<div><br></div><div>I had someone tell me that I have ALLOWED CF to take over my life. My response to them was "what choice do I have"?? They even said that I have allowed the illness to affect me emotionally and spiritually. My reaction was "well, yeah". The person I was talking to thought that my life should be compartmentalized and CF should only fit in certain part of my life.</div><div><br></div><div>Is there an aspect in your life that CF does not effect?? If you have a part of your life that CF doesn't effect... how do you do it?? </div><div><br></div><div><br></div>
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CF effects all aspects of your life?
- Thread starter mamerth
- Start date
<br>I had someone tell me that I have ALLOWED CF to take over my life. My response to them was "what choice do I have"?? They even said that I have allowed the illness to affect me emotionally and spiritually. My reaction was "well, yeah". The person I was talking to thought that my life should be compartmentalized and CF should only fit in certain part of my life.<br>Is there an aspect in your life that CF does not effect?? If you have a part of your life that CF doesn't effect... how do you do it?? <br><br>
<br>I had someone tell me that I have ALLOWED CF to take over my life. My response to them was "what choice do I have"?? They even said that I have allowed the illness to affect me emotionally and spiritually. My reaction was "well, yeah". The person I was talking to thought that my life should be compartmentalized and CF should only fit in certain part of my life.<br>Is there an aspect in your life that CF does not effect?? If you have a part of your life that CF doesn't effect... how do you do it?? <br><br>
<P>I think I'd tell that person to take a flying leap or at least say "walk in MY shoes". Gimme a break! So sorry you're having to deal with such people. <img src="i/expressions/face-icon-small-sad.gif" border="0"></P>
<P> </P>
<P>We try to make sure DS leads are normal of a life as possible, but CF affects everything. Making sure we take along enzymes just in case he has a snack somewhere. Water for that matter The other day he grabbed a candybar at the store and I had to rush home because I didn't have anything for him to drink with his enzymes. </P>
<P> </P>
<P>Scheduling events around treatments. Packing twice as much stuff for an impromptu sleep over at his grandparents house -- vest, nebs, meds....</P>
<P> </P>
<P>Worrying about holidays and guests showing up sick, claiming they have 'just a cold'. </P>
<P> </P>
<P>We try to make sure DS leads are normal of a life as possible, but CF affects everything. Making sure we take along enzymes just in case he has a snack somewhere. Water for that matter The other day he grabbed a candybar at the store and I had to rush home because I didn't have anything for him to drink with his enzymes. </P>
<P> </P>
<P>Scheduling events around treatments. Packing twice as much stuff for an impromptu sleep over at his grandparents house -- vest, nebs, meds....</P>
<P> </P>
<P>Worrying about holidays and guests showing up sick, claiming they have 'just a cold'. </P>
<P>I think I'd tell that person to take a flying leap or at least say "walk in MY shoes". Gimme a break! So sorry you're having to deal with such people. <img src="i/expressions/face-icon-small-sad.gif" border="0"></P>
<P></P>
<P>We try to make sure DS leads are normal of a life as possible, but CF affects everything. Making sure we take along enzymes just in case he has a snack somewhere. Water for that matter The other day he grabbed a candybar at the store and I had to rush home because I didn't have anything for him to drink with his enzymes. </P>
<P></P>
<P>Scheduling events around treatments. Packing twice as much stuff for an impromptu sleep over at his grandparents house -- vest, nebs, meds....</P>
<P></P>
<P>Worrying about holidays and guests showing up sick, claiming they have 'just a cold'. </P>
<P></P>
<P>We try to make sure DS leads are normal of a life as possible, but CF affects everything. Making sure we take along enzymes just in case he has a snack somewhere. Water for that matter The other day he grabbed a candybar at the store and I had to rush home because I didn't have anything for him to drink with his enzymes. </P>
<P></P>
<P>Scheduling events around treatments. Packing twice as much stuff for an impromptu sleep over at his grandparents house -- vest, nebs, meds....</P>
<P></P>
<P>Worrying about holidays and guests showing up sick, claiming they have 'just a cold'. </P>
<P>I think I'd tell that person to take a flying leap or at least say "walk in MY shoes". Gimme a break! So sorry you're having to deal with such people. <img src="i/expressions/face-icon-small-sad.gif" border="0"></P>
<P></P>
<P>We try to make sure DS leads are normal of a life as possible, but CF affects everything. Making sure we take along enzymes just in case he has a snack somewhere. Water for that matter The other day he grabbed a candybar at the store and I had to rush home because I didn't have anything for him to drink with his enzymes. </P>
<P></P>
<P>Scheduling events around treatments. Packing twice as much stuff for an impromptu sleep over at his grandparents house -- vest, nebs, meds....</P>
<P></P>
<P>Worrying about holidays and guests showing up sick, claiming they have 'just a cold'. </P>
<P></P>
<P>We try to make sure DS leads are normal of a life as possible, but CF affects everything. Making sure we take along enzymes just in case he has a snack somewhere. Water for that matter The other day he grabbed a candybar at the store and I had to rush home because I didn't have anything for him to drink with his enzymes. </P>
<P></P>
<P>Scheduling events around treatments. Packing twice as much stuff for an impromptu sleep over at his grandparents house -- vest, nebs, meds....</P>
<P></P>
<P>Worrying about holidays and guests showing up sick, claiming they have 'just a cold'. </P>
Here in the south, I'd look at that person and say "well bless your heart." I sure wish it didn't affect every aspect of my life, but at some point it just does. Breathing is kind of a big part of everything I do. And I'd love to meet anyone with any chronic illness that didn't "let" it affect them emotionally. It must be such a huge burden for that person to be so much smarter than everyone else in the world.
