Do you put up with it for the sake of putting up with it?

hwilson19 · Oct 31, 2009

So its 4am in the morning just been sick for the third time, stopped the infusion of bronchdilators as its them making me sick and crabby. I'm back in hospital for the 8th time in 6 months, lung function has gone dramatically down over the last 3 years. I'm 18 suppose to be doing my degree, my job and still haven't managed to pass my driving test yet! Everything is on hold, life is on hold, I'm just 'functioning' atm, I'm not depressed just fed up of my health, I love my life in general just haven't had one since April, I had like 2/3 years worth of IVs in 6 months, I usually last 3-5 months without now its every other week or every month. My doc was a bit concered as I'm not one to complain, what I mean by that is I don't let on as much as I do, I just don't want to be seen as a fuss and just put up with it, like pain and side effects of treatment. He said I seemed 'troubled', which to some degree I am, I just don't know how to express it or explain, its like there are no words for it to make any sense. I'm also worried bout my Mum, she's my rock, my world and I wouldn't be here without her, I don't like her to worry bout me so I put up with it, trouble is she can read me like a book sometimes. Though I never rant or let it out when I have bad news or no improvement which she would like me too sometimes as it may be written all over my face but I won't express it with emotion sometimes, as I feel as if its the way it has to be. Anyway that my rant, I would like to say more but I'm knackered bt I've realised that in writing this it helps so maybe that's what I need to do, write it down.

Hannah 18 w/cf

hwilson19 · Oct 31, 2009

So its 4am in the morning just been sick for the third time, stopped the infusion of bronchdilators as its them making me sick and crabby. I'm back in hospital for the 8th time in 6 months, lung function has gone dramatically down over the last 3 years. I'm 18 suppose to be doing my degree, my job and still haven't managed to pass my driving test yet! Everything is on hold, life is on hold, I'm just 'functioning' atm, I'm not depressed just fed up of my health, I love my life in general just haven't had one since April, I had like 2/3 years worth of IVs in 6 months, I usually last 3-5 months without now its every other week or every month. My doc was a bit concered as I'm not one to complain, what I mean by that is I don't let on as much as I do, I just don't want to be seen as a fuss and just put up with it, like pain and side effects of treatment. He said I seemed 'troubled', which to some degree I am, I just don't know how to express it or explain, its like there are no words for it to make any sense. I'm also worried bout my Mum, she's my rock, my world and I wouldn't be here without her, I don't like her to worry bout me so I put up with it, trouble is she can read me like a book sometimes. Though I never rant or let it out when I have bad news or no improvement which she would like me too sometimes as it may be written all over my face but I won't express it with emotion sometimes, as I feel as if its the way it has to be. Anyway that my rant, I would like to say more but I'm knackered bt I've realised that in writing this it helps so maybe that's what I need to do, write it down.

Hannah 18 w/cf

hwilson19 · Oct 31, 2009

So its 4am in the morning just been sick for the third time, stopped the infusion of bronchdilators as its them making me sick and crabby. I'm back in hospital for the 8th time in 6 months, lung function has gone dramatically down over the last 3 years. I'm 18 suppose to be doing my degree, my job and still haven't managed to pass my driving test yet! Everything is on hold, life is on hold, I'm just 'functioning' atm, I'm not depressed just fed up of my health, I love my life in general just haven't had one since April, I had like 2/3 years worth of IVs in 6 months, I usually last 3-5 months without now its every other week or every month. My doc was a bit concered as I'm not one to complain, what I mean by that is I don't let on as much as I do, I just don't want to be seen as a fuss and just put up with it, like pain and side effects of treatment. He said I seemed 'troubled', which to some degree I am, I just don't know how to express it or explain, its like there are no words for it to make any sense. I'm also worried bout my Mum, she's my rock, my world and I wouldn't be here without her, I don't like her to worry bout me so I put up with it, trouble is she can read me like a book sometimes. Though I never rant or let it out when I have bad news or no improvement which she would like me too sometimes as it may be written all over my face but I won't express it with emotion sometimes, as I feel as if its the way it has to be. Anyway that my rant, I would like to say more but I'm knackered bt I've realised that in writing this it helps so maybe that's what I need to do, write it down.

