Thinking obsessively about cf

[nocode]

Hey everyone..
As the title says, i have always been obsessed with my illness, it seems like there isn't one day that goes by when i'm not thinking obsessively about it, i can't seem to make it go away, as a consequence of focusing so much on my breathes etc, i sometimes feel i can barely breathe and worry too much whether i'm getting worse by the minute! I'm always waiting for something to happen, always wondering when i'm gonna get worse and just not being able to live a day at a time.
My case isn't too bad. I'm 23, never need iv's, don't have pancreatic insufficiency, but my lungs aren't great. I've never needed oxygen either but i do cough more often than not (let's say i cough for about 20% of my day, sometimes less,sometimes more) it's hard to evaluate really. But basically, this info i gave you is to give you a rough idea of how my state is and how much i overthink it!
Do you guys feel the same or are you able to ignore it (relatively of course) and not think about it for most of the time?
Do you think i could, sometimes, think that i'm getting worse as a consequence of my thinking so much about it, when the truth could be that i'm always stable?

Another question is: do you think your illness has shaped your personality for the most part? I definatelly think i am a very different person compared to most(healthy people) , so psychologically unstable , because of the cf. I think i'd be a lovely person otherwise, like i was until i was diagnosed (age 15).

Thanks, in advance, for your answers!

Vera, 23, Portugal

 

[nocode]

Hey everyone..
As the title says, i have always been obsessed with my illness, it seems like there isn't one day that goes by when i'm not thinking obsessively about it, i can't seem to make it go away, as a consequence of focusing so much on my breathes etc, i sometimes feel i can barely breathe and worry too much whether i'm getting worse by the minute! I'm always waiting for something to happen, always wondering when i'm gonna get worse and just not being able to live a day at a time.
My case isn't too bad. I'm 23, never need iv's, don't have pancreatic insufficiency, but my lungs aren't great. I've never needed oxygen either but i do cough more often than not (let's say i cough for about 20% of my day, sometimes less,sometimes more) it's hard to evaluate really. But basically, this info i gave you is to give you a rough idea of how my state is and how much i overthink it!
Do you guys feel the same or are you able to ignore it (relatively of course) and not think about it for most of the time?
Do you think i could, sometimes, think that i'm getting worse as a consequence of my thinking so much about it, when the truth could be that i'm always stable?

Another question is: do you think your illness has shaped your personality for the most part? I definatelly think i am a very different person compared to most(healthy people) , so psychologically unstable , because of the cf. I think i'd be a lovely person otherwise, like i was until i was diagnosed (age 15).

Thanks, in advance, for your answers!

Vera, 23, Portugal

 

[nocode]

Hey everyone..
As the title says, i have always been obsessed with my illness, it seems like there isn't one day that goes by when i'm not thinking obsessively about it, i can't seem to make it go away, as a consequence of focusing so much on my breathes etc, i sometimes feel i can barely breathe and worry too much whether i'm getting worse by the minute! I'm always waiting for something to happen, always wondering when i'm gonna get worse and just not being able to live a day at a time.
My case isn't too bad. I'm 23, never need iv's, don't have pancreatic insufficiency, but my lungs aren't great. I've never needed oxygen either but i do cough more often than not (let's say i cough for about 20% of my day, sometimes less,sometimes more) it's hard to evaluate really. But basically, this info i gave you is to give you a rough idea of how my state is and how much i overthink it!
Do you guys feel the same or are you able to ignore it (relatively of course) and not think about it for most of the time?
Do you think i could, sometimes, think that i'm getting worse as a consequence of my thinking so much about it, when the truth could be that i'm always stable?

Another question is: do you think your illness has shaped your personality for the most part? I definatelly think i am a very different person compared to most(healthy people) , so psychologically unstable , because of the cf. I think i'd be a lovely person otherwise, like i was until i was diagnosed (age 15).

Thanks, in advance, for your answers!

