Hi everyone! I'm a 20 year old female who has lived with CF since I was born. I've got some serious issues though. When I was younger I used to flick my pills under the refridgerator because I couldn't swallow them. I became lactose intolerant until I had surgery and it went away. I was anerexic once even though I didn't need to be. As we all know CF patients are always on the low end of the weight pole but I didn't like the way I looked. I suffer from serious depression, not only because of the CF, but everything I've had to go through in my life. I became diabetic at age 14 because of my pancrease breaking down. Then when I started high school I started smoking pot. Real smart right! Now I'm 20 years old, been out of high school for two years now, but I still can't seem to get myself on the right track! I always take my enzymes, but as for anyother medicine I'm supposed to take, it doesn't happen! It's such a pain in the butt! I do eat again, though it's hard as heck to gain any weight! But I unfortuanately still do drugs! Right now I'm getting a cold so I'm trying to quit, but the second I start to feel better, I'll be back to smoking again! Today was a particularly rough day in the means of doing away with myself. I'm pretty suicidal. I have a bad outlook on life as well. I live everyday wondering what I'm here for. Why I have to go through with all this crap. I don't want to have kids because I don't want them to resent me someday for passing this disease on to them. I just want to be happy. Is there anyone out there living with CF who feels the sameway I do, or is everyone a good patient who does what they're supposed to and takes care of themselves religiously?
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.
living in denial
- Thread starter anonymous
- Start date
spicyone18
New member
Hi, there. I am sorry you are having such a rough time. As far as the being a good patient, I'd be the first to admit that I am not always religiously taking my meds although I have become better over the years. As far as the suicidal goes, I have never been in that state of mind but have been on the other side meaning I have lost my father to suicide. Having gone through that I went through much depression which i have over come. What I can say is just try to remember there is always at least one person that you mean the world to. Anyways if you would like to chat you can email me at spicy1_18@yahoo.com.
Until then I hope you have better days<img src="i/expressions/sun.gif" border="0">
Until then I hope you have better days<img src="i/expressions/sun.gif" border="0">
Dear Annoymous
I do not have CF but do have a child with CF. Even though i do not have CF i do understand what you are going through. I lost a parent at the age of 6 and had an alcoholic father, who remarried several times and my brother and i were always abused. During my teenage years i also used drugs and not just marijuana but harsher drugs as well. I was also suicidal and always thought why me and why was i given this life, i was always depressed because of the absence of my mother and wondered how life would be if she were here. I remember being so high that i would pray that i would come down and never do these drugs again!!! and guess what i would do them again and again. As far as CF goes i know how hard it is at times for me as a parent to have a child with CF and know that there is nothing that i can do except for show her how important it is for her to take care of herself and instill this in her for when she does reach her teenage years. Just because you have CF does not make you less important and i think you need to realize this in order to take care of yourself. I am sure that you do not resent your parents for passing this disease on to you so why would you think that your child would resent you. I am trying to teach my child to stay positive about CF and i am sure that alot of people will say "easy for me to say because i am not the one with this disease" WRONG!!! I would do anything i could possibly do to take this from my child, it is so hard to watch your child be sick!!! but i could never imagine my life without her , she is a blessing. Have you ever seeked counseling for drugs and/or depression?? Have you ever taken any anti-depression medication?? I know you have said that you do not like to take your meds?? why is that ?? you still will smoke to make you feel better so why not take your meds to make you feel better. Also there are anti depressants that will make you feel better and feel better about yourself. I will keep you in my prayers and i would like for you to know that you are important and i feel that if you start to take care of yourself you will feel more important to YOU!!!
