not knowing other CF patients can make you feel ALONE extremely ALONE..then you start thinking about life and how abnormal it is..when sleeping i never know if im going to make it through the nite constantly coughing not bein able to breath when sleeping..so many times i have woke up gasping for air, or coughin blood up...my stomach is always in an up-roar..i have felt so alone for so many years then i found this site and ...well i still kinda feel alone...i constantly think to myself.. "will i ever have kids?".."will i ever find someone thats accepts me for who i am and what i have?"..."how am i going to die?"...and then theres the thoughts about DYING..yes everybody dies but will i die from a transplant?..will i die from exaserbation?...is my heart going to give out?..my life is a never ending battle, i have learned soo much about CF, about life, about appreciating things,..i am a walking miracle...and so are all the other CF patients...and everyday we still learn about ourselves and our CF...
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
when you feel alone
- Thread starter sexxiej
- Start date
not knowing other CF patients can make you feel ALONE extremely ALONE..then you start thinking about life and how abnormal it is..when sleeping i never know if im going to make it through the nite constantly coughing not bein able to breath when sleeping..so many times i have woke up gasping for air, or coughin blood up...my stomach is always in an up-roar..i have felt so alone for so many years then i found this site and ...well i still kinda feel alone...i constantly think to myself.. "will i ever have kids?".."will i ever find someone thats accepts me for who i am and what i have?"..."how am i going to die?"...and then theres the thoughts about DYING..yes everybody dies but will i die from a transplant?..will i die from exaserbation?...is my heart going to give out?..my life is a never ending battle, i have learned soo much about CF, about life, about appreciating things,..i am a walking miracle...and so are all the other CF patients...and everyday we still learn about ourselves and our CF...
not knowing other CF patients can make you feel ALONE extremely ALONE..then you start thinking about life and how abnormal it is..when sleeping i never know if im going to make it through the nite constantly coughing not bein able to breath when sleeping..so many times i have woke up gasping for air, or coughin blood up...my stomach is always in an up-roar..i have felt so alone for so many years then i found this site and ...well i still kinda feel alone...i constantly think to myself.. "will i ever have kids?".."will i ever find someone thats accepts me for who i am and what i have?"..."how am i going to die?"...and then theres the thoughts about DYING..yes everybody dies but will i die from a transplant?..will i die from exaserbation?...is my heart going to give out?..my life is a never ending battle, i have learned soo much about CF, about life, about appreciating things,..i am a walking miracle...and so are all the other CF patients...and everyday we still learn about ourselves and our CF...
Just do your best to think positive and cherish what comfort we may get from talking to other CFers online and sharing our struggles and our triumphs.
Keeping my mind busy and not being alone for long periods of time rly help with anxiety and depression, its helps to stop that sinking feeling you get when you dwell on unpleasant things like death.
I used to always just think I would die first out of my friends and family,it was just a fact to me,then one of my friends was murdered and I realise then yes we live with the reality of death more closely then most people but in all reality life is precious and you dont know what going to happen,
Just stay strong for yourself but also for your family <img src="i/expressions/face-icon-small-smile.gif" border="0">
Also there are programs available where you can talk to someone if your feeling like you need an outlet,maybe that would be something that would help
take care <img src="i/expressions/face-icon-small-smile.gif" border="0">
Keeping my mind busy and not being alone for long periods of time rly help with anxiety and depression, its helps to stop that sinking feeling you get when you dwell on unpleasant things like death.
I used to always just think I would die first out of my friends and family,it was just a fact to me,then one of my friends was murdered and I realise then yes we live with the reality of death more closely then most people but in all reality life is precious and you dont know what going to happen,
Just stay strong for yourself but also for your family <img src="i/expressions/face-icon-small-smile.gif" border="0">
Also there are programs available where you can talk to someone if your feeling like you need an outlet,maybe that would be something that would help
take care <img src="i/expressions/face-icon-small-smile.gif" border="0">
Just do your best to think positive and cherish what comfort we may get from talking to other CFers online and sharing our struggles and our triumphs.