Vera, 23, Portugal

 

[southbound]

It's still really weird to read posts like these, because I can relate so much. I'm always thinking that there is no one who could possibly understand how I am feeling on a day to day basis. I obesess about this as well. I feel like there isn't a 10 minute period that goes by that CF doesn't enter my brain. Whether it's every single time I cough, or take a breath that just doesn't feel right. I don't think you're going to get worse physically simply by overthinking, but you can definitely hurt yourself mentally. The illness has shaped my personality in both good and bad ways. I consider myself a great person, but I'm definitely flawed because of this disease. My self-confidence, my trust, etc. I am mentally unstable because of it. I'm currently on Lexapro to help curb my obsessive thoughts about being sick, but I still have pretty bad anxiety over it. It's tough. I have an amazingly supportive group of friends, but it's still an incredibly tricky thing to grasp. I'm 26 now; was diagnosed at a pivotal time (at 14, during the summer of my transition into High School) in my life, and I feel like it fucked me up royally. I guess I don't really have any advice to share or answers to give. I just wanted to let you know that there are many of us out there who are totally lost and confused and grasping for something..

 

[southbound]

It's still really weird to read posts like these, because I can relate so much. I'm always thinking that there is no one who could possibly understand how I am feeling on a day to day basis. I obesess about this as well. I feel like there isn't a 10 minute period that goes by that CF doesn't enter my brain. Whether it's every single time I cough, or take a breath that just doesn't feel right. I don't think you're going to get worse physically simply by overthinking, but you can definitely hurt yourself mentally. The illness has shaped my personality in both good and bad ways. I consider myself a great person, but I'm definitely flawed because of this disease. My self-confidence, my trust, etc. I am mentally unstable because of it. I'm currently on Lexapro to help curb my obsessive thoughts about being sick, but I still have pretty bad anxiety over it. It's tough. I have an amazingly supportive group of friends, but it's still an incredibly tricky thing to grasp. I'm 26 now; was diagnosed at a pivotal time (at 14, during the summer of my transition into High School) in my life, and I feel like it fucked me up royally. I guess I don't really have any advice to share or answers to give. I just wanted to let you know that there are many of us out there who are totally lost and confused and grasping for something..

 

[southbound]

It's still really weird to read posts like these, because I can relate so much. I'm always thinking that there is no one who could possibly understand how I am feeling on a day to day basis. I obesess about this as well. I feel like there isn't a 10 minute period that goes by that CF doesn't enter my brain. Whether it's every single time I cough, or take a breath that just doesn't feel right. I don't think you're going to get worse physically simply by overthinking, but you can definitely hurt yourself mentally. The illness has shaped my personality in both good and bad ways. I consider myself a great person, but I'm definitely flawed because of this disease. My self-confidence, my trust, etc. I am mentally unstable because of it. I'm currently on Lexapro to help curb my obsessive thoughts about being sick, but I still have pretty bad anxiety over it. It's tough. I have an amazingly supportive group of friends, but it's still an incredibly tricky thing to grasp. I'm 26 now; was diagnosed at a pivotal time (at 14, during the summer of my transition into High School) in my life, and I feel like it fucked me up royally. I guess I don't really have any advice to share or answers to give. I just wanted to let you know that there are many of us out there who are totally lost and confused and grasping for something..

 

[nocode]

Ok so we have another thing in common, we were both diagnosed at ages that made it even worse to accept it. I definatelly feel that 15 was a terrible time to be diagnosed with such an illness, i was also starting highschool, it was in September and as i found out that i had a shorter life expectancy everything changed, i know, there is no good time to be diagnosed with this, but it can be really tricky to deal with it for the 1st time during our teenage years.
And yes, everything that you wrote is exactly the way i feel. I just read another topic (i only found it after i posted this one) where a lot of people talk about the way they deal with this illness, and most of them seem to be pretty positive. I was actually surprised. I thought a lot more people thought like me. But deep deep down i 've got to admit that i ,too (like a few people on the other topic) believe that those bad things that happen to people with cf won't happen to me. Now this is what i call denial..