Hannah 18 w/cf

hwilson19 · Oct 31, 2009

So its 4am in the morning just been sick for the third time, stopped the infusion of bronchdilators as its them making me sick and crabby. I'm back in hospital for the 8th time in 6 months, lung function has gone dramatically down over the last 3 years. I'm 18 suppose to be doing my degree, my job and still haven't managed to pass my driving test yet! Everything is on hold, life is on hold, I'm just 'functioning' atm, I'm not depressed just fed up of my health, I love my life in general just haven't had one since April, I had like 2/3 years worth of IVs in 6 months, I usually last 3-5 months without now its every other week or every month. My doc was a bit concered as I'm not one to complain, what I mean by that is I don't let on as much as I do, I just don't want to be seen as a fuss and just put up with it, like pain and side effects of treatment. He said I seemed 'troubled', which to some degree I am, I just don't know how to express it or explain, its like there are no words for it to make any sense. I'm also worried bout my Mum, she's my rock, my world and I wouldn't be here without her, I don't like her to worry bout me so I put up with it, trouble is she can read me like a book sometimes. Though I never rant or let it out when I have bad news or no improvement which she would like me too sometimes as it may be written all over my face but I won't express it with emotion sometimes, as I feel as if its the way it has to be. Anyway that my rant, I would like to say more but I'm knackered bt I've realised that in writing this it helps so maybe that's what I need to do, write it down.

Hannah 18 w/cf

hwilson19 · Oct 31, 2009

So its 4am in the morning just been sick for the third time, stopped the infusion of bronchdilators as its them making me sick and crabby. I'm back in hospital for the 8th time in 6 months, lung function has gone dramatically down over the last 3 years. I'm 18 suppose to be doing my degree, my job and still haven't managed to pass my driving test yet! Everything is on hold, life is on hold, I'm just 'functioning' atm, I'm not depressed just fed up of my health, I love my life in general just haven't had one since April, I had like 2/3 years worth of IVs in 6 months, I usually last 3-5 months without now its every other week or every month. My doc was a bit concered as I'm not one to complain, what I mean by that is I don't let on as much as I do, I just don't want to be seen as a fuss and just put up with it, like pain and side effects of treatment. He said I seemed 'troubled', which to some degree I am, I just don't know how to express it or explain, its like there are no words for it to make any sense. I'm also worried bout my Mum, she's my rock, my world and I wouldn't be here without her, I don't like her to worry bout me so I put up with it, trouble is she can read me like a book sometimes. Though I never rant or let it out when I have bad news or no improvement which she would like me too sometimes as it may be written all over my face but I won't express it with emotion sometimes, as I feel as if its the way it has to be. Anyway that my rant, I would like to say more but I'm knackered bt I've realised that in writing this it helps so maybe that's what I need to do, write it down.
 
 Hannah 18 w/cf

static · Oct 31, 2009

I am pretty private about my feelings as well. It sort of came along with the whole not wanting to feel different and not telling anyone but family that I actually have Cystic Fibrosis.

However, recently I started to express my feelings at my doctors office and I feel much better knowing that even though I am private about my CF publically I can still express what is really bothering me and check to see how others cope as well.

One thing I also learned is your doctor is there to treat the symptoms but not really your beliefs/experiences. Due to incompliance on certain medications I expressed my complaints/fears to my doctor and he recently mentioned what I talked about to our CF clinic sociologist (I've seen this sociologist in clinic for three years and every time he came in I basicly lied and said I was "fine" because like you I don't like to complain). This allowed him to bring up the subject, but once it was brought up I felt much better getting it off my chest to someone who had experience talking with other people who are in the same boat as I.

All I can say is continue to seek support and those who will listen to how you feel here and anywhere else you can find it. Being private doesn't mean you have to be alone in this, and maybe one day we will both open up more and be better for it.

static · Oct 31, 2009

I am pretty private about my feelings as well. It sort of came along with the whole not wanting to feel different and not telling anyone but family that I actually have Cystic Fibrosis.

However, recently I started to express my feelings at my doctors office and I feel much better knowing that even though I am private about my CF publically I can still express what is really bothering me and check to see how others cope as well.

One thing I also learned is your doctor is there to treat the symptoms but not really your beliefs/experiences. Due to incompliance on certain medications I expressed my complaints/fears to my doctor and he recently mentioned what I talked about to our CF clinic sociologist (I've seen this sociologist in clinic for three years and every time he came in I basicly lied and said I was "fine" because like you I don't like to complain). This allowed him to bring up the subject, but once it was brought up I felt much better getting it off my chest to someone who had experience talking with other people who are in the same boat as I.

All I can say is continue to seek support and those who will listen to how you feel here and anywhere else you can find it. Being private doesn't mean you have to be alone in this, and maybe one day we will both open up more and be better for it.

static · Oct 31, 2009

I am pretty private about my feelings as well. It sort of came along with the whole not wanting to feel different and not telling anyone but family that I actually have Cystic Fibrosis.