Keeping my mind busy and not being alone for long periods of time rly help with anxiety and depression, its helps to stop that sinking feeling you get when you dwell on unpleasant things like death.
I used to always just think I would die first out of my friends and family,it was just a fact to me,then one of my friends was murdered and I realise then yes we live with the reality of death more closely then most people but in all reality life is precious and you dont know what going to happen,
Just stay strong for yourself but also for your family <img src="i/expressions/face-icon-small-smile.gif" border="0">
Also there are programs available where you can talk to someone if your feeling like you need an outlet,maybe that would be something that would help
take care <img src="i/expressions/face-icon-small-smile.gif" border="0">
Keeping my mind busy and not being alone for long periods of time rly help with anxiety and depression, its helps to stop that sinking feeling you get when you dwell on unpleasant things like death.
I used to always just think I would die first out of my friends and family,it was just a fact to me,then one of my friends was murdered and I realise then yes we live with the reality of death more closely then most people but in all reality life is precious and you dont know what going to happen,
Just stay strong for yourself but also for your family <img src="i/expressions/face-icon-small-smile.gif" border="0">
Also there are programs available where you can talk to someone if your feeling like you need an outlet,maybe that would be something that would help
take care <img src="i/expressions/face-icon-small-smile.gif" border="0">
Just do your best to think positive and cherish what comfort we may get from talking to other CFers online and sharing our struggles and our triumphs.
<br />Keeping my mind busy and not being alone for long periods of time rly help with anxiety and depression, its helps to stop that sinking feeling you get when you dwell on unpleasant things like death.
<br />I used to always just think I would die first out of my friends and family,it was just a fact to me,then one of my friends was murdered and I realise then yes we live with the reality of death more closely then most people but in all reality life is precious and you dont know what going to happen,
<br />Just stay strong for yourself but also for your family <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />Also there are programs available where you can talk to someone if your feeling like you need an outlet,maybe that would be something that would help
<br />
<br />take care <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />Keeping my mind busy and not being alone for long periods of time rly help with anxiety and depression, its helps to stop that sinking feeling you get when you dwell on unpleasant things like death.
<br />I used to always just think I would die first out of my friends and family,it was just a fact to me,then one of my friends was murdered and I realise then yes we live with the reality of death more closely then most people but in all reality life is precious and you dont know what going to happen,
<br />Just stay strong for yourself but also for your family <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />Also there are programs available where you can talk to someone if your feeling like you need an outlet,maybe that would be something that would help
<br />
<br />take care <img src="i/expressions/face-icon-small-smile.gif" border="0">
Iamqueenofeverything
New member
i understand your need!! it helps to have that one or two people to KNOW what you are going through!! i have one friend who God has sent me. She has major health problems like me but not CF. regardless we just know what a health problem can bring.
back in the day, there used to be a camp for cf people until thr mrsa started causing problems. i loved going because everyone was the same. being healthy was unmormal and everyone had to do treatments. it was the only time i truely felt like i was included.
now i consdier people who truely love me and support me to build me up. they offer prayers and are willing to do anything while i am down. i encourage you to look at the pepole who truely spport asnd love you. you will be surprized that you are never alone.
still come to this website and you will automatically of THOUSANDS of friends.!!!
back in the day, there used to be a camp for cf people until thr mrsa started causing problems. i loved going because everyone was the same. being healthy was unmormal and everyone had to do treatments. it was the only time i truely felt like i was included.
now i consdier people who truely love me and support me to build me up. they offer prayers and are willing to do anything while i am down. i encourage you to look at the pepole who truely spport asnd love you. you will be surprized that you are never alone.
still come to this website and you will automatically of THOUSANDS of friends.!!!
