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How Does Cystic Fibrosis Effect Your Lifestyle?
- Thread starter anonymous
- Start date
Emily65Roses
New member
We'll be happy to help you with personal answers. You're right, they are more helpful, depending on what you're looking for.
However, you need to be a little more specific. Asking how CF affects our lives is like asking for a 50 page novel of an answer. If you can narrow it down, I'll certainly come back and give you any information I can.
However, you need to be a little more specific. Asking how CF affects our lives is like asking for a 50 page novel of an answer. If you can narrow it down, I'll certainly come back and give you any information I can.
Mockingbird
New member
Here is something that a lot of people on this site agree with. Perhaps you can use it.
Link: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=5438&highlight_key=y&keyword1=boxing">http://forums.cysticfibrosis.c..._key=y&keyword1=boxing</a>
Link: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=5438&highlight_key=y&keyword1=boxing">http://forums.cysticfibrosis.c..._key=y&keyword1=boxing</a>
Hm by what I exactly mean is, how it makes your life different than others. Do you do the same things people without the disease do? Are there certain things that chornically happen such as doctor visits, etc. How does it change your life from others? Just a vauge'ish, but not too vague answer would be fine, thanks.
Thanks mockingbird, reading through it, so far it helps a lot.
Thanks mockingbird, reading through it, so far it helps a lot.
I pretty much do what other people do. It has gotten harder as my CF progressed which is what it does. I need more time to take care of myself so I know longer work. I have a daughter & I volunteer in school. I throw parties & support my daughter in sports etc. What would be different is that I cant do it all as easily or as quickly as someone else. I have to make sure my breathing treatments are done so that I can make it through the event or activity. For me (not the same for all) its hard to be spontaneous, but in general I can do most anything!
Emily65Roses
New member
Okay still vague, so this may or may not help, I'm not sure. But I'm going to give you very basic info. I do some of the same things. I go to school. But I don't work. I can't run anymore. I avoid going up stairs at all costs. One flight will make me short of breath too much to bother with. I can't laugh anymore without it turning into a coughing fit. Doctor visits are every 3 months, at my CF center, Yale New Haven Hospital. It changes my life a lot. Another CFer on this site, SeanDavis, said it best:
We work 10 times harder to feel half as good.
That pretty much says it all.
We work 10 times harder to feel half as good.
That pretty much says it all.
My son is still little and though he started life off with some major bumps, we are doing well with it as a family now. We have spent time grieving the idea of health we always imagined for our little one. We have spent time feeling guilty that though we conceived him in love, ultimately our genes gave him this thing called CF. We have also spent alot of time realizing what is truly important in life. We are finally makign our way to a place of hope...hope that with love, nutrition, therapy, and lots of freedom to explore life as a family, he will fulfil his destiny, whatever that is and in whatever time he has here on the earth. Each day I also feel I realize their is as much possibility for CF not affecting our lives much. I'd like to say we feel it is in the background until it isn't.
We try very hard to make CF only one very small word used to talk about who our son is...he is BEN first and foremost and always will be. We go to clinic every 3 months. He takes enzymes with every meal to help him digest his food...without them he can't take in the nutrients from his food. He will be starting chest physiotherapy with a vest (compressed air vibrates a vest they wear to help keep lungs free of mucus).
We are reminded daily how precious life and breathe really are and we choose to use this reminder to go after life as we never have before. I believe attitude is everything in this life, CF or another challenge. I practice letting go of fear and holding onto hope each time I catch myself worrying about the future. It helps me come back to the present moment and realize he is healthy and vibrant and going strong.
This is our perspective from a parents view. Good luck with your project.
We try very hard to make CF only one very small word used to talk about who our son is...he is BEN first and foremost and always will be. We go to clinic every 3 months. He takes enzymes with every meal to help him digest his food...without them he can't take in the nutrients from his food. He will be starting chest physiotherapy with a vest (compressed air vibrates a vest they wear to help keep lungs free of mucus).
We are reminded daily how precious life and breathe really are and we choose to use this reminder to go after life as we never have before. I believe attitude is everything in this life, CF or another challenge. I practice letting go of fear and holding onto hope each time I catch myself worrying about the future. It helps me come back to the present moment and realize he is healthy and vibrant and going strong.
This is our perspective from a parents view. Good luck with your project.
Emily65Roses
New member
Groups affected... I don't have the stats on me this instant, but I know it's whites more than anyone else. I believe Africans come next, then Asians. It's fairly rare among non-Caucasians.