Here in the south, I'd look at that person and say "well bless your heart." I sure wish it didn't affect every aspect of my life, but at some point it just does. Breathing is kind of a big part of everything I do. And I'd love to meet anyone with any chronic illness that didn't "let" it affect them emotionally. It must be such a huge burden for that person to be so much smarter than everyone else in the world.
Here in the south, I'd look at that person and say "well bless your heart." I sure wish it didn't affect every aspect of my life, but at some point it just does. Breathing is kind of a big part of everything I do. And I'd love to meet anyone with any chronic illness that didn't "let" it affect them emotionally. It must be such a huge burden for that person to be so much smarter than everyone else in the world.
How can they say that when they don't have a clue what CF entails? This isn't the type of disease where you pop a pill and go on your merry way....From the time we wake up until the time we fall asleep, CF is ever present with all of the treatments, the coughing, shortness of breath, pills, blood sugar checks, pain meds for CFRA etc....I wish that person could walk in your shoes for a day to fully understand why CF would be on your mind a good part of the day. We have to be hyper vigilant as far as catching bugs go, I sometimes get criticized for screening family functions for snotty nosed, coughing people so that I can avoid them. They don't seem to understand that a simple cold can easily turn into a very serious infection landing me in a hospital for weeks on end.
As much as I hate to say it, CF does take up so much of my day....I do try to do things that don't remind me of CF, but even that can be difficult. A simple walk with my dog can prove to be difficult, I am out enjoying the crisp, autumn air but at the same time, I struggle after a block. I do read alot, watch movies, etc...do things that won't tax me too much and I enjoy them. I try to pace myself so that I don't feel so exhausted. Multi tasking is important so that I am able to do as much non CF things in my day as possible. I have often said to my sister that I wish that I could have just one day where I don't have to think about CF, it's treatments, it's side effects etc...and just feel great. What I could do in that blessed day if that were to ever come true....the time that would be freed up to just do anything <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hang in there, people like that may never understand the full impact that CF has on our lives unless they've been there up close and personal. Take time out for yourself, do things that are relaxing and not so physically demanding if you are short of breath etc so you can enjoy it.
Hugs, Jenn 39 w/CF
As much as I hate to say it, CF does take up so much of my day....I do try to do things that don't remind me of CF, but even that can be difficult. A simple walk with my dog can prove to be difficult, I am out enjoying the crisp, autumn air but at the same time, I struggle after a block. I do read alot, watch movies, etc...do things that won't tax me too much and I enjoy them. I try to pace myself so that I don't feel so exhausted. Multi tasking is important so that I am able to do as much non CF things in my day as possible. I have often said to my sister that I wish that I could have just one day where I don't have to think about CF, it's treatments, it's side effects etc...and just feel great. What I could do in that blessed day if that were to ever come true....the time that would be freed up to just do anything <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hang in there, people like that may never understand the full impact that CF has on our lives unless they've been there up close and personal. Take time out for yourself, do things that are relaxing and not so physically demanding if you are short of breath etc so you can enjoy it.
Hugs, Jenn 39 w/CF
How can they say that when they don't have a clue what CF entails? This isn't the type of disease where you pop a pill and go on your merry way....From the time we wake up until the time we fall asleep, CF is ever present with all of the treatments, the coughing, shortness of breath, pills, blood sugar checks, pain meds for CFRA etc....I wish that person could walk in your shoes for a day to fully understand why CF would be on your mind a good part of the day. We have to be hyper vigilant as far as catching bugs go, I sometimes get criticized for screening family functions for snotty nosed, coughing people so that I can avoid them. They don't seem to understand that a simple cold can easily turn into a very serious infection landing me in a hospital for weeks on end.
As much as I hate to say it, CF does take up so much of my day....I do try to do things that don't remind me of CF, but even that can be difficult. A simple walk with my dog can prove to be difficult, I am out enjoying the crisp, autumn air but at the same time, I struggle after a block. I do read alot, watch movies, etc...do things that won't tax me too much and I enjoy them. I try to pace myself so that I don't feel so exhausted. Multi tasking is important so that I am able to do as much non CF things in my day as possible. I have often said to my sister that I wish that I could have just one day where I don't have to think about CF, it's treatments, it's side effects etc...and just feel great. What I could do in that blessed day if that were to ever come true....the time that would be freed up to just do anything <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hang in there, people like that may never understand the full impact that CF has on our lives unless they've been there up close and personal. Take time out for yourself, do things that are relaxing and not so physically demanding if you are short of breath etc so you can enjoy it.