Iamqueenofeverything
New member
i understand your need!! it helps to have that one or two people to KNOW what you are going through!! i have one friend who God has sent me. She has major health problems like me but not CF. regardless we just know what a health problem can bring.
back in the day, there used to be a camp for cf people until thr mrsa started causing problems. i loved going because everyone was the same. being healthy was unmormal and everyone had to do treatments. it was the only time i truely felt like i was included.
now i consdier people who truely love me and support me to build me up. they offer prayers and are willing to do anything while i am down. i encourage you to look at the pepole who truely spport asnd love you. you will be surprized that you are never alone.
still come to this website and you will automatically of THOUSANDS of friends.!!!
back in the day, there used to be a camp for cf people until thr mrsa started causing problems. i loved going because everyone was the same. being healthy was unmormal and everyone had to do treatments. it was the only time i truely felt like i was included.
now i consdier people who truely love me and support me to build me up. they offer prayers and are willing to do anything while i am down. i encourage you to look at the pepole who truely spport asnd love you. you will be surprized that you are never alone.
still come to this website and you will automatically of THOUSANDS of friends.!!!
Iamqueenofeverything
New member
i understand your need!! it helps to have that one or two people to KNOW what you are going through!! i have one friend who God has sent me. She has major health problems like me but not CF. regardless we just know what a health problem can bring.
<br />
<br />back in the day, there used to be a camp for cf people until thr mrsa started causing problems. i loved going because everyone was the same. being healthy was unmormal and everyone had to do treatments. it was the only time i truely felt like i was included.
<br />
<br />now i consdier people who truely love me and support me to build me up. they offer prayers and are willing to do anything while i am down. i encourage you to look at the pepole who truely spport asnd love you. you will be surprized that you are never alone.
<br />
<br />still come to this website and you will automatically of THOUSANDS of friends.!!!
<br />
<br />back in the day, there used to be a camp for cf people until thr mrsa started causing problems. i loved going because everyone was the same. being healthy was unmormal and everyone had to do treatments. it was the only time i truely felt like i was included.
<br />
<br />now i consdier people who truely love me and support me to build me up. they offer prayers and are willing to do anything while i am down. i encourage you to look at the pepole who truely spport asnd love you. you will be surprized that you are never alone.
<br />
<br />still come to this website and you will automatically of THOUSANDS of friends.!!!
M
mah
Guest
I don't know if this post will help, but if it's any consolation, I know what you mean. I am 30, and have gotten used to a life where every time I breathe in, it hurts and it's a battle to stay "this healthy" (meaning on 02 and pretty much sick all the time). I have alot of community support when I get sick...but with friends who aren't sick (or even with ones who are, that haven't been through the part of sick life where the question isn't "when do i need to go in?" but a more unpredictable "what body system is acting up NOW and HOW is that happening???")...I feel like the friend who ppl go and do volunteer work with, that for some ppl (not everyone and plz don't think i am ungrateful, b/c i really am)...but i'm the friend that ppl use to feel good about themselves b/c they can come and help out. it just hurts that when i'm not sick, i'm kind of an afterthought...and trying to make the best of this is simply very difficult.
all i can say is hang in there...if u can have a pet, they do help. journaling about things that you think are wonderful does help, as does simply acknowledging any other feelings you may be having. here's a *hug* for when you need on.
all i can say is hang in there...if u can have a pet, they do help. journaling about things that you think are wonderful does help, as does simply acknowledging any other feelings you may be having. here's a *hug* for when you need on.
M
mah
Guest
I don't know if this post will help, but if it's any consolation, I know what you mean. I am 30, and have gotten used to a life where every time I breathe in, it hurts and it's a battle to stay "this healthy" (meaning on 02 and pretty much sick all the time). I have alot of community support when I get sick...but with friends who aren't sick (or even with ones who are, that haven't been through the part of sick life where the question isn't "when do i need to go in?" but a more unpredictable "what body system is acting up NOW and HOW is that happening???")...I feel like the friend who ppl go and do volunteer work with, that for some ppl (not everyone and plz don't think i am ungrateful, b/c i really am)...but i'm the friend that ppl use to feel good about themselves b/c they can come and help out. it just hurts that when i'm not sick, i'm kind of an afterthought...and trying to make the best of this is simply very difficult.
all i can say is hang in there...if u can have a pet, they do help. journaling about things that you think are wonderful does help, as does simply acknowledging any other feelings you may be having. here's a *hug* for when you need on.
all i can say is hang in there...if u can have a pet, they do help. journaling about things that you think are wonderful does help, as does simply acknowledging any other feelings you may be having. here's a *hug* for when you need on.
