Melissa! My situation is almost exact to yours! I am 21 and have CF, my CF has gotten quite bad. For the last 3 years I have been in the hospital at least every 2 months. I struggle with this problem. mentally. I had to drop out of school and get my GED, that wasnt completely due to my illness. And about 2 months ago my heart stopped, they stabalized me in my home town, and then flew me to a bigger hospital. This has taken a huge toll on my sanity! They want me to take it even more easy than b4, bc my PTFs arent the greatest either. I love school and would love to work full time but thats not an option rit now. I am looking at taking some online classes, even if it means I cant use the degree I recieve. You must stay active in something. I haven't and have paid for it mentally! I too do nothing all day, and unlike some of you guys; I dont have internet or cable in my apartment. I do have a roommate and many friends I keep in touch with; they have been a huge support system for me. I too would like to volunteer. I want to say thanks to every1, your posts have been helpfull to me even and I hope, melissa, you found answers too. It really helped to know I was not alone in all my issues with this subject, and there are others going thru the same. I also recomend seeing some1, a counselor of some sort, to let all your issues out on and they can help you through some of it. Thanks again for posting this <img src="i/expressions/face-icon-small-happy.gif" border="0">
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Melissa! My situation is almost exact to yours! I am 21 and have CF, my CF has gotten quite bad. For the last 3 years I have been in the hospital at least every 2 months. I struggle with this problem. mentally. I had to drop out of school and get my GED, that wasnt completely due to my illness. And about 2 months ago my heart stopped, they stabalized me in my home town, and then flew me to a bigger hospital. This has taken a huge toll on my sanity! They want me to take it even more easy than b4, bc my PTFs arent the greatest either. I love school and would love to work full time but thats not an option rit now. I am looking at taking some online classes, even if it means I cant use the degree I recieve. You must stay active in something. I haven't and have paid for it mentally! I too do nothing all day, and unlike some of you guys; I dont have internet or cable in my apartment. I do have a roommate and many friends I keep in touch with; they have been a huge support system for me. I too would like to volunteer. I want to say thanks to every1, your posts have been helpfull to me even and I hope, melissa, you found answers too. It really helped to know I was not alone in all my issues with this subject, and there are others going thru the same. I also recomend seeing some1, a counselor of some sort, to let all your issues out on and they can help you through some of it. Thanks again for posting this <img src="i/expressions/face-icon-small-happy.gif" border="0">
NYCLawGirl
New member
i had a lot of health problems starting at around 15 -- after that i was always in the hospital a couple times a year even if my lung function would typically bounce back. i didn't stop working, and ended up going to high school, college, law school, and then working for a few years before my transplant. i don't regret a moment of it, and i wouldn't do it any other way if i could do it again, but i also firmly believe that every person (CF or not) has to find his/her own way to contribute and feel part of the world. there is no right path: whether it be a particular job/profession, school, marriage, whatever. the point it to LIVE, to be happy, and hopefully to make some sort of difference. honestly, you're on the right path just by asking these questions.
my observation is that it sounds as though you're feeling a little left out. your dad's comments might have stung a bit b/c you feel that you would LIKE to work (or something) but you also feel held back by your disease. and to be honest, that's the only part of your story that i think you need to be worried about right now: making yourself feel as though you are stronger than CF, and that it can't stop you from really feeling GREAT about yourself. let go of everything else (within reason, of course - i am NOT saying neglect your health), and just take a couple of baby steps. ask yourself if there's something you would like to do that doesn't require a huge commitment right off the back. some good examples: photography (been mentioned), painting or art, writing, or some other sort of personal improvement project. volunteering is great, of course, and if you need a little extra cash there are some awesome jobs that could keep you active without being too stressful. do you enjoy animals? pet sitting or dog walking could be fun. just be careful if you have allergies and i don't recommend taking care of birds. or if you enjoy exercise maybe set a goal in that field. running or walking a 5k in your area would be awesome for your health and your spirits, and would TOTALLY make your family proud. also, lots of places offer short classes in interesting subjects like art, acting, cooking, writing, or other skills. great way to meet people, fun way to get out of the house, and some of the skills can transfer directly to things that will let you help out around the house. trust me, your parents won't complain!
final suggestion: at the very least, try weaning yourself OFF the activities that you feel might be making your lethargic or a little unhappy. set a computer limit (like "i will spend 4 hours a day without even looking at my computer or TV!") and just do ANYTHING else. read, walk, cook, play, write, whatever. try out things that you think you'll enjoy and i bet you'll be right -- after all, you know yourself best.
rock cf foundation has an exercise challenge for people with CF right now, and cystic gal (the blog -- google it) has a CF poetry contest this upcoming month. check out both of those for fun ways to connect with the CF community and set a fun, non-stressful goal for yourself. good luck!!