Hugs, Jenn 39 w/CF
As much as I hate to say it, CF does take up so much of my day....I do try to do things that don't remind me of CF, but even that can be difficult. A simple walk with my dog can prove to be difficult, I am out enjoying the crisp, autumn air but at the same time, I struggle after a block. I do read alot, watch movies, etc...do things that won't tax me too much and I enjoy them. I try to pace myself so that I don't feel so exhausted. Multi tasking is important so that I am able to do as much non CF things in my day as possible. I have often said to my sister that I wish that I could have just one day where I don't have to think about CF, it's treatments, it's side effects etc...and just feel great. What I could do in that blessed day if that were to ever come true....the time that would be freed up to just do anything <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hang in there, people like that may never understand the full impact that CF has on our lives unless they've been there up close and personal. Take time out for yourself, do things that are relaxing and not so physically demanding if you are short of breath etc so you can enjoy it.
Hugs, Jenn 39 w/CF
How can they say that when they don't have a clue what CF entails? This isn't the type of disease where you pop a pill and go on your merry way....From the time we wake up until the time we fall asleep, CF is ever present with all of the treatments, the coughing, shortness of breath, pills, blood sugar checks, pain meds for CFRA etc....I wish that person could walk in your shoes for a day to fully understand why CF would be on your mind a good part of the day. We have to be hyper vigilant as far as catching bugs go, I sometimes get criticized for screening family functions for snotty nosed, coughing people so that I can avoid them. They don't seem to understand that a simple cold can easily turn into a very serious infection landing me in a hospital for weeks on end.
<br />
<br />As much as I hate to say it, CF does take up so much of my day....I do try to do things that don't remind me of CF, but even that can be difficult. A simple walk with my dog can prove to be difficult, I am out enjoying the crisp, autumn air but at the same time, I struggle after a block. I do read alot, watch movies, etc...do things that won't tax me too much and I enjoy them. I try to pace myself so that I don't feel so exhausted. Multi tasking is important so that I am able to do as much non CF things in my day as possible. I have often said to my sister that I wish that I could have just one day where I don't have to think about CF, it's treatments, it's side effects etc...and just feel great. What I could do in that blessed day if that were to ever come true....the time that would be freed up to just do anything <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Hang in there, people like that may never understand the full impact that CF has on our lives unless they've been there up close and personal. Take time out for yourself, do things that are relaxing and not so physically demanding if you are short of breath etc so you can enjoy it.
<br />
<br />Hugs, Jenn 39 w/CF
<br />
<br />As much as I hate to say it, CF does take up so much of my day....I do try to do things that don't remind me of CF, but even that can be difficult. A simple walk with my dog can prove to be difficult, I am out enjoying the crisp, autumn air but at the same time, I struggle after a block. I do read alot, watch movies, etc...do things that won't tax me too much and I enjoy them. I try to pace myself so that I don't feel so exhausted. Multi tasking is important so that I am able to do as much non CF things in my day as possible. I have often said to my sister that I wish that I could have just one day where I don't have to think about CF, it's treatments, it's side effects etc...and just feel great. What I could do in that blessed day if that were to ever come true....the time that would be freed up to just do anything <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Hang in there, people like that may never understand the full impact that CF has on our lives unless they've been there up close and personal. Take time out for yourself, do things that are relaxing and not so physically demanding if you are short of breath etc so you can enjoy it.
<br />
<br />Hugs, Jenn 39 w/CF
D
Deb
Guest
While I agree that CF effects us every minute of every day (or with every breath we take) I firmly believe that you can't let it define you. You are much more than your disease. The person who made the insensitive comment has no idea what life is like and shouldn't be judging you. That being said...focus on YOU and not your disease.
I have cystic fibrosis, but it does not have me.
I have cystic fibrosis, but it does not have me.
D
Deb
Guest
While I agree that CF effects us every minute of every day (or with every breath we take) I firmly believe that you can't let it define you. You are much more than your disease. The person who made the insensitive comment has no idea what life is like and shouldn't be judging you. That being said...focus on YOU and not your disease.
I have cystic fibrosis, but it does not have me.
I have cystic fibrosis, but it does not have me.
D
Deb
Guest
While I agree that CF effects us every minute of every day (or with every breath we take) I firmly believe that you can't let it define you. You are much more than your disease. The person who made the insensitive comment has no idea what life is like and shouldn't be judging you. That being said...focus on YOU and not your disease.
<br /> I have cystic fibrosis, but it does not have me.
<br /> I have cystic fibrosis, but it does not have me.
M
Mom2mouse
Guest
How about you ask that person to breathe through a straw non-stop for a day so that they can experience just a very small aspect of "a day in the life of someone with CF"?
M
Mom2mouse
Guest
How about you ask that person to breathe through a straw non-stop for a day so that they can experience just a very small aspect of "a day in the life of someone with CF"?