I do not have CF but do have a child with CF. Even though i do not have CF i do understand what you are going through. I lost a parent at the age of 6 and had an alcoholic father, who remarried several times and my brother and i were always abused. During my teenage years i also used drugs and not just marijuana but harsher drugs as well. I was also suicidal and always thought why me and why was i given this life, i was always depressed because of the absence of my mother and wondered how life would be if she were here. I remember being so high that i would pray that i would come down and never do these drugs again!!! and guess what i would do them again and again. As far as CF goes i know how hard it is at times for me as a parent to have a child with CF and know that there is nothing that i can do except for show her how important it is for her to take care of herself and instill this in her for when she does reach her teenage years. Just because you have CF does not make you less important and i think you need to realize this in order to take care of yourself. I am sure that you do not resent your parents for passing this disease on to you so why would you think that your child would resent you. I am trying to teach my child to stay positive about CF and i am sure that alot of people will say "easy for me to say because i am not the one with this disease" WRONG!!! I would do anything i could possibly do to take this from my child, it is so hard to watch your child be sick!!! but i could never imagine my life without her , she is a blessing. Have you ever seeked counseling for drugs and/or depression?? Have you ever taken any anti-depression medication?? I know you have said that you do not like to take your meds?? why is that ?? you still will smoke to make you feel better so why not take your meds to make you feel better. Also there are anti depressants that will make you feel better and feel better about yourself. I will keep you in my prayers and i would like for you to know that you are important and i feel that if you start to take care of yourself you will feel more important to YOU!!!
Hi I dont have cf ,my baby son does. I am a diabetic and recovered anorexic I was so sick for most of my life I didnt know anything els.I was so depressed for so long I didnt believe that there was another way to exist. after spending most of my life at rock botom it all came down to one day... I decided to try life differentlyfor 1 year, I started taking my meds eating,not doing harmfull things to my body, and changed the way I TALKED TO MYSELF!! It felt very unnatural....... after a while it didnt seem like I had to work so hard at it. I realized I wanted something els out of life, well after a year was up I never wanted to go back to where I was before I have never felt so impowered WHY didnt anyone tell me, my life could be this way! maybe they did but I coulnt hear it.
I only thought about going back 1 time after my son was born with CF, but the thought left as quickly as it came when i looked into the eyes of my newborn son, my hero my purpose.
Maggie
I only thought about going back 1 time after my son was born with CF, but the thought left as quickly as it came when i looked into the eyes of my newborn son, my hero my purpose.
Maggie
tessa55454
New member
You know being 20 is a hard age. You come from living with your parents, and now you are an adult. Their isn't a lot of transition time to take on all this responsibility. And even though you have had CF for a long time, your parents were there, and now it's up to you.
When i was 19 I had a huge breakdown, but it worked. I never did drugs, but I played with mine. I did enough to get by, but not really live fully.
I am extremely complient now. I have been for years. The reason is: what I discovered was my body wasn't trying to do these things to me, it was just trying to live in a compromised body. When things happened, energy low, pain what not; it wasn't because my body was trying to hurt me, it was because it was asking for help.
CF is like a baby. It requires sometimes all your attention. IT whines, and pouts and wants everything from you some days. How does one live? When you start to get over being angry at it, and when your start saying hey..I decided to shake hands with you (my body) then it will start to give you life back. CF isn't fun, we know this. But, your body is just there, sitting there, going how do I work with this machine that is wired wrong? By you not doing stuff, it's tired and doens't know what to do.
When you start doing more things that your body will respond, "wow, thanks for being so nice to me," your life will return little-by-little. YOu have to do the stuff, it's really annoying I know.
Maybe seeking a counselor to sort out through your thoughts. Try writing, try talking about it. And sometimes I know for myself, I am so sick of it I don't feel talking about it, but you are human and you need to sort stuff out. If you didn't have Cf, their probably be something else that is on your mind. You have to sort throug it. I saw a counselor regularly from 18-22 years. Maybe I saw her one a month, or something, but I saw her. I confronted my life through the process and said hey, this is what is real, this is what isn't, here are my choices.
I hope anything from the emails people have sent help some. take care and seek some help.
Tessa 27w/cf
When i was 19 I had a huge breakdown, but it worked. I never did drugs, but I played with mine. I did enough to get by, but not really live fully.
I am extremely complient now. I have been for years. The reason is: what I discovered was my body wasn't trying to do these things to me, it was just trying to live in a compromised body. When things happened, energy low, pain what not; it wasn't because my body was trying to hurt me, it was because it was asking for help.