my observation is that it sounds as though you're feeling a little left out. your dad's comments might have stung a bit b/c you feel that you would LIKE to work (or something) but you also feel held back by your disease. and to be honest, that's the only part of your story that i think you need to be worried about right now: making yourself feel as though you are stronger than CF, and that it can't stop you from really feeling GREAT about yourself. let go of everything else (within reason, of course - i am NOT saying neglect your health), and just take a couple of baby steps. ask yourself if there's something you would like to do that doesn't require a huge commitment right off the back. some good examples: photography (been mentioned), painting or art, writing, or some other sort of personal improvement project. volunteering is great, of course, and if you need a little extra cash there are some awesome jobs that could keep you active without being too stressful. do you enjoy animals? pet sitting or dog walking could be fun. just be careful if you have allergies and i don't recommend taking care of birds. or if you enjoy exercise maybe set a goal in that field. running or walking a 5k in your area would be awesome for your health and your spirits, and would TOTALLY make your family proud. also, lots of places offer short classes in interesting subjects like art, acting, cooking, writing, or other skills. great way to meet people, fun way to get out of the house, and some of the skills can transfer directly to things that will let you help out around the house. trust me, your parents won't complain!
final suggestion: at the very least, try weaning yourself OFF the activities that you feel might be making your lethargic or a little unhappy. set a computer limit (like "i will spend 4 hours a day without even looking at my computer or TV!") and just do ANYTHING else. read, walk, cook, play, write, whatever. try out things that you think you'll enjoy and i bet you'll be right -- after all, you know yourself best.
rock cf foundation has an exercise challenge for people with CF right now, and cystic gal (the blog -- google it) has a CF poetry contest this upcoming month. check out both of those for fun ways to connect with the CF community and set a fun, non-stressful goal for yourself. good luck!!
NYCLawGirl
New member
i had a lot of health problems starting at around 15 -- after that i was always in the hospital a couple times a year even if my lung function would typically bounce back. i didn't stop working, and ended up going to high school, college, law school, and then working for a few years before my transplant. i don't regret a moment of it, and i wouldn't do it any other way if i could do it again, but i also firmly believe that every person (CF or not) has to find his/her own way to contribute and feel part of the world. there is no right path: whether it be a particular job/profession, school, marriage, whatever. the point it to LIVE, to be happy, and hopefully to make some sort of difference. honestly, you're on the right path just by asking these questions.
my observation is that it sounds as though you're feeling a little left out. your dad's comments might have stung a bit b/c you feel that you would LIKE to work (or something) but you also feel held back by your disease. and to be honest, that's the only part of your story that i think you need to be worried about right now: making yourself feel as though you are stronger than CF, and that it can't stop you from really feeling GREAT about yourself. let go of everything else (within reason, of course - i am NOT saying neglect your health), and just take a couple of baby steps. ask yourself if there's something you would like to do that doesn't require a huge commitment right off the back. some good examples: photography (been mentioned), painting or art, writing, or some other sort of personal improvement project. volunteering is great, of course, and if you need a little extra cash there are some awesome jobs that could keep you active without being too stressful. do you enjoy animals? pet sitting or dog walking could be fun. just be careful if you have allergies and i don't recommend taking care of birds. or if you enjoy exercise maybe set a goal in that field. running or walking a 5k in your area would be awesome for your health and your spirits, and would TOTALLY make your family proud. also, lots of places offer short classes in interesting subjects like art, acting, cooking, writing, or other skills. great way to meet people, fun way to get out of the house, and some of the skills can transfer directly to things that will let you help out around the house. trust me, your parents won't complain!
final suggestion: at the very least, try weaning yourself OFF the activities that you feel might be making your lethargic or a little unhappy. set a computer limit (like "i will spend 4 hours a day without even looking at my computer or TV!") and just do ANYTHING else. read, walk, cook, play, write, whatever. try out things that you think you'll enjoy and i bet you'll be right -- after all, you know yourself best.
rock cf foundation has an exercise challenge for people with CF right now, and cystic gal (the blog -- google it) has a CF poetry contest this upcoming month. check out both of those for fun ways to connect with the CF community and set a fun, non-stressful goal for yourself. good luck!!