However, recently I started to express my feelings at my doctors office and I feel much better knowing that even though I am private about my CF publically I can still express what is really bothering me and check to see how others cope as well.

One thing I also learned is your doctor is there to treat the symptoms but not really your beliefs/experiences. Due to incompliance on certain medications I expressed my complaints/fears to my doctor and he recently mentioned what I talked about to our CF clinic sociologist (I've seen this sociologist in clinic for three years and every time he came in I basicly lied and said I was "fine" because like you I don't like to complain). This allowed him to bring up the subject, but once it was brought up I felt much better getting it off my chest to someone who had experience talking with other people who are in the same boat as I.

All I can say is continue to seek support and those who will listen to how you feel here and anywhere else you can find it. Being private doesn't mean you have to be alone in this, and maybe one day we will both open up more and be better for it.

static · Oct 31, 2009

I am pretty private about my feelings as well. It sort of came along with the whole not wanting to feel different and not telling anyone but family that I actually have Cystic Fibrosis.

However, recently I started to express my feelings at my doctors office and I feel much better knowing that even though I am private about my CF publically I can still express what is really bothering me and check to see how others cope as well.

One thing I also learned is your doctor is there to treat the symptoms but not really your beliefs/experiences. Due to incompliance on certain medications I expressed my complaints/fears to my doctor and he recently mentioned what I talked about to our CF clinic sociologist (I've seen this sociologist in clinic for three years and every time he came in I basicly lied and said I was "fine" because like you I don't like to complain). This allowed him to bring up the subject, but once it was brought up I felt much better getting it off my chest to someone who had experience talking with other people who are in the same boat as I.

All I can say is continue to seek support and those who will listen to how you feel here and anywhere else you can find it. Being private doesn't mean you have to be alone in this, and maybe one day we will both open up more and be better for it.

static · Oct 31, 2009

I am pretty private about my feelings as well. It sort of came along with the whole not wanting to feel different and not telling anyone but family that I actually have Cystic Fibrosis.
 
 However, recently I started to express my feelings at my doctors office and I feel much better knowing that even though I am private about my CF publically I can still express what is really bothering me and check to see how others cope as well.
 
 One thing I also learned is your doctor is there to treat the symptoms but not really your beliefs/experiences. Due to incompliance on certain medications I expressed my complaints/fears to my doctor and he recently mentioned what I talked about to our CF clinic sociologist (I've seen this sociologist in clinic for three years and every time he came in I basicly lied and said I was "fine" because like you I don't like to complain). This allowed him to bring up the subject, but once it was brought up I felt much better getting it off my chest to someone who had experience talking with other people who are in the same boat as I.
 
 All I can say is continue to seek support and those who will listen to how you feel here and anywhere else you can find it. Being private doesn't mean you have to be alone in this, and maybe one day we will both open up more and be better for it.

hwilson19 · Oct 31, 2009

Havin a really bad day today, just sooo low and really don't want to be here anymore <img src="i/expressions/face-icon-small-sad.gif" border="0"> I'm tired, not just through lack of sleep but tired of breathing. I've been for a walk round the hospital, clear my head a little but just want to go home and cuddle my dog. Lack of motavation is catching up with me, really couldn't be bothered this morning but I forced myself to do my nebs and treatment, just seems so endless. What a girl to do eh? I feel like a fighting a battle I know I'm going to lose eventually. I don't want to give up bt don't feel if i ve got the energy either. Every cloud has a silver lining I know and tomz may be a better day just trying to get through this one first. X

Hannah 18 w/cf

hwilson19 · Oct 31, 2009

Havin a really bad day today, just sooo low and really don't want to be here anymore <img src="i/expressions/face-icon-small-sad.gif" border="0"> I'm tired, not just through lack of sleep but tired of breathing. I've been for a walk round the hospital, clear my head a little but just want to go home and cuddle my dog. Lack of motavation is catching up with me, really couldn't be bothered this morning but I forced myself to do my nebs and treatment, just seems so endless. What a girl to do eh? I feel like a fighting a battle I know I'm going to lose eventually. I don't want to give up bt don't feel if i ve got the energy either. Every cloud has a silver lining I know and tomz may be a better day just trying to get through this one first. X

