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I'm unhealthy again.

I

iwantmypup

New member
Mods, feel free to move this, as I am a teenager, but I'm seeking advice that adults can help with.
I have a feeling I've posted things like this before.
In Jan, I was in the hospital, got a gtube..lungs went from 50% to 100%. Now, I am not sure..but I believe they are back at 50%.
My weight has also dropped a few pounds because the machine was messing up.
I don't know what to do with myself.
I go into this cycle..hospital is great, but I don't do many of my meds at home. I can't keep doing this, I want to live a long life, and this isn't helping. I feel like crap, when I wake up I DREAD coughing because I know that I will be bringing a lot of stuff up..and many times I end up throwing up because of it.
I have zero energy.
I get out of breathe going up the stairs...
At PE Thursday we I couldn't even run a full lap..I ran 1/4th, after that I felt horrible.
What is wrong with me? Why does my mind not want to do these meds? I get so frustrated with myself..but I have no willpower.
 
I

iwantmypup

New member
Mods, feel free to move this, as I am a teenager, but I'm seeking advice that adults can help with.
I have a feeling I've posted things like this before.
In Jan, I was in the hospital, got a gtube..lungs went from 50% to 100%. Now, I am not sure..but I believe they are back at 50%.
My weight has also dropped a few pounds because the machine was messing up.
I don't know what to do with myself.
I go into this cycle..hospital is great, but I don't do many of my meds at home. I can't keep doing this, I want to live a long life, and this isn't helping. I feel like crap, when I wake up I DREAD coughing because I know that I will be bringing a lot of stuff up..and many times I end up throwing up because of it.
I have zero energy.
I get out of breathe going up the stairs...
At PE Thursday we I couldn't even run a full lap..I ran 1/4th, after that I felt horrible.
What is wrong with me? Why does my mind not want to do these meds? I get so frustrated with myself..but I have no willpower.
 
I

iwantmypup

New member
Mods, feel free to move this, as I am a teenager, but I'm seeking advice that adults can help with.
I have a feeling I've posted things like this before.
In Jan, I was in the hospital, got a gtube..lungs went from 50% to 100%. Now, I am not sure..but I believe they are back at 50%.
My weight has also dropped a few pounds because the machine was messing up.
I don't know what to do with myself.
I go into this cycle..hospital is great, but I don't do many of my meds at home. I can't keep doing this, I want to live a long life, and this isn't helping. I feel like crap, when I wake up I DREAD coughing because I know that I will be bringing a lot of stuff up..and many times I end up throwing up because of it.
I have zero energy.
I get out of breathe going up the stairs...
At PE Thursday we I couldn't even run a full lap..I ran 1/4th, after that I felt horrible.
What is wrong with me? Why does my mind not want to do these meds? I get so frustrated with myself..but I have no willpower.
 
I

iwantmypup

New member
Mods, feel free to move this, as I am a teenager, but I'm seeking advice that adults can help with.
I have a feeling I've posted things like this before.
In Jan, I was in the hospital, got a gtube..lungs went from 50% to 100%. Now, I am not sure..but I believe they are back at 50%.
My weight has also dropped a few pounds because the machine was messing up.
I don't know what to do with myself.
I go into this cycle..hospital is great, but I don't do many of my meds at home. I can't keep doing this, I want to live a long life, and this isn't helping. I feel like crap, when I wake up I DREAD coughing because I know that I will be bringing a lot of stuff up..and many times I end up throwing up because of it.
I have zero energy.
I get out of breathe going up the stairs...
At PE Thursday we I couldn't even run a full lap..I ran 1/4th, after that I felt horrible.
What is wrong with me? Why does my mind not want to do these meds? I get so frustrated with myself..but I have no willpower.
 