CF is like a baby. It requires sometimes all your attention. IT whines, and pouts and wants everything from you some days. How does one live? When you start to get over being angry at it, and when your start saying hey..I decided to shake hands with you (my body) then it will start to give you life back. CF isn't fun, we know this. But, your body is just there, sitting there, going how do I work with this machine that is wired wrong? By you not doing stuff, it's tired and doens't know what to do.
When you start doing more things that your body will respond, "wow, thanks for being so nice to me," your life will return little-by-little. YOu have to do the stuff, it's really annoying I know.
Maybe seeking a counselor to sort out through your thoughts. Try writing, try talking about it. And sometimes I know for myself, I am so sick of it I don't feel talking about it, but you are human and you need to sort stuff out. If you didn't have Cf, their probably be something else that is on your mind. You have to sort throug it. I saw a counselor regularly from 18-22 years. Maybe I saw her one a month, or something, but I saw her. I confronted my life through the process and said hey, this is what is real, this is what isn't, here are my choices.
I hope anything from the emails people have sent help some. take care and seek some help.
Tessa 27w/cf
thefrogprincess
New member
I hope you find some support here. I think all of us have gone through a phase of not taking meds. I'm trying to get into a manageable routine with my pulmozyme, I work a weird schedule and often skip it when I have to work early. I know I shouldn't but its hard to get up 20 minutes earlier when I already get up at 6:30.
As far as the suicide issue goes, if you are thinking about it you need to see a professional. None of us here is qualified to help you with that. Maybe you need antidepressants (that could help get you motivated to take your meds not to mention brightening your whole outlook).
Good luck.
As far as the suicide issue goes, if you are thinking about it you need to see a professional. None of us here is qualified to help you with that. Maybe you need antidepressants (that could help get you motivated to take your meds not to mention brightening your whole outlook).
Good luck.
Thank you for expressing your concerns in me. Just knowing that there are good hearted people out there puts a smile on my face! You and I have a lot in common. When I was younger my parents were heavily into drugs and alcohol, then they split when I was nine. It's taken a long time for me to get over it! They each straightened up their acts and got remarried. I lived with my mom and stepdad until he started doing strange things when I was 15. He would "tickle" me so high up on my leg that he would rub my privates. I never thought anything of it, just that he accidently did it. Then he would slap my butt and I told him that made me uncomfortable. Then he started showing me porn on the internet and teasing me about being on looking at it (which I never did). But at the sametime he was extremely mentally abusive. I was always stupid and this and that. So one day he took me into his garage/snake room to "talk" to me when he started telling me about sexual experiences that went on between my mom and him. I should've gotten up and left right then, but didn't. He went on to ask me if I'd perform oral sex with him. I obviously said no, and he kept asking, "are you sure?" So that's when I got up and left. I later told a counseler that I was seeing at the time and she contacted child services and I went to live with my dad. Eventually the whole thing went to court and he pleaded guilty. Now how I lost my mom is it's been four years, with him pleading guilty and my mom and him are still "trying to work it out!" That's when my mom died to me! Now as for counseling, yes, I have been through so many counselers since I was about 15 years old. It helps me to talk to them at the moment, but then I leave and all the problems are still there! I've tried many antidepressants. Zoloft, Celexa, Lith....(?), welbutrin(spelling?), and currently I'm on Cymbalta. The welbutrin made me terribly ill. My weight dropped from 100 lbs. to 88lbs. in two weeks. My lung functions dropped drastically and I ended up in the hospital. I'm 5'1, it's not normal to be 88lbs. I felt like a skeleton, and looked like on too. About my meds, I don't really know why I don't take them. I know that they'll help me, but I just never get myself to do them, then when I'm sick and I do really need to I don't want to because they make me cough. And I hate coughing worse than anything in the world. I just wish that there could be a day when I didn't cough all day long! I guess doing my meds would help that out. It's the little voice in my head that can't seem to get my body to move to go do the medicines. It's something I gotta start working on. Thanks for responding on a positive note.