M
mah
Guest
I don't know if this post will help, but if it's any consolation, I know what you mean. I am 30, and have gotten used to a life where every time I breathe in, it hurts and it's a battle to stay "this healthy" (meaning on 02 and pretty much sick all the time). I have alot of community support when I get sick...but with friends who aren't sick (or even with ones who are, that haven't been through the part of sick life where the question isn't "when do i need to go in?" but a more unpredictable "what body system is acting up NOW and HOW is that happening???")...I feel like the friend who ppl go and do volunteer work with, that for some ppl (not everyone and plz don't think i am ungrateful, b/c i really am)...but i'm the friend that ppl use to feel good about themselves b/c they can come and help out. it just hurts that when i'm not sick, i'm kind of an afterthought...and trying to make the best of this is simply very difficult.
<br />all i can say is hang in there...if u can have a pet, they do help. journaling about things that you think are wonderful does help, as does simply acknowledging any other feelings you may be having. here's a *hug* for when you need on.
<br />all i can say is hang in there...if u can have a pet, they do help. journaling about things that you think are wonderful does help, as does simply acknowledging any other feelings you may be having. here's a *hug* for when you need on.
I think many of us have had many fears like you have described .. It can be overwhelming..
For me , having Christ in my life has been so comforting.. I also have had therapy (was going through a really hard time about dying after kidney failure) , medication at one point.. I also have a good support system , great family & friends & of course CF.com has been a tremendous help for me..
Take care & God Bless <img src="i/expressions/heart.gif" border="0"> joni
For me , having Christ in my life has been so comforting.. I also have had therapy (was going through a really hard time about dying after kidney failure) , medication at one point.. I also have a good support system , great family & friends & of course CF.com has been a tremendous help for me..
Take care & God Bless <img src="i/expressions/heart.gif" border="0"> joni
I think many of us have had many fears like you have described .. It can be overwhelming..
For me , having Christ in my life has been so comforting.. I also have had therapy (was going through a really hard time about dying after kidney failure) , medication at one point.. I also have a good support system , great family & friends & of course CF.com has been a tremendous help for me..
Take care & God Bless <img src="i/expressions/heart.gif" border="0"> joni
For me , having Christ in my life has been so comforting.. I also have had therapy (was going through a really hard time about dying after kidney failure) , medication at one point.. I also have a good support system , great family & friends & of course CF.com has been a tremendous help for me..
Take care & God Bless <img src="i/expressions/heart.gif" border="0"> joni
I think many of us have had many fears like you have described .. It can be overwhelming..
<br />
<br /> For me , having Christ in my life has been so comforting.. I also have had therapy (was going through a really hard time about dying after kidney failure) , medication at one point.. I also have a good support system , great family & friends & of course CF.com has been a tremendous help for me..
<br />
<br />Take care & God Bless <img src="i/expressions/heart.gif" border="0"> joni
<br />
<br /> For me , having Christ in my life has been so comforting.. I also have had therapy (was going through a really hard time about dying after kidney failure) , medication at one point.. I also have a good support system , great family & friends & of course CF.com has been a tremendous help for me..
<br />
<br />Take care & God Bless <img src="i/expressions/heart.gif" border="0"> joni
Twistofchaos
New member
When I feel alone, first of all I listen to music, as a metalhead and classical music fan (but not so much anything in between) there's a lot of music that comforts me there and makes me feel not so alone. In that way cheerful positive things can make me depressed, but dark things can pick me up as they comfort me..
Reading, a nice grumpy philosophical book about how humanity sucks also works wonders.. It helps me stay confident that it's not me..it's them.
Going out into nature, doing sciency things and for me putting my telescope out my backdoor on a clear night really helps me feel more at rest in my mind as it relativates everything that goes on here and puts it in the propper perspective. Makes me feel part of the whole thing, it'll all go on what happens here anyway and just appreciate being here and not worry so much. Not about my health, not about other people's ego's, not about my accomplishments and what others think of me but focus on what >I< want to do and accept things as they are.