 

[nocode]

Ok so we have another thing in common, we were both diagnosed at ages that made it even worse to accept it. I definatelly feel that 15 was a terrible time to be diagnosed with such an illness, i was also starting highschool, it was in September and as i found out that i had a shorter life expectancy everything changed, i know, there is no good time to be diagnosed with this, but it can be really tricky to deal with it for the 1st time during our teenage years.
And yes, everything that you wrote is exactly the way i feel. I just read another topic (i only found it after i posted this one) where a lot of people talk about the way they deal with this illness, and most of them seem to be pretty positive. I was actually surprised. I thought a lot more people thought like me. But deep deep down i 've got to admit that i ,too (like a few people on the other topic) believe that those bad things that happen to people with cf won't happen to me. Now this is what i call denial..

 

[nocode]

Ok so we have another thing in common, we were both diagnosed at ages that made it even worse to accept it. I definatelly feel that 15 was a terrible time to be diagnosed with such an illness, i was also starting highschool, it was in September and as i found out that i had a shorter life expectancy everything changed, i know, there is no good time to be diagnosed with this, but it can be really tricky to deal with it for the 1st time during our teenage years.
And yes, everything that you wrote is exactly the way i feel. I just read another topic (i only found it after i posted this one) where a lot of people talk about the way they deal with this illness, and most of them seem to be pretty positive. I was actually surprised. I thought a lot more people thought like me. But deep deep down i 've got to admit that i ,too (like a few people on the other topic) believe that those bad things that happen to people with cf won't happen to me. Now this is what i call denial..

 

[ladybug]

I can relate and was diagnosed at 5 months.... Basically, I feel I am thinking about CF more and more as I age. I do worry about getting sicker. I do worry that every day that I feel a little more short of breath I must be getting "worse". I also find myself becoming more and more cynical about listening to other people's problems.... I used to feel bad when people complained about their colds, and still I do feel for them, but now I always find myself thinking... Wow, try living with CF for a week! I don't know what has made this change in me, and I don't know if I call it obsessing. Maybe its that I've seen more and more people die of CF the older we get and it makes it more real for me... plus, I don't want to listen to others complain about their cold when someone on these boards who was really stuggling with CF has just passed away. Its almost an anger.... Like people aren't allowed to sulk unless they've experienced what "I" or other CFers have...

Yet, I don't sulk... I try not to let it overwhelm me, and do try to live my life as normally and fully as I can. I live, love and experience as much as I can.. I try to meet interesting people and go interesting places.... I LIVE as much as I can....

Though, CF is always there in the back... it seems its always on the surface... I'm always planning trips based on how easy it will be to take and do treatments, I'm planning evenings out around treatments, I'm sleeping in and missing the mornings cause I find I breath better if I wake up later in the morning (weird)... Its hard to NOT let such thoughts enter your head when so much of our lives is in a sense "governed" by this disease... You MUST eat 4000 calories, you MUST do your treatments every day, you MUST take these medications before those and do them this often, you MUST get good rest, you MUST exercise, you MUST wash your hands or you may get a resistant bacteria that will land you in the hospital... etc. etc.... I think its virtually "beaten" into us that we MUST think of CF nearly every minute of the day. So, its only natural to obsess about it. Its only natural that when we reach for a snack we reach for the one that has the most fat for our CF, we stay away from sick friends and family members, though we'd love to visit them (because it may land us in the hospital).... etc. etc...

I think you "obsessing" over CF is a natural response to how we're brought up. I also think with regard to wondering constantly if "I'm getting worse", this is also what has been reiterated to us over and over. If we see even a 2% drop in FEV1 or test results or more shortness of breath, it lands us in the hospital... I mean, who WOULDN"T be terrified of every "oddity" that arose if because of that one may end up in the hospital for weeks?! I don't know anyone who could face that without a little bit of obsession and fear on occasion.

