercise, diet, full meds and vest compliance etc), and it will probably ease your symptoms and prolong your life somewhat, but we all eventually fall to it.


You are at a new stage now. You must accept where you are now, and fight for your health and keep all lung function and quality of life that you can, for as long as you can. It sucks big time (the struggle/reality of it all), but you would be amazed what you can get used to.

Also, prepare to eventually not be able to work due to time constrains of taking care of yourself. Life with CF will eventually turn into full disability where most of your day is devoted to the fight against the disease. Accept all this now, and when the progression stages show themselves, you won't freak out as bad (though you never 100% accept it).


I know this wasn't the pat on the back you were looking for, but i'm being honest with you. There are some positive sides to it all though. Your disease and the struggle it gives you creates a new person out of an old person. What do I mean? I mean the you that you were before, will have completely different (better) understandings and appreciations of life, reality, other people, animals, nature, art, music, etc etc. Totally normal people mostly go so long without being aware of their mortality, that they fail to become a better, empathic, appreciative human until they have a quickly killing disease land on them (like inoperable terminal cancer). And even when they have that, most of the time they have left is spent being angry/emotional about dying. You could possibly live another 30-40+ years maybe, and due to knowing what is going to happen, those years will be spent as a "better" person than most people.


Also, even being alive is a constant struggle is still better than being dead (regarding your suicidal thoughts). If i'm dead (from what we know) I can't have sex, eat a good meal, watch a sports game, play cards with friends, create art, listen to music, create music, read a good book, listen to children laugh and watch them play with their new eyes, dance, get angry, get happy, be proud of someone close to me, have a nice cold beer/good glass of wine, play a good video game, watch an awesome movie...The list is nearly endless. Hence why everyone of us with CF who are still here, fight every day to remain here. Religion aside, we just don't know if there is anything afterwards, and even if there is, that is fully open to interpretation of several thousand different cultures, all feeling they are right.


Cliff notes version of the above: Toughen up, lighten up, fight to stay here, and enjoy being alive.
 

Faust

New member
There are generally two types of CF patients. Those who grew up with it and are at varying stages of the disease, and those who didn't grow up with it and it hit them all at once later on down the road and are at varying stages. I think the worst one to be is the latter (the one you seem to belong to). You had an apparently milder form that didn't become a problem till you were fully used to having a "normal" life. Then BAM, basically your entire world changed at a pretty rapid pace. Now you feel the entire reality of a life with CF landing on you all at the same time. Where as CF's who were dealing with this since an early diagnosis, were able to accept their reality over a much longer time.


Everyone with "mild" CF will eventually have severe CF. We all end up slowly buying the farm at varying rates. Your being diagnosed with cancer out of the blue example is pretty dead on. But with us, there is no possible cure, and it's generally a slow agonizing demise. You can do everything helpful possible (like myself with supplements, exercise, diet, full meds and vest compliance etc), and it will probably ease your symptoms and prolong your life somewhat, but we all eventually fall to it.


You are at a new stage now. You must accept where you are now, and fight for your health and keep all lung function and quality of life that you can, for as long as you can. It sucks big time (the struggle/reality of it all), but you would be amazed what you can get used to.

Also, prepare to eventually not be able to work due to time constrains of taking care of yourself. Life with CF will eventually turn into full disability where most of your day is devoted to the fight against the disease. Accept all this now, and when the progression stages show themselves, you won't freak out as bad (though you never 100% accept it).


I know this wasn't the pat on the back you were looking for, but i'm being honest with you. There are some positive sides to it all though. Your disease and the struggle it gives you creates a new person out of an old person. What do I mean? I mean the you that you were before, will have completely different (better) understandings and appreciations of life, reality, other people, animals, nature, art, music, etc etc. Totally normal people mostly go so long without being aware of their mortality, that they fail to become a better, empathic, appreciative human until they have a quickly killing disease land on them (like inoperable terminal cancer). And even when they have that, most of the time they have left is spent being angry/emotional about dying. You could possibly live another 30-40+ years maybe, and due to knowing what is going to happen, those years will be spent as a "better" person than most people.


Also, even being alive is a constant struggle is still better than being dead (regarding your suicidal thoughts). If i'm dead (from what we know) I can't have sex, eat a good meal, watch a sports game, play cards with friends, create art, listen to music, create music, read a good book, listen to children laugh and watch them play with their new eyes, dance, get angry, get happy, be proud of someone close to me, have a nice cold beer/good glass of wine, play a good video game, watch an awesome movie...The list is nearly endless. Hence why everyone of us with CF who are still here, fight every day to remain here. Religion aside, we just don't know if there is anything afterwards, and even if there is, that is fully open to interpretation of several thousand different cultures, all feeling they are right.


Cliff notes version of the above: Toughen up, lighten up, fight to stay here, and enjoy being alive.
 