L
luke
Guest
anonymous,
your story can be looked at several different ways, I choose to look at it as one of strength. It takes a strong person not to let a person in authority take advantage of you. I always think that we already have the deck stacked against us with having CF, we should automatically be entitled to good, loving parents. Unfortunately it seems to be the exception and not the rule! I am sorry about your circumstance but encourage you to take care of yourself and applaud your efforts thus far. It is obvious to me that you are equiped with the strength to take care of yourself, you just need to decide to do it. I can't give you any motivation there really, we all have different motivations. I know that life is a wonderful thing that we can't take for granted. The longer we live the more time we have for something wonderful to happen to us! I will keep in you in my thoughts and prayers.
Luke
your story can be looked at several different ways, I choose to look at it as one of strength. It takes a strong person not to let a person in authority take advantage of you. I always think that we already have the deck stacked against us with having CF, we should automatically be entitled to good, loving parents. Unfortunately it seems to be the exception and not the rule! I am sorry about your circumstance but encourage you to take care of yourself and applaud your efforts thus far. It is obvious to me that you are equiped with the strength to take care of yourself, you just need to decide to do it. I can't give you any motivation there really, we all have different motivations. I know that life is a wonderful thing that we can't take for granted. The longer we live the more time we have for something wonderful to happen to us! I will keep in you in my thoughts and prayers.
Luke
Anonymous, this is kind of spooky. I am also twenty, also with cf, also got diabetes at 14, and also have/had an eating disorder. Plus I've also tried loads of antidepressants and have been semi-suicidal at times. I am not a model in compliance and a lot of the time there really seems to be no point in taking care of myself. We should definitely talk more. My IM is in my profile.
I am a father of an almost 30 year old with cf. I can tell you from sitting in the hospital and watching all the pain, the time
she must spend on her vest, all the medication she takes, feeling good today and tomorrow in the hospital. There is only one way I can see to live with cf, as a parent or as the person with cf, that is my faith in God and the Hereafter. I know this is not popular thinking but it works wonders for me. I will pray that the Good Lord will help you. Anyone that wants to help can also pray.
A Dad
she must spend on her vest, all the medication she takes, feeling good today and tomorrow in the hospital. There is only one way I can see to live with cf, as a parent or as the person with cf, that is my faith in God and the Hereafter. I know this is not popular thinking but it works wonders for me. I will pray that the Good Lord will help you. Anyone that wants to help can also pray.
A Dad
I think i feel this way <i>too</i> often for my own good. i just sit and ponder about every little thing i can possibly think of. i find myself thinking alot that my life is just a big waist of time, and when people tell me otherwise im like " what the hell does my future hold, my death" thats about it, that's reality. everyone in my life is in denial of it, which makes me laugh a little bit becuase they know it deep down inside, they just dont want to even talk about the subject at all. why not? i dont have a clue, if im able to talk about it then anyone else should, i mean geez im the one with CF, not them.
i feel the same exact way, i think about my death ALOT. i always think about being in the hospital and not being happy with the way my life turned out or thinking of the things that i wanted to do and never got around to doing. the best is when others tell you, oh you have time....yeah i do have time, i have enough time to worry about my health and to focus on everything i can possibly do to make my life span a little longer. that's pretty much all i have time for.
one thing i did learn : if you let CF be stronger then you, it WILL kill you.
i feel the same exact way, i think about my death ALOT. i always think about being in the hospital and not being happy with the way my life turned out or thinking of the things that i wanted to do and never got around to doing. the best is when others tell you, oh you have time....yeah i do have time, i have enough time to worry about my health and to focus on everything i can possibly do to make my life span a little longer. that's pretty much all i have time for.
one thing i did learn : if you let CF be stronger then you, it WILL kill you.
i think everyone here as probably felt this way one time or another..i know i have..not really suicidal but often wondering how much longer i have and how it might be easier to give up..i often feel really guilty when i miss my meds or i go in the hospital. i feel like i am totally inconveniencing everyone one around me and i swear never to do it again..but then i manage to screw it up..time and time again. we are human we screw up..i've smoked pot and drank far longer then i should have but i have quit and i am trying my best to keep up with good habits..thasts all we can do.. try our best. i do think you should try and find someone to talk to. i have a shrink that i love and with some anti depression meds i am much happier. good luck to you and keep us posted.
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>There is only one way I can see to live with cf...<hr></blockquote>
You'd actually be surprised how well people can manage--even in much worse situations--with no gods at all.