So, please know your thoughts are normal. We can look at this disease positively in that we're going to "live life" to the fullest, but in the same respect, we cannot "turn off" the part of our brain that remembers we have CF. So, I think it is finding a balance and not allowing the obsessing to rule our life, but instead to allow the obsessing to keep us healthy. That's just my opinion though. Just know you're NOT alone at all. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

I can relate and was diagnosed at 5 months.... Basically, I feel I am thinking about CF more and more as I age. I do worry about getting sicker. I do worry that every day that I feel a little more short of breath I must be getting "worse". I also find myself becoming more and more cynical about listening to other people's problems.... I used to feel bad when people complained about their colds, and still I do feel for them, but now I always find myself thinking... Wow, try living with CF for a week! I don't know what has made this change in me, and I don't know if I call it obsessing. Maybe its that I've seen more and more people die of CF the older we get and it makes it more real for me... plus, I don't want to listen to others complain about their cold when someone on these boards who was really stuggling with CF has just passed away. Its almost an anger.... Like people aren't allowed to sulk unless they've experienced what "I" or other CFers have...

Yet, I don't sulk... I try not to let it overwhelm me, and do try to live my life as normally and fully as I can. I live, love and experience as much as I can.. I try to meet interesting people and go interesting places.... I LIVE as much as I can....

Though, CF is always there in the back... it seems its always on the surface... I'm always planning trips based on how easy it will be to take and do treatments, I'm planning evenings out around treatments, I'm sleeping in and missing the mornings cause I find I breath better if I wake up later in the morning (weird)... Its hard to NOT let such thoughts enter your head when so much of our lives is in a sense "governed" by this disease... You MUST eat 4000 calories, you MUST do your treatments every day, you MUST take these medications before those and do them this often, you MUST get good rest, you MUST exercise, you MUST wash your hands or you may get a resistant bacteria that will land you in the hospital... etc. etc.... I think its virtually "beaten" into us that we MUST think of CF nearly every minute of the day. So, its only natural to obsess about it. Its only natural that when we reach for a snack we reach for the one that has the most fat for our CF, we stay away from sick friends and family members, though we'd love to visit them (because it may land us in the hospital).... etc. etc...

I think you "obsessing" over CF is a natural response to how we're brought up. I also think with regard to wondering constantly if "I'm getting worse", this is also what has been reiterated to us over and over. If we see even a 2% drop in FEV1 or test results or more shortness of breath, it lands us in the hospital... I mean, who WOULDN"T be terrified of every "oddity" that arose if because of that one may end up in the hospital for weeks?! I don't know anyone who could face that without a little bit of obsession and fear on occasion.

So, please know your thoughts are normal. We can look at this disease positively in that we're going to "live life" to the fullest, but in the same respect, we cannot "turn off" the part of our brain that remembers we have CF. So, I think it is finding a balance and not allowing the obsessing to rule our life, but instead to allow the obsessing to keep us healthy. That's just my opinion though. Just know you're NOT alone at all. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

I can relate and was diagnosed at 5 months.... Basically, I feel I am thinking about CF more and more as I age. I do worry about getting sicker. I do worry that every day that I feel a little more short of breath I must be getting "worse". I also find myself becoming more and more cynical about listening to other people's problems.... I used to feel bad when people complained about their colds, and still I do feel for them, but now I always find myself thinking... Wow, try living with CF for a week! I don't know what has made this change in me, and I don't know if I call it obsessing. Maybe its that I've seen more and more people die of CF the older we get and it makes it more real for me... plus, I don't want to listen to others complain about their cold when someone on these boards who was really stuggling with CF has just passed away. Its almost an anger.... Like people aren't allowed to sulk unless they've experienced what "I" or other CFers have...

Yet, I don't sulk... I try not to let it overwhelm me, and do try to live my life as normally and fully as I can. I live, love and experience as much as I can.. I try to meet interesting people and go interesting places.... I LIVE as much as I can....