I

iwantmypup

New member
Mods, feel free to move this, as I am a teenager, but I'm seeking advice that adults can help with.
<br />I have a feeling I've posted things like this before.
<br />In Jan, I was in the hospital, got a gtube..lungs went from 50% to 100%. Now, I am not sure..but I believe they are back at 50%.
<br />My weight has also dropped a few pounds because the machine was messing up.
<br />I don't know what to do with myself.
<br />I go into this cycle..hospital is great, but I don't do many of my meds at home. I can't keep doing this, I want to live a long life, and this isn't helping. I feel like crap, when I wake up I DREAD coughing because I know that I will be bringing a lot of stuff up..and many times I end up throwing up because of it.
<br />I have zero energy.
<br />I get out of breathe going up the stairs...
<br />At PE Thursday we I couldn't even run a full lap..I ran 1/4th, after that I felt horrible.
<br />What is wrong with me? Why does my mind not want to do these meds? I get so frustrated with myself..but I have no willpower.
 
C

chrissyd

New member
Years ago when I was first diagnosed I used to "forget" my meds. I think it was because in my mind I didn't believe I was that sick. Then I would get worse and get new meds and everything would be going well for a while...and then I would fall right back into my old habit.

Do you have anyone who can help you figure out a way to remember that works for you? Mom or Dad? Best friend?
It took me a while but I got into a grove. Maybe you just need to find yours...

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
Years ago when I was first diagnosed I used to "forget" my meds. I think it was because in my mind I didn't believe I was that sick. Then I would get worse and get new meds and everything would be going well for a while...and then I would fall right back into my old habit.

Do you have anyone who can help you figure out a way to remember that works for you? Mom or Dad? Best friend?
It took me a while but I got into a grove. Maybe you just need to find yours...

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
Years ago when I was first diagnosed I used to "forget" my meds. I think it was because in my mind I didn't believe I was that sick. Then I would get worse and get new meds and everything would be going well for a while...and then I would fall right back into my old habit.

Do you have anyone who can help you figure out a way to remember that works for you? Mom or Dad? Best friend?
It took me a while but I got into a grove. Maybe you just need to find yours...

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
Years ago when I was first diagnosed I used to "forget" my meds. I think it was because in my mind I didn't believe I was that sick. Then I would get worse and get new meds and everything would be going well for a while...and then I would fall right back into my old habit.

Do you have anyone who can help you figure out a way to remember that works for you? Mom or Dad? Best friend?
It took me a while but I got into a grove. Maybe you just need to find yours...

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
Years ago when I was first diagnosed I used to "forget" my meds. I think it was because in my mind I didn't believe I was that sick. Then I would get worse and get new meds and everything would be going well for a while...and then I would fall right back into my old habit.
<br />
<br />Do you have anyone who can help you figure out a way to remember that works for you? Mom or Dad? Best friend?
<br />It took me a while but I got into a grove. Maybe you just need to find yours...
<br />
<br /><img src="i/expressions/rose.gif" border="0">
 
S

Skye

New member
I agree with Chrissy....it kind of takes finding your groove. You don't want to wait for a hospitalization that really kicks you into gear or scares you into being compliant. You want to be proactive now. I would challenge you to sit down and try to come up with some kind of regular routine that you think you can stick with that includes your nebs, meds, CPT, and some exercise. Make a strong commitment to that routine for a set amount of time and then see how much better your quality of life is overall and especially in the morning when you wake up.

That might just motivate you to stay with it. Your quality of life is soooooo much better when you have a routine that keeps your lungs clear. Then I would also read some of Amy's blog.."no excuses". I don't have time to post the link right now. I will come back later or maybe someone else can. I would particularly look at the "Warwick" letter. You have an opportunity now to be proactive in order to take advantage of all of the drugs that are in the CF pipeline. CF can be unpredictable; but, I say TAKE control of those things you have control over like compliance and motivation! Please keep us updated because we DO care about you here.
 
S

Skye

New member
I agree with Chrissy....it kind of takes finding your groove. You don't want to wait for a hospitalization that really kicks you into gear or scares you into being compliant. You want to be proactive now. I would challenge you to sit down and try to come up with some kind of regular routine that you think you can stick with that includes your nebs, meds, CPT, and some exercise. Make a strong commitment to that routine for a set amount of time and then see how much better your quality of life is overall and especially in the morning when you wake up.