Faust

New member
There are generally two types of CF patients. Those who grew up with it and are at varying stages of the disease, and those who didn't grow up with it and it hit them all at once later on down the road and are at varying stages. I think the worst one to be is the latter (the one you seem to belong to). You had an apparently milder form that didn't become a problem till you were fully used to having a "normal" life. Then BAM, basically your entire world changed at a pretty rapid pace. Now you feel the entire reality of a life with CF landing on you all at the same time. Where as CF's who were dealing with this since an early diagnosis, were able to accept their reality over a much longer time.


Everyone with "mild" CF will eventually have severe CF. We all end up slowly buying the farm at varying rates. Your being diagnosed with cancer out of the blue example is pretty dead on. But with us, there is no possible cure, and it's generally a slow agonizing demise. You can do everything helpful possible (like myself with supplements, exercise, diet, full meds and vest compliance etc), and it will probably ease your symptoms and prolong your life somewhat, but we all eventually fall to it.


You are at a new stage now. You must accept where you are now, and fight for your health and keep all lung function and quality of life that you can, for as long as you can. It sucks big time (the struggle/reality of it all), but you would be amazed what you can get used to.

Also, prepare to eventually not be able to work due to time constrains of taking care of yourself. Life with CF will eventually turn into full disability where most of your day is devoted to the fight against the disease. Accept all this now, and when the progression stages show themselves, you won't freak out as bad (though you never 100% accept it).


I know this wasn't the pat on the back you were looking for, but i'm being honest with you. There are some positive sides to it all though. Your disease and the struggle it gives you creates a new person out of an old person. What do I mean? I mean the you that you were before, will have completely different (better) understandings and appreciations of life, reality, other people, animals, nature, art, music, etc etc. Totally normal people mostly go so long without being aware of their mortality, that they fail to become a better, empathic, appreciative human until they have a quickly killing disease land on them (like inoperable terminal cancer). And even when they have that, most of the time they have left is spent being angry/emotional about dying. You could possibly live another 30-40+ years maybe, and due to knowing what is going to happen, those years will be spent as a "better" person than most people.


Also, even being alive is a constant struggle is still better than being dead (regarding your suicidal thoughts). If i'm dead (from what we know) I can't have sex, eat a good meal, watch a sports game, play cards with friends, create art, listen to music, create music, read a good book, listen to children laugh and watch them play with their new eyes, dance, get angry, get happy, be proud of someone close to me, have a nice cold beer/good glass of wine, play a good video game, watch an awesome movie...The list is nearly endless. Hence why everyone of us with CF who are still here, fight every day to remain here. Religion aside, we just don't know if there is anything afterwards, and even if there is, that is fully open to interpretation of several thousand different cultures, all feeling they are right.


Cliff notes version of the above: Toughen up, lighten up, fight to stay here, and enjoy being alive.
 

lightNlife

New member
Hi Leeza,

Thank you for being so open and honest with us about your struggles. I don't know if it helps you to know this, but we all have felt like you have at some point or another. Adjusting and accepting the nature of CF is oh so difficult, especially to those of us who were only mildly symptomatic for so long.

I hope that you'll be able to find encouragement here. You are not alone in your fight.

Warmest Regards,
Lauren
 

lightNlife

New member
Hi Leeza,

Thank you for being so open and honest with us about your struggles. I don't know if it helps you to know this, but we all have felt like you have at some point or another. Adjusting and accepting the nature of CF is oh so difficult, especially to those of us who were only mildly symptomatic for so long.

I hope that you'll be able to find encouragement here. You are not alone in your fight.

Warmest Regards,
Lauren
 

lightNlife

New member
Hi Leeza,

Thank you for being so open and honest with us about your struggles. I don't know if it helps you to know this, but we all have felt like you have at some point or another. Adjusting and accepting the nature of CF is oh so difficult, especially to those of us who were only mildly symptomatic for so long.

I hope that you'll be able to find encouragement here. You are not alone in your fight.

Warmest Regards,
Lauren
 

lightNlife

New member
Hi Leeza,

Thank you for being so open and honest with us about your struggles. I don't know if it helps you to know this, but we all have felt like you have at some point or another. Adjusting and accepting the nature of CF is oh so difficult, especially to those of us who were only mildly symptomatic for so long.

I hope that you'll be able to find encouragement here. You are not alone in your fight.

Warmest Regards,
Lauren
 

lightNlife

New member
Hi Leeza,

Thank you for being so open and honest with us about your struggles. I don't know if it helps you to know this, but we all have felt like you have at some point or another. Adjusting and accepting the nature of CF is oh so difficult, especially to those of us who were only mildly symptomatic for so long.

I hope that you'll be able to find encouragement here. You are not alone in your fight.

Warmest Regards,
Lauren
 

Lance2020x

New member
As Lauren said, it's very true, we've all been to this point at some time in our lives, but saying that doesn't help a bit, it almost makes it worse because there's still no answer.
I always thought I was super healthy, so healthy I could do anything, then I did a show and worked myself WAY too hard and it took me years (literally) to get back up, my restrictions are still becoming known to me.

Please please feel free to message me if you want to talk to someone your own age who's been through that place, if you want to ask questions or vent or just compare notes, please message me.
 