Though, CF is always there in the back... it seems its always on the surface... I'm always planning trips based on how easy it will be to take and do treatments, I'm planning evenings out around treatments, I'm sleeping in and missing the mornings cause I find I breath better if I wake up later in the morning (weird)... Its hard to NOT let such thoughts enter your head when so much of our lives is in a sense "governed" by this disease... You MUST eat 4000 calories, you MUST do your treatments every day, you MUST take these medications before those and do them this often, you MUST get good rest, you MUST exercise, you MUST wash your hands or you may get a resistant bacteria that will land you in the hospital... etc. etc.... I think its virtually "beaten" into us that we MUST think of CF nearly every minute of the day. So, its only natural to obsess about it. Its only natural that when we reach for a snack we reach for the one that has the most fat for our CF, we stay away from sick friends and family members, though we'd love to visit them (because it may land us in the hospital).... etc. etc...

I think you "obsessing" over CF is a natural response to how we're brought up. I also think with regard to wondering constantly if "I'm getting worse", this is also what has been reiterated to us over and over. If we see even a 2% drop in FEV1 or test results or more shortness of breath, it lands us in the hospital... I mean, who WOULDN"T be terrified of every "oddity" that arose if because of that one may end up in the hospital for weeks?! I don't know anyone who could face that without a little bit of obsession and fear on occasion.

So, please know your thoughts are normal. We can look at this disease positively in that we're going to "live life" to the fullest, but in the same respect, we cannot "turn off" the part of our brain that remembers we have CF. So, I think it is finding a balance and not allowing the obsessing to rule our life, but instead to allow the obsessing to keep us healthy. That's just my opinion though. Just know you're NOT alone at all. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Pumuckl]

I guess I am quite the opposite as I do not find myself thinking about CF unless there is a particular problem relating to it that I need to address.

I do not consider myself being in denial or anything like that I am perfectly aware of the illness that I have, but I guess at some point I have chosen to live my life and not allow it (CF) to consume me.

I can understand your concerns no one wants to be sick and no one wants to be told that they have an illness that may eventually take their life. However stress is a very harmful critter and your worries can translate into poorer health. At least from my experience I know that when I stress my CF symptoms increase.

My suggestion would be to try things to take away your focus on your health perhaps talk to a counselor etc as well. Focus on your life on living it and enjoying it... make the best of today <img src="i/expressions/face-icon-small-smile.gif" border="0">.

Good Luck to you and good health.

 

[Pumuckl]

I guess I am quite the opposite as I do not find myself thinking about CF unless there is a particular problem relating to it that I need to address.

I do not consider myself being in denial or anything like that I am perfectly aware of the illness that I have, but I guess at some point I have chosen to live my life and not allow it (CF) to consume me.

I can understand your concerns no one wants to be sick and no one wants to be told that they have an illness that may eventually take their life. However stress is a very harmful critter and your worries can translate into poorer health. At least from my experience I know that when I stress my CF symptoms increase.

My suggestion would be to try things to take away your focus on your health perhaps talk to a counselor etc as well. Focus on your life on living it and enjoying it... make the best of today <img src="i/expressions/face-icon-small-smile.gif" border="0">.

Good Luck to you and good health.

 

[Pumuckl]

I guess I am quite the opposite as I do not find myself thinking about CF unless there is a particular problem relating to it that I need to address.

I do not consider myself being in denial or anything like that I am perfectly aware of the illness that I have, but I guess at some point I have chosen to live my life and not allow it (CF) to consume me.

I can understand your concerns no one wants to be sick and no one wants to be told that they have an illness that may eventually take their life. However stress is a very harmful critter and your worries can translate into poorer health. At least from my experience I know that when I stress my CF symptoms increase.

My suggestion would be to try things to take away your focus on your health perhaps talk to a counselor etc as well. Focus on your life on living it and enjoying it... make the best of today <img src="i/expressions/face-icon-small-smile.gif" border="0">.