my observation is that it sounds as though you're feeling a little left out. your dad's comments might have stung a bit b/c you feel that you would LIKE to work (or something) but you also feel held back by your disease. and to be honest, that's the only part of your story that i think you need to be worried about right now: making yourself feel as though you are stronger than CF, and that it can't stop you from really feeling GREAT about yourself. let go of everything else (within reason, of course - i am NOT saying neglect your health), and just take a couple of baby steps. ask yourself if there's something you would like to do that doesn't require a huge commitment right off the back. some good examples: photography (been mentioned), painting or art, writing, or some other sort of personal improvement project. volunteering is great, of course, and if you need a little extra cash there are some awesome jobs that could keep you active without being too stressful. do you enjoy animals? pet sitting or dog walking could be fun. just be careful if you have allergies and i don't recommend taking care of birds. or if you enjoy exercise maybe set a goal in that field. running or walking a 5k in your area would be awesome for your health and your spirits, and would TOTALLY make your family proud. also, lots of places offer short classes in interesting subjects like art, acting, cooking, writing, or other skills. great way to meet people, fun way to get out of the house, and some of the skills can transfer directly to things that will let you help out around the house. trust me, your parents won't complain!
final suggestion: at the very least, try weaning yourself OFF the activities that you feel might be making your lethargic or a little unhappy. set a computer limit (like "i will spend 4 hours a day without even looking at my computer or TV!") and just do ANYTHING else. read, walk, cook, play, write, whatever. try out things that you think you'll enjoy and i bet you'll be right -- after all, you know yourself best.
rock cf foundation has an exercise challenge for people with CF right now, and cystic gal (the blog -- google it) has a CF poetry contest this upcoming month. check out both of those for fun ways to connect with the CF community and set a fun, non-stressful goal for yourself. good luck!!
NYCLawGirl
New member
i had a lot of health problems starting at around 15 -- after that i was always in the hospital a couple times a year even if my lung function would typically bounce back. i didn't stop working, and ended up going to high school, college, law school, and then working for a few years before my transplant. i don't regret a moment of it, and i wouldn't do it any other way if i could do it again, but i also firmly believe that every person (CF or not) has to find his/her own way to contribute and feel part of the world. there is no right path: whether it be a particular job/profession, school, marriage, whatever. the point it to LIVE, to be happy, and hopefully to make some sort of difference. honestly, you're on the right path just by asking these questions.
<br />
<br />my observation is that it sounds as though you're feeling a little left out. your dad's comments might have stung a bit b/c you feel that you would LIKE to work (or something) but you also feel held back by your disease. and to be honest, that's the only part of your story that i think you need to be worried about right now: making yourself feel as though you are stronger than CF, and that it can't stop you from really feeling GREAT about yourself. let go of everything else (within reason, of course - i am NOT saying neglect your health), and just take a couple of baby steps. ask yourself if there's something you would like to do that doesn't require a huge commitment right off the back. some good examples: photography (been mentioned), painting or art, writing, or some other sort of personal improvement project. volunteering is great, of course, and if you need a little extra cash there are some awesome jobs that could keep you active without being too stressful. do you enjoy animals? pet sitting or dog walking could be fun. just be careful if you have allergies and i don't recommend taking care of birds. or if you enjoy exercise maybe set a goal in that field. running or walking a 5k in your area would be awesome for your health and your spirits, and would TOTALLY make your family proud. also, lots of places offer short classes in interesting subjects like art, acting, cooking, writing, or other skills. great way to meet people, fun way to get out of the house, and some of the skills can transfer directly to things that will let you help out around the house. trust me, your parents won't complain!
<br />
<br />final suggestion: at the very least, try weaning yourself OFF the activities that you feel might be making your lethargic or a little unhappy. set a computer limit (like "i will spend 4 hours a day without even looking at my computer or TV!") and just do ANYTHING else. read, walk, cook, play, write, whatever. try out things that you think you'll enjoy and i bet you'll be right -- after all, you know yourself best.
<br />
<br />rock cf foundation has an exercise challenge for people with CF right now, and cystic gal (the blog -- google it) has a CF poetry contest this upcoming month. check out both of those for fun ways to connect with the CF community and set a fun, non-stressful goal for yourself. good luck!!
<br />
<br />my observation is that it sounds as though you're feeling a little left out. your dad's comments might have stung a bit b/c you feel that you would LIKE to work (or something) but you also feel held back by your disease. and to be honest, that's the only part of your story that i think you need to be worried about right now: making yourself feel as though you are stronger than CF, and that it can't stop you from really feeling GREAT about yourself. let go of everything else (within reason, of course - i am NOT saying neglect your health), and just take a couple of baby steps. ask yourself if there's something you would like to do that doesn't require a huge commitment right off the back. some good examples: photography (been mentioned), painting or art, writing, or some other sort of personal improvement project. volunteering is great, of course, and if you need a little extra cash there are some awesome jobs that could keep you active without being too stressful. do you enjoy animals? pet sitting or dog walking could be fun. just be careful if you have allergies and i don't recommend taking care of birds. or if you enjoy exercise maybe set a goal in that field. running or walking a 5k in your area would be awesome for your health and your spirits, and would TOTALLY make your family proud. also, lots of places offer short classes in interesting subjects like art, acting, cooking, writing, or other skills. great way to meet people, fun way to get out of the house, and some of the skills can transfer directly to things that will let you help out around the house. trust me, your parents won't complain!