As I wrote in the same topic started in the youth forum, that could have been me, last year, if <b>(1)</b> I had easy access to drugs in this neighborhood, and <b>(2)</b> wasn't actually too much of a coward to try them. Luckily, the one time I smoked a cig--at 12--I coughed so hard that I decided never to try anything like that again, so... I've defended smokers' rights at length in debate, however, so I won't lecture you about it, either. All in all, those treatments and pills are such a hassle, I'm surprised any of us do them at all. Eventually, of course, the realization hits that we could have had much better health if we stuck to them, but at the same time, "who cares?" Why do those things, when--if you're not enjoying life--they're just prolonging the inevitable, and letting you lead what is better described as an ambiguous type of existence? (Sound familiar?)
I really don't know what to suggest. I got extremely fortunate, and found someone who made life worth living again. Without her, I really wouldn't care. There's no guarantee such a stroke of luck will happen in anyone else's case. There's no guarantee of a happy ending, just because you go for it. Life can truly bitchslap people, and there won't necessarily be any rhyme or reason to it. It reassures me that you still want to be happy; the disillusionment CF can create hasn't fully gripped you yet. Is there anything you enjoy doing enough to justify putting up with the rest of this crap? A hobby, friends...?
If you don't mind me being blunt, what is your prognosis, if any? How high are your PFTs? Do you believe you should plan for college, a job, a reasonably decent life for years more... or does it seem more probable you're in the end stages (which probably changes some dynamics and priorities)? Is getting listed for a lung transplant an option for you, or medically unlikely/you don't want to go through with it? You may want to ask yourself (and maybe your docs) some tough questions about what you'd like to be doing in a year or two, what is likely to happen in a year or two, what is likely to happen in a year or two if you change what you're doing, and (only you'll know this) whether you can handle that, or want to.
Wish you all the best, not that it'll change much. For whatever it's worth, you're not alone.
You'd actually be surprised how well people can manage--even in much worse situations--with no gods at all.
As I wrote in the same topic started in the youth forum, that could have been me, last year, if <b>(1)</b> I had easy access to drugs in this neighborhood, and <b>(2)</b> wasn't actually too much of a coward to try them. Luckily, the one time I smoked a cig--at 12--I coughed so hard that I decided never to try anything like that again, so... I've defended smokers' rights at length in debate, however, so I won't lecture you about it, either. All in all, those treatments and pills are such a hassle, I'm surprised any of us do them at all. Eventually, of course, the realization hits that we could have had much better health if we stuck to them, but at the same time, "who cares?" Why do those things, when--if you're not enjoying life--they're just prolonging the inevitable, and letting you lead what is better described as an ambiguous type of existence? (Sound familiar?)
I really don't know what to suggest. I got extremely fortunate, and found someone who made life worth living again. Without her, I really wouldn't care. There's no guarantee such a stroke of luck will happen in anyone else's case. There's no guarantee of a happy ending, just because you go for it. Life can truly bitchslap people, and there won't necessarily be any rhyme or reason to it. It reassures me that you still want to be happy; the disillusionment CF can create hasn't fully gripped you yet. Is there anything you enjoy doing enough to justify putting up with the rest of this crap? A hobby, friends...?
If you don't mind me being blunt, what is your prognosis, if any? How high are your PFTs? Do you believe you should plan for college, a job, a reasonably decent life for years more... or does it seem more probable you're in the end stages (which probably changes some dynamics and priorities)? Is getting listed for a lung transplant an option for you, or medically unlikely/you don't want to go through with it? You may want to ask yourself (and maybe your docs) some tough questions about what you'd like to be doing in a year or two, what is likely to happen in a year or two, what is likely to happen in a year or two if you change what you're doing, and (only you'll know this) whether you can handle that, or want to.
Wish you all the best, not that it'll change much. For whatever it's worth, you're not alone.