Good Luck to you and good health.

 

[chrissyd]

I was diagnosed at 21. I got the call while on my honeymoon...I am 29 and I still think about my CF everyday. I don't consider it to be obsessive...It is such a huge part of my life.
Somedays I think mre about it than others, like I said not a day goes by...
I have other illnesses also, mitochondrial mutations, leaky valve in my heart, and a blood clotting problem.
It's a part of me. All of them are, and to ignore them would almost by like trying to hide who I am. I'm not sure if this even makes any sense what so ever.



Just ignore me <img src="i/expressions/face-icon-small-happy.gif" border="0">

Chrissy

 

[chrissyd]

I was diagnosed at 21. I got the call while on my honeymoon...I am 29 and I still think about my CF everyday. I don't consider it to be obsessive...It is such a huge part of my life.
Somedays I think mre about it than others, like I said not a day goes by...
I have other illnesses also, mitochondrial mutations, leaky valve in my heart, and a blood clotting problem.
It's a part of me. All of them are, and to ignore them would almost by like trying to hide who I am. I'm not sure if this even makes any sense what so ever.



Just ignore me <img src="i/expressions/face-icon-small-happy.gif" border="0">

Chrissy

 

[chrissyd]

I was diagnosed at 21. I got the call while on my honeymoon...I am 29 and I still think about my CF everyday. I don't consider it to be obsessive...It is such a huge part of my life.
Somedays I think mre about it than others, like I said not a day goes by...
I have other illnesses also, mitochondrial mutations, leaky valve in my heart, and a blood clotting problem.
It's a part of me. All of them are, and to ignore them would almost by like trying to hide who I am. I'm not sure if this even makes any sense what so ever.



Just ignore me <img src="i/expressions/face-icon-small-happy.gif" border="0">

Chrissy

 

[NoExcuses]

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

Hey everyone..

As the title says, i have always been obsessed with my illness, it seems like there isn't one day that goes by when i'm not thinking obsessively about it, i can't seem to make it go away, as a consequence of focusing so much on my breathes etc, i sometimes feel i can barely breathe and worry too much whether i'm getting worse by the minute! I'm always waiting for something to happen, always wondering when i'm gonna get worse and just not being able to live a day at a time.
</end quote></div>

Hi Vera,

I think you have class seratonin defficiency symptoms. Stress from an illness can prevent your body from correctly utilizing the seratonin it produces and the result is worried thoughts like you've mentioned.

The unfortunate thing is that I know Europe sigmatizes depression more than the the US does. And as a result, you might be more hesitant to seek help from a Psych.

But what's occuring is a chemical process - something you have no control over because you have a chronic illness that puts a great deal of stress on your body.

A Selective Seratonin Rebutake Inhibator (SSRI) would help your body become more receptive to the seratonin that it naturally produces.

I hope you find answers. It's no fun to suffer needlessly.

 

[NoExcuses]

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

Hey everyone..

As the title says, i have always been obsessed with my illness, it seems like there isn't one day that goes by when i'm not thinking obsessively about it, i can't seem to make it go away, as a consequence of focusing so much on my breathes etc, i sometimes feel i can barely breathe and worry too much whether i'm getting worse by the minute! I'm always waiting for something to happen, always wondering when i'm gonna get worse and just not being able to live a day at a time.
</end quote></div>

Hi Vera,

I think you have class seratonin defficiency symptoms. Stress from an illness can prevent your body from correctly utilizing the seratonin it produces and the result is worried thoughts like you've mentioned.

The unfortunate thing is that I know Europe sigmatizes depression more than the the US does. And as a result, you might be more hesitant to seek help from a Psych.

But what's occuring is a chemical process - something you have no control over because you have a chronic illness that puts a great deal of stress on your body.

A Selective Seratonin Rebutake Inhibator (SSRI) would help your body become more receptive to the seratonin that it naturally produces.

I hope you find answers. It's no fun to suffer needlessly.