Hannah 18 w/cf

hwilson19 · Oct 31, 2009

Havin a really bad day today, just sooo low and really don't want to be here anymore <img src="i/expressions/face-icon-small-sad.gif" border="0"> I'm tired, not just through lack of sleep but tired of breathing. I've been for a walk round the hospital, clear my head a little but just want to go home and cuddle my dog. Lack of motavation is catching up with me, really couldn't be bothered this morning but I forced myself to do my nebs and treatment, just seems so endless. What a girl to do eh? I feel like a fighting a battle I know I'm going to lose eventually. I don't want to give up bt don't feel if i ve got the energy either. Every cloud has a silver lining I know and tomz may be a better day just trying to get through this one first. X

Hannah 18 w/cf

hwilson19 · Oct 31, 2009

Havin a really bad day today, just sooo low and really don't want to be here anymore <img src="i/expressions/face-icon-small-sad.gif" border="0"> I'm tired, not just through lack of sleep but tired of breathing. I've been for a walk round the hospital, clear my head a little but just want to go home and cuddle my dog. Lack of motavation is catching up with me, really couldn't be bothered this morning but I forced myself to do my nebs and treatment, just seems so endless. What a girl to do eh? I feel like a fighting a battle I know I'm going to lose eventually. I don't want to give up bt don't feel if i ve got the energy either. Every cloud has a silver lining I know and tomz may be a better day just trying to get through this one first. X

Hannah 18 w/cf

hwilson19 · Oct 31, 2009

Havin a really bad day today, just sooo low and really don't want to be here anymore <img src="i/expressions/face-icon-small-sad.gif" border="0"> I'm tired, not just through lack of sleep but tired of breathing. I've been for a walk round the hospital, clear my head a little but just want to go home and cuddle my dog. Lack of motavation is catching up with me, really couldn't be bothered this morning but I forced myself to do my nebs and treatment, just seems so endless. What a girl to do eh? I feel like a fighting a battle I know I'm going to lose eventually. I don't want to give up bt don't feel if i ve got the energy either. Every cloud has a silver lining I know and tomz may be a better day just trying to get through this one first. X
 
 Hannah 18 w/cf

JustDucky · Oct 31, 2009

Being in the hospital will make those already feelings of isolation and despair worse I think. It is really hard to see that light at the end of the tunnel at times, when all you feel like is going up hill without any breaks.
I really hope you turn the corner soon, perhaps you should talk to a counselor to help you sort things out. I know it has helped me when I feel like you do. Unfortunately those feelings don't miraculously lift, it takes time. I can really sense the frustration that you have and you are sick and tired in body and mind.
Hang in there, vent all you want it helps.
Hugs, Jenn

JustDucky · Oct 31, 2009

Being in the hospital will make those already feelings of isolation and despair worse I think. It is really hard to see that light at the end of the tunnel at times, when all you feel like is going up hill without any breaks.
I really hope you turn the corner soon, perhaps you should talk to a counselor to help you sort things out. I know it has helped me when I feel like you do. Unfortunately those feelings don't miraculously lift, it takes time. I can really sense the frustration that you have and you are sick and tired in body and mind.
Hang in there, vent all you want it helps.
Hugs, Jenn

JustDucky · Oct 31, 2009

Being in the hospital will make those already feelings of isolation and despair worse I think. It is really hard to see that light at the end of the tunnel at times, when all you feel like is going up hill without any breaks.
I really hope you turn the corner soon, perhaps you should talk to a counselor to help you sort things out. I know it has helped me when I feel like you do. Unfortunately those feelings don't miraculously lift, it takes time. I can really sense the frustration that you have and you are sick and tired in body and mind.
Hang in there, vent all you want it helps.
Hugs, Jenn

JustDucky · Oct 31, 2009

Being in the hospital will make those already feelings of isolation and despair worse I think. It is really hard to see that light at the end of the tunnel at times, when all you feel like is going up hill without any breaks.
I really hope you turn the corner soon, perhaps you should talk to a counselor to help you sort things out. I know it has helped me when I feel like you do. Unfortunately those feelings don't miraculously lift, it takes time. I can really sense the frustration that you have and you are sick and tired in body and mind.
Hang in there, vent all you want it helps.
Hugs, Jenn

JustDucky · Oct 31, 2009

Being in the hospital will make those already feelings of isolation and despair worse I think. It is really hard to see that light at the end of the tunnel at times, when all you feel like is going up hill without any breaks.
 I really hope you turn the corner soon, perhaps you should talk to a counselor to help you sort things out. I know it has helped me when I feel like you do. Unfortunately those feelings don't miraculously lift, it takes time. I can really sense the frustration that you have and you are sick and tired in body and mind.
 Hang in there, vent all you want it helps.
 Hugs, Jenn

Do you put up with it for the sake of putting up with it?

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