Even though I've become quite an introverted person that appreciates being left alone more often than not, some days are easier than others..
Reading, a nice grumpy philosophical book about how humanity sucks also works wonders.. It helps me stay confident that it's not me..it's them.
Going out into nature, doing sciency things and for me putting my telescope out my backdoor on a clear night really helps me feel more at rest in my mind as it relativates everything that goes on here and puts it in the propper perspective. Makes me feel part of the whole thing, it'll all go on what happens here anyway and just appreciate being here and not worry so much. Not about my health, not about other people's ego's, not about my accomplishments and what others think of me but focus on what >I< want to do and accept things as they are.
Even though I've become quite an introverted person that appreciates being left alone more often than not, some days are easier than others..
Twistofchaos
New member
When I feel alone, first of all I listen to music, as a metalhead and classical music fan (but not so much anything in between) there's a lot of music that comforts me there and makes me feel not so alone. In that way cheerful positive things can make me depressed, but dark things can pick me up as they comfort me..
Reading, a nice grumpy philosophical book about how humanity sucks also works wonders.. It helps me stay confident that it's not me..it's them.
Going out into nature, doing sciency things and for me putting my telescope out my backdoor on a clear night really helps me feel more at rest in my mind as it relativates everything that goes on here and puts it in the propper perspective. Makes me feel part of the whole thing, it'll all go on what happens here anyway and just appreciate being here and not worry so much. Not about my health, not about other people's ego's, not about my accomplishments and what others think of me but focus on what >I< want to do and accept things as they are.
Even though I've become quite an introverted person that appreciates being left alone more often than not, some days are easier than others..
Reading, a nice grumpy philosophical book about how humanity sucks also works wonders.. It helps me stay confident that it's not me..it's them.
Going out into nature, doing sciency things and for me putting my telescope out my backdoor on a clear night really helps me feel more at rest in my mind as it relativates everything that goes on here and puts it in the propper perspective. Makes me feel part of the whole thing, it'll all go on what happens here anyway and just appreciate being here and not worry so much. Not about my health, not about other people's ego's, not about my accomplishments and what others think of me but focus on what >I< want to do and accept things as they are.
Even though I've become quite an introverted person that appreciates being left alone more often than not, some days are easier than others..
Twistofchaos
New member
When I feel alone, first of all I listen to music, as a metalhead and classical music fan (but not so much anything in between) there's a lot of music that comforts me there and makes me feel not so alone. In that way cheerful positive things can make me depressed, but dark things can pick me up as they comfort me..
<br />Reading, a nice grumpy philosophical book about how humanity sucks also works wonders.. It helps me stay confident that it's not me..it's them.
<br />
<br />Going out into nature, doing sciency things and for me putting my telescope out my backdoor on a clear night really helps me feel more at rest in my mind as it relativates everything that goes on here and puts it in the propper perspective. Makes me feel part of the whole thing, it'll all go on what happens here anyway and just appreciate being here and not worry so much. Not about my health, not about other people's ego's, not about my accomplishments and what others think of me but focus on what >I< want to do and accept things as they are.
<br />
<br />Even though I've become quite an introverted person that appreciates being left alone more often than not, some days are easier than others..
<br />Reading, a nice grumpy philosophical book about how humanity sucks also works wonders.. It helps me stay confident that it's not me..it's them.
<br />
<br />Going out into nature, doing sciency things and for me putting my telescope out my backdoor on a clear night really helps me feel more at rest in my mind as it relativates everything that goes on here and puts it in the propper perspective. Makes me feel part of the whole thing, it'll all go on what happens here anyway and just appreciate being here and not worry so much. Not about my health, not about other people's ego's, not about my accomplishments and what others think of me but focus on what >I< want to do and accept things as they are.
<br />
<br />Even though I've become quite an introverted person that appreciates being left alone more often than not, some days are easier than others..