This is for the last poster
I pray to God that my daughter is NEVER so negative about life!!!! Life is what you make of it CF or not!!! EVERYONE will leave this world some day and some way, of course i do not want to lose my daughter or for that matter any of my loved ones. Maybe i have a different outlook on all of this because i am a believer and so are my children. Of course there are times when i get really depressed and cry and feel bad but God always pulls me right out of it. I know how hard this disease can be but i think that if one stays positive and not always dwell on the fact of death they will be much happier and probably healthier!! There are CFer"s that live and will live alot longer lives than my mother who died at the age of 29 of a brain anuerism. The fact is we are all going to die so please do not dwell on it and live life to its fullest.
Kaitsmom<img src="i/expressions/rose.gif" border="0">
I pray to God that my daughter is NEVER so negative about life!!!! Life is what you make of it CF or not!!! EVERYONE will leave this world some day and some way, of course i do not want to lose my daughter or for that matter any of my loved ones. Maybe i have a different outlook on all of this because i am a believer and so are my children. Of course there are times when i get really depressed and cry and feel bad but God always pulls me right out of it. I know how hard this disease can be but i think that if one stays positive and not always dwell on the fact of death they will be much happier and probably healthier!! There are CFer"s that live and will live alot longer lives than my mother who died at the age of 29 of a brain anuerism. The fact is we are all going to die so please do not dwell on it and live life to its fullest.
Kaitsmom<img src="i/expressions/rose.gif" border="0">
tessa55454
New member
I have to comment because, you know bad things happen. If you did not have CF, their would be another challenge in this life. You can not pass a lifetime without having a challenge of some sort. What people do is get stuck in the stories, regurgitating them up all the time, instead of putting that energy to go forth.
IF you run around in negative energy all the time, that is what you have. If you believe what your life will be, that is what it will be. Even if you really want a better life, until you believe it and put forth the work, it's not going to happen. And yes, CF is bigger than many other situations that can happen in ones life, but it's all relative. YOu could have a durg-abuse problem, you mom could have left you, you could have grown up in a severe abusive household, you could be in extreme poverty, whatever...it's all relative. Sometimes, Cf people have those obsticles on top of CF. Life just sux sometimes, but then it doesn't after a while. Once you grow a little, and realize you make what you want out of your life, period. It's not easy for me to say that because I have quite a severe case of Cf. But what i am saying is, you just never know. It's difficult not to be angry. Anger is probably my biggest challenge of all. After a while, you just waste so much time and energy on being angry, it doesn't do anyone any good, and definitley not yourself.
My partner said that at first when she found out that I had CF, she did the research, and she's like, "wow, that's a lot." But, then she let go of it, and thought, "hell, I could die before she does." She took it in consideration, but again she could go before me.
that's all I am going to say at this point. If you believe your life will suck, it will.
Tessa
27 w/cf
IF you run around in negative energy all the time, that is what you have. If you believe what your life will be, that is what it will be. Even if you really want a better life, until you believe it and put forth the work, it's not going to happen. And yes, CF is bigger than many other situations that can happen in ones life, but it's all relative. YOu could have a durg-abuse problem, you mom could have left you, you could have grown up in a severe abusive household, you could be in extreme poverty, whatever...it's all relative. Sometimes, Cf people have those obsticles on top of CF. Life just sux sometimes, but then it doesn't after a while. Once you grow a little, and realize you make what you want out of your life, period. It's not easy for me to say that because I have quite a severe case of Cf. But what i am saying is, you just never know. It's difficult not to be angry. Anger is probably my biggest challenge of all. After a while, you just waste so much time and energy on being angry, it doesn't do anyone any good, and definitley not yourself.
My partner said that at first when she found out that I had CF, she did the research, and she's like, "wow, that's a lot." But, then she let go of it, and thought, "hell, I could die before she does." She took it in consideration, but again she could go before me.
that's all I am going to say at this point. If you believe your life will suck, it will.