Lance2020x

New member
As Lauren said, it's very true, we've all been to this point at some time in our lives, but saying that doesn't help a bit, it almost makes it worse because there's still no answer.
I always thought I was super healthy, so healthy I could do anything, then I did a show and worked myself WAY too hard and it took me years (literally) to get back up, my restrictions are still becoming known to me.

Please please feel free to message me if you want to talk to someone your own age who's been through that place, if you want to ask questions or vent or just compare notes, please message me.
 

Lance2020x

New member
As Lauren said, it's very true, we've all been to this point at some time in our lives, but saying that doesn't help a bit, it almost makes it worse because there's still no answer.
I always thought I was super healthy, so healthy I could do anything, then I did a show and worked myself WAY too hard and it took me years (literally) to get back up, my restrictions are still becoming known to me.

Please please feel free to message me if you want to talk to someone your own age who's been through that place, if you want to ask questions or vent or just compare notes, please message me.
 

Lance2020x

New member
As Lauren said, it's very true, we've all been to this point at some time in our lives, but saying that doesn't help a bit, it almost makes it worse because there's still no answer.
I always thought I was super healthy, so healthy I could do anything, then I did a show and worked myself WAY too hard and it took me years (literally) to get back up, my restrictions are still becoming known to me.

Please please feel free to message me if you want to talk to someone your own age who's been through that place, if you want to ask questions or vent or just compare notes, please message me.
 

Lance2020x

New member
As Lauren said, it's very true, we've all been to this point at some time in our lives, but saying that doesn't help a bit, it almost makes it worse because there's still no answer.
I always thought I was super healthy, so healthy I could do anything, then I did a show and worked myself WAY too hard and it took me years (literally) to get back up, my restrictions are still becoming known to me.

Please please feel free to message me if you want to talk to someone your own age who's been through that place, if you want to ask questions or vent or just compare notes, please message me.
 

JORDYSMOM

New member
Hey Leeza

Welcome to the site. I am sorry you are feeling so defeated right now. My son wasn't dx until he was 15, so I am very familiar with running head on into that "brick wall" that Faust is talking about. It really is a rude awakening!

I hope you can soon begin to see things differently. I wish I could tell you it will get better, but we all know it doesn't. You will get the cold hard truth here, but you will get so much support as well. Sometimes it is so hard to see past what we are surrounded by on a daily basis, but we must. I agree with Faust that CF is part of who we all are. Everything is different in my life because of CF. I hope you can take it's negativity and turn it into something positive in your life. Just feel free to come here and vent all you need to.
 

JORDYSMOM

New member
Hey Leeza

Welcome to the site. I am sorry you are feeling so defeated right now. My son wasn't dx until he was 15, so I am very familiar with running head on into that "brick wall" that Faust is talking about. It really is a rude awakening!

I hope you can soon begin to see things differently. I wish I could tell you it will get better, but we all know it doesn't. You will get the cold hard truth here, but you will get so much support as well. Sometimes it is so hard to see past what we are surrounded by on a daily basis, but we must. I agree with Faust that CF is part of who we all are. Everything is different in my life because of CF. I hope you can take it's negativity and turn it into something positive in your life. Just feel free to come here and vent all you need to.
 

JORDYSMOM

New member
Hey Leeza

Welcome to the site. I am sorry you are feeling so defeated right now. My son wasn't dx until he was 15, so I am very familiar with running head on into that "brick wall" that Faust is talking about. It really is a rude awakening!

I hope you can soon begin to see things differently. I wish I could tell you it will get better, but we all know it doesn't. You will get the cold hard truth here, but you will get so much support as well. Sometimes it is so hard to see past what we are surrounded by on a daily basis, but we must. I agree with Faust that CF is part of who we all are. Everything is different in my life because of CF. I hope you can take it's negativity and turn it into something positive in your life. Just feel free to come here and vent all you need to.
 

JORDYSMOM

New member
Hey Leeza

Welcome to the site. I am sorry you are feeling so defeated right now. My son wasn't dx until he was 15, so I am very familiar with running head on into that "brick wall" that Faust is talking about. It really is a rude awakening!

I hope you can soon begin to see things differently. I wish I could tell you it will get better, but we all know it doesn't. You will get the cold hard truth here, but you will get so much support as well. Sometimes it is so hard to see past what we are surrounded by on a daily basis, but we must. I agree with Faust that CF is part of who we all are. Everything is different in my life because of CF. I hope you can take it's negativity and turn it into something positive in your life. Just feel free to come here and vent all you need to.
 

JORDYSMOM

New member
Hey Leeza

Welcome to the site. I am sorry you are feeling so defeated right now. My son wasn't dx until he was 15, so I am very familiar with running head on into that "brick wall" that Faust is talking about. It really is a rude awakening!

I hope you can soon begin to see things differently. I wish I could tell you it will get better, but we all know it doesn't. You will get the cold hard truth here, but you will get so much support as well. Sometimes it is so hard to see past what we are surrounded by on a daily basis, but we must. I agree with Faust that CF is part of who we all are. Everything is different in my life because of CF. I hope you can take it's negativity and turn it into something positive in your life. Just feel free to come here and vent all you need to.
 
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