<br />
<br />final suggestion: at the very least, try weaning yourself OFF the activities that you feel might be making your lethargic or a little unhappy. set a computer limit (like "i will spend 4 hours a day without even looking at my computer or TV!") and just do ANYTHING else. read, walk, cook, play, write, whatever. try out things that you think you'll enjoy and i bet you'll be right -- after all, you know yourself best.
<br />
<br />rock cf foundation has an exercise challenge for people with CF right now, and cystic gal (the blog -- google it) has a CF poetry contest this upcoming month. check out both of those for fun ways to connect with the CF community and set a fun, non-stressful goal for yourself. good luck!!
sunshine5637
New member
Hi...I'm a little late in the conversation but wanted to add a couple of things I didn't see listed (if it is and just didn't see it, I'm sorry!!)
I, too, have had a last rough month and a half-I've gotten better but have a long way to go to get back to where I was. I got some bacteria that I can't seem to shake...so I've had to learn to toughen up and get into a routine of taking care of myself. Everyone's suggestions are great (I learned from them, too!!) but I wanted to mention two things that have helped me tremendously during my tough last month or so and that is you need to have DETERMINATION and FAITH!!
Remember you CAN beat this...and like NYClawgirl said, one baby step at a time.
If you need encouragement...we're all here! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I LOVEEEEE this forum!!!
I, too, have had a last rough month and a half-I've gotten better but have a long way to go to get back to where I was. I got some bacteria that I can't seem to shake...so I've had to learn to toughen up and get into a routine of taking care of myself. Everyone's suggestions are great (I learned from them, too!!) but I wanted to mention two things that have helped me tremendously during my tough last month or so and that is you need to have DETERMINATION and FAITH!!
Remember you CAN beat this...and like NYClawgirl said, one baby step at a time.
If you need encouragement...we're all here! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I LOVEEEEE this forum!!!
sunshine5637
New member
Hi...I'm a little late in the conversation but wanted to add a couple of things I didn't see listed (if it is and just didn't see it, I'm sorry!!)
I, too, have had a last rough month and a half-I've gotten better but have a long way to go to get back to where I was. I got some bacteria that I can't seem to shake...so I've had to learn to toughen up and get into a routine of taking care of myself. Everyone's suggestions are great (I learned from them, too!!) but I wanted to mention two things that have helped me tremendously during my tough last month or so and that is you need to have DETERMINATION and FAITH!!
Remember you CAN beat this...and like NYClawgirl said, one baby step at a time.
If you need encouragement...we're all here! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I LOVEEEEE this forum!!!
I, too, have had a last rough month and a half-I've gotten better but have a long way to go to get back to where I was. I got some bacteria that I can't seem to shake...so I've had to learn to toughen up and get into a routine of taking care of myself. Everyone's suggestions are great (I learned from them, too!!) but I wanted to mention two things that have helped me tremendously during my tough last month or so and that is you need to have DETERMINATION and FAITH!!
Remember you CAN beat this...and like NYClawgirl said, one baby step at a time.
If you need encouragement...we're all here! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I LOVEEEEE this forum!!!
sunshine5637
New member
Hi...I'm a little late in the conversation but wanted to add a couple of things I didn't see listed (if it is and just didn't see it, I'm sorry!!)
<br />
<br />I, too, have had a last rough month and a half-I've gotten better but have a long way to go to get back to where I was. I got some bacteria that I can't seem to shake...so I've had to learn to toughen up and get into a routine of taking care of myself. Everyone's suggestions are great (I learned from them, too!!) but I wanted to mention two things that have helped me tremendously during my tough last month or so and that is you need to have DETERMINATION and FAITH!!
<br />
<br />Remember you CAN beat this...and like NYClawgirl said, one baby step at a time.
<br />
<br />If you need encouragement...we're all here! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I LOVEEEEE this forum!!!
<br />
<br />I, too, have had a last rough month and a half-I've gotten better but have a long way to go to get back to where I was. I got some bacteria that I can't seem to shake...so I've had to learn to toughen up and get into a routine of taking care of myself. Everyone's suggestions are great (I learned from them, too!!) but I wanted to mention two things that have helped me tremendously during my tough last month or so and that is you need to have DETERMINATION and FAITH!!
<br />
<br />Remember you CAN beat this...and like NYClawgirl said, one baby step at a time.
<br />
<br />If you need encouragement...we're all here! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I LOVEEEEE this forum!!!