Tessa
27 w/cf
I don't know, Tessa. Yeah, people probably do tend to "regurgitate" their woes, which might create a "negative engergy." Still, everyone -- CF or no -- seeks empathy. At some level, we all wish somebody -- even one other person -- could know exactly how we feel, good or bad. Isn't this what inspires everything from relationships to the creation of art to the various searches for God you read about on these pages? The alternative is complete alientation: not a happy prospect. Problem is, the more marginalized you feel -- the more alientated from the "normal" ppl around you because of, say, a disability, or poverty, or depression -- the more you actually need that empathy but at the same time sense you can't possibly get it without becoming so dramatic no one can possibly ignore you. From experience, I think this is behind a lot of the "acting up" -- the risky behavior, the suicidal gestures (including choosing not to take care of yourself) -- as well as the "regurgitation," which often sounds to others like whining. It's a tough juggling act, isn't it? Others understand us through the EXPERIENCE of us, which is our stories. And we need them to know us. Yet, if we have something like CF, our stories are likely to be pretty depressing. I've tried hard to act tough through it all, to keep my woes to myself, if for no other reason than to avoid dragging everyone else down with me. Also, when it comes to things like fear and despair, no one else can really fix you anyway. At some point I figured I might as well try to negotiate my own tenuous peace with the disease, not to mention with the common fears and questions everyone faces. So mostly -- not always! -- when I find myself whining, I slap myself and shut up. But I realize this might actually be a FORM of denial -- the tough-guy guise, the APPEARANCE of facing things like a soldier. It also might be nothing more than stubborn pride and the suspicion that if you give an inch, the disease will claim the rest of you. Who knows? I don't recommend any one "way." Mine has a price. It often leads to solitude when I least want it, and all the acting probably merits an academy award. I know others approach things differently, and I can't say they're wrong.
As for the original poster's comments on drug use and avoiding treatments, I confess I've been around the block a few times and done a lot of things I probably shouldn't be alive to tell you about. I don't exactly regret much of it -- I had a lot of good times and they didn't kill me -- but now that I'm an old fart of 39, I've pretty much said goodbye to the vices. There's nothing moral to this -- I just got sick of feeling like hell because of destructive behavior ON TOP OF feeling like hell because of the illness. These days, even if my body's going to seed, I appreciate clarity of mind more than ever. However, I do understand that a nice buzz and a little carousing does make you forget about CF for a while and is even a way to show the illness "who's boss." At least there's a sense of control when you're self-destructing! But again strictly from experience, I have to caution against things drugs and booze. Not only are they terrible for your health, but they also tend prevent you from being able to sort things out in a way that lasts more than the span of a bender. I'd even throw some of the psycho pills into that category, though I know others will disagree. The point is, substance abuse is not only a symptom but also a cause of depression, and you've probably got enough to be depressed about already. You don't have to be perfect or to bar yourself from every little naughty pleasure. But if getting stoned or staying out all night or blowing off your meds makes you feel worse day-to-day -- physically OR mentally -- just think how nice it would be to feel even a little bit better! Some people can adjust their behavior on their own, but obviously cannot. If you feel trapped in this cycle, as others here have said, don't be ashamed to get help.
Off my high horse now. I hope you start feeling better!
Paul
As for the original poster's comments on drug use and avoiding treatments, I confess I've been around the block a few times and done a lot of things I probably shouldn't be alive to tell you about. I don't exactly regret much of it -- I had a lot of good times and they didn't kill me -- but now that I'm an old fart of 39, I've pretty much said goodbye to the vices. There's nothing moral to this -- I just got sick of feeling like hell because of destructive behavior ON TOP OF feeling like hell because of the illness. These days, even if my body's going to seed, I appreciate clarity of mind more than ever. However, I do understand that a nice buzz and a little carousing does make you forget about CF for a while and is even a way to show the illness "who's boss." At least there's a sense of control when you're self-destructing! But again strictly from experience, I have to caution against things drugs and booze. Not only are they terrible for your health, but they also tend prevent you from being able to sort things out in a way that lasts more than the span of a bender. I'd even throw some of the psycho pills into that category, though I know others will disagree. The point is, substance abuse is not only a symptom but also a cause of depression, and you've probably got enough to be depressed about already. You don't have to be perfect or to bar yourself from every little naughty pleasure. But if getting stoned or staying out all night or blowing off your meds makes you feel worse day-to-day -- physically OR mentally -- just think how nice it would be to feel even a little bit better! Some people can adjust their behavior on their own, but obviously cannot. If you feel trapped in this cycle, as others here have said, don't be ashamed to get help.
Off my high horse now. I hope you start feeling better!
Paul