That might just motivate you to stay with it. Your quality of life is soooooo much better when you have a routine that keeps your lungs clear. Then I would also read some of Amy's blog.."no excuses". I don't have time to post the link right now. I will come back later or maybe someone else can. I would particularly look at the "Warwick" letter. You have an opportunity now to be proactive in order to take advantage of all of the drugs that are in the CF pipeline. CF can be unpredictable; but, I say TAKE control of those things you have control over like compliance and motivation! Please keep us updated because we DO care about you here.
 
S

Skye

New member
I agree with Chrissy....it kind of takes finding your groove. You don't want to wait for a hospitalization that really kicks you into gear or scares you into being compliant. You want to be proactive now. I would challenge you to sit down and try to come up with some kind of regular routine that you think you can stick with that includes your nebs, meds, CPT, and some exercise. Make a strong commitment to that routine for a set amount of time and then see how much better your quality of life is overall and especially in the morning when you wake up.

That might just motivate you to stay with it. Your quality of life is soooooo much better when you have a routine that keeps your lungs clear. Then I would also read some of Amy's blog.."no excuses". I don't have time to post the link right now. I will come back later or maybe someone else can. I would particularly look at the "Warwick" letter. You have an opportunity now to be proactive in order to take advantage of all of the drugs that are in the CF pipeline. CF can be unpredictable; but, I say TAKE control of those things you have control over like compliance and motivation! Please keep us updated because we DO care about you here.
 
S

Skye

New member
I agree with Chrissy....it kind of takes finding your groove. You don't want to wait for a hospitalization that really kicks you into gear or scares you into being compliant. You want to be proactive now. I would challenge you to sit down and try to come up with some kind of regular routine that you think you can stick with that includes your nebs, meds, CPT, and some exercise. Make a strong commitment to that routine for a set amount of time and then see how much better your quality of life is overall and especially in the morning when you wake up.

That might just motivate you to stay with it. Your quality of life is soooooo much better when you have a routine that keeps your lungs clear. Then I would also read some of Amy's blog.."no excuses". I don't have time to post the link right now. I will come back later or maybe someone else can. I would particularly look at the "Warwick" letter. You have an opportunity now to be proactive in order to take advantage of all of the drugs that are in the CF pipeline. CF can be unpredictable; but, I say TAKE control of those things you have control over like compliance and motivation! Please keep us updated because we DO care about you here.
 
S

Skye

New member
I agree with Chrissy....it kind of takes finding your groove. You don't want to wait for a hospitalization that really kicks you into gear or scares you into being compliant. You want to be proactive now. I would challenge you to sit down and try to come up with some kind of regular routine that you think you can stick with that includes your nebs, meds, CPT, and some exercise. Make a strong commitment to that routine for a set amount of time and then see how much better your quality of life is overall and especially in the morning when you wake up.
<br />
<br />That might just motivate you to stay with it. Your quality of life is soooooo much better when you have a routine that keeps your lungs clear. Then I would also read some of Amy's blog.."no excuses". I don't have time to post the link right now. I will come back later or maybe someone else can. I would particularly look at the "Warwick" letter. You have an opportunity now to be proactive in order to take advantage of all of the drugs that are in the CF pipeline. CF can be unpredictable; but, I say TAKE control of those things you have control over like compliance and motivation! Please keep us updated because we DO care about you here.
 
B

bethylove

Guest
Hi,
when I was in high school I never wanted to do my meds. Somehow it slid by unnoticed, but I chalk that up to being super active. In college I turned into a sloth. I couldn't walk to class, I dreaded getting up in the morning, my roommates were constantly asking me if I was 'going to die on them' , and it was a struggle to sit down and bring myself to do my meds.

What I found helped? Well, I still struggle being 100% compliant, but I sat down one day with my beloved roommate and just let everything go, everything I hated aobut life, everything I loved, and most importantly everything I thought I couldn't do, or wouldn't be able to do. And you know what she said to me, "you're crazy you can do anything you want" And it's true. I mean it might be slow at first but it's true. So I thought about one goal to focus on, one goal in the future. Something personal. Something that you feel really strong about. For me it's having children. I know I want to have children when i'm older, but I can't do that if i'm not doing my meds. So on those days I can't bring myself to do it, or it just seems worthless think of my one goal, and that usually is enough to get me up and doing my meds.

PM if you want to talk. =)
 
B

bethylove

Guest
Hi,
when I was in high school I never wanted to do my meds. Somehow it slid by unnoticed, but I chalk that up to being super active. In college I turned into a sloth. I couldn't walk to class, I dreaded getting up in the morning, my roommates were constantly asking me if I was 'going to die on them' , and it was a struggle to sit down and bring myself to do my meds.

What I found helped? Well, I still struggle being 100% compliant, but I sat down one day with my beloved roommate and just let everything go, everything I hated aobut life, everything I loved, and most importantly everything I thought I couldn't do, or wouldn't be able to do. And you know what she said to me, "you're crazy you can do anything you want" And it's true. I mean it might be slow at first but it's true. So I thought about one goal to focus on, one goal in the future. Something personal. Something that you feel really strong about. For me it's having children. I know I want to have children when i'm older, but I can't do that if i'm not doing my meds. So on those days I can't bring myself to do it, or it just seems worthless think of my one goal, and that usually is enough to get me up and doing my meds.

PM if you want to talk. =)
 
B

bethylove

Guest
Hi,
when I was in high school I never wanted to do my meds. Somehow it slid by unnoticed, but I chalk that up to being super active. In college I turned into a sloth. I couldn't walk to class, I dreaded getting up in the morning, my roommates were constantly asking me if I was 'going to die on them' , and it was a struggle to sit down and bring myself to do my meds.

What I found helped? Well, I still struggle being 100% compliant, but I sat down one day with my beloved roommate and just let everything go, everything I hated aobut life, everything I loved, and most importantly everything I thought I couldn't do, or wouldn't be able to do. And you know what she said to me, "you're crazy you can do anything you want" And it's true. I mean it might be slow at first but it's true. So I thought about one goal to focus on, one goal in the future. Something personal. Something that you feel really strong about. For me it's having children. I know I want to have children when i'm older, but I can't do that if i'm not doing my meds. So on those days I can't bring myself to do it, or it just seems worthless think of my one goal, and that usually is enough to get me up and doing my meds.

PM if you want to talk. =)
 
B

bethylove

Guest
Hi,
when I was in high school I never wanted to do my meds. Somehow it slid by unnoticed, but I chalk that up to being super active. In college I turned into a sloth. I couldn't walk to class, I dreaded getting up in the morning, my roommates were constantly asking me if I was 'going to die on them' , and it was a struggle to sit down and bring myself to do my meds.

What I found helped? Well, I still struggle being 100% compliant, but I sat down one day with my beloved roommate and just let everything go, everything I hated aobut life, everything I loved, and most importantly everything I thought I couldn't do, or wouldn't be able to do. And you know what she said to me, "you're crazy you can do anything you want" And it's true. I mean it might be slow at first but it's true. So I thought about one goal to focus on, one goal in the future. Something personal. Something that you feel really strong about. For me it's having children. I know I want to have children when i'm older, but I can't do that if i'm not doing my meds. So on those days I can't bring myself to do it, or it just seems worthless think of my one goal, and that usually is enough to get me up and doing my meds.

PM if you want to talk. =)
 
B

bethylove

Guest
Hi,
<br />when I was in high school I never wanted to do my meds. Somehow it slid by unnoticed, but I chalk that up to being super active. In college I turned into a sloth. I couldn't walk to class, I dreaded getting up in the morning, my roommates were constantly asking me if I was 'going to die on them' , and it was a struggle to sit down and bring myself to do my meds.
<br />
<br />What I found helped? Well, I still struggle being 100% compliant, but I sat down one day with my beloved roommate and just let everything go, everything I hated aobut life, everything I loved, and most importantly everything I thought I couldn't do, or wouldn't be able to do. And you know what she said to me, "you're crazy you can do anything you want" And it's true. I mean it might be slow at first but it's true. So I thought about one goal to focus on, one goal in the future. Something personal. Something that you feel really strong about. For me it's having children. I know I want to have children when i'm older, but I can't do that if i'm not doing my meds. So on those days I can't bring myself to do it, or it just seems worthless think of my one goal, and that usually is enough to get me up and doing my meds.
<br />
<br />PM if you want to talk. =)
 
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