Feeling bad more times than good

J

JustDucky

New member
I am the same age as you Jen and feel it too.....I am exhausted every day, it does not help that I am really anemic too. Just a thought, are you anemic as well? I know that it is hard enough to function with crappy lungs in itself, but add a depleted red blood cell count to it and you get that bone tired type of exhaustion that doesn't go away, even with rest. Might be worth checking into....

I remember when I used to run 3 miles without too many issues, this was all before my CF dx, I was only on inhalers for my "asthma" and antibiotics as needed for bronchitis but I was doing okay juggling a full time job as a nurse and a mom to two kids. Now, I am disabled and work hard to keep as healthy as possible, and am just tired too. When I have an infection, that fatigue is accentuated 100 times over (well, it seems that way)....

I also try to keep as active as possible even if it means walking the dog a block a day with my O2 tank cranked up when going uphill. It is hard to peel my sorry butt off of the sofa, but I do that for me as well as for my dog who looks forward to a quick jaunt in the neighborhood <img src="i/expressions/face-icon-small-smile.gif" border="0">

I have changed many of my activities to those that do not take up too much energy but are enjoyable such as crocheting, painting, drawing, reading etc.....I don't get too tired doing those things and it keeps my mind active. The finished products also make wonderful gifts at Christmastime lol.

Anyhow, I really do feel your frustration and my doc says the same thing, that it is the nature of CF. Last summer, I was active in my garden and felt great about growing my own food, this year, I could barely manage a herb garden for pete's sake! I have been on IV's 5 times this year and it seems like it doesn't take long before my lungs are junk again. Do you feel like tuneups don't clear you up as well as they used to? I feel that way, in the past, I would feel great after a clean out and feel that way for at least a few months. Now, even after 3 weeks of IV's, I feel better, but not great and my lungs don't feel "clean"....it's hard to explain that last one, but I used to feel squeaky clean even from the inside after a blast of IV's. These days, I still feel "sticky" and my color is right back to nasty after a few short weeks off IV's.

Rest when you can, your mind wants to do so much and your body is telling you to do otherwise. As hard as it is, listen to your body, I know it is hard when you have a husband and a house, but as I always say to my son whenever I feel like doing nothing, the dishes and laundry can wait until I am good and ready to do them <img src="i/expressions/face-icon-small-smile.gif" border="0">

I hope you feel better soon, sending hugs to you

Jenn 39 w/CF
 
J

JustDucky

New member
I am the same age as you Jen and feel it too.....I am exhausted every day, it does not help that I am really anemic too. Just a thought, are you anemic as well? I know that it is hard enough to function with crappy lungs in itself, but add a depleted red blood cell count to it and you get that bone tired type of exhaustion that doesn't go away, even with rest. Might be worth checking into....
<br />
<br />I remember when I used to run 3 miles without too many issues, this was all before my CF dx, I was only on inhalers for my "asthma" and antibiotics as needed for bronchitis but I was doing okay juggling a full time job as a nurse and a mom to two kids. Now, I am disabled and work hard to keep as healthy as possible, and am just tired too. When I have an infection, that fatigue is accentuated 100 times over (well, it seems that way)....
<br />
<br />I also try to keep as active as possible even if it means walking the dog a block a day with my O2 tank cranked up when going uphill. It is hard to peel my sorry butt off of the sofa, but I do that for me as well as for my dog who looks forward to a quick jaunt in the neighborhood <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />I have changed many of my activities to those that do not take up too much energy but are enjoyable such as crocheting, painting, drawing, reading etc.....I don't get too tired doing those things and it keeps my mind active. The finished products also make wonderful gifts at Christmastime lol.
<br />
<br />Anyhow, I really do feel your frustration and my doc says the same thing, that it is the nature of CF. Last summer, I was active in my garden and felt great about growing my own food, this year, I could barely manage a herb garden for pete's sake! I have been on IV's 5 times this year and it seems like it doesn't take long before my lungs are junk again. Do you feel like tuneups don't clear you up as well as they used to? I feel that way, in the past, I would feel great after a clean out and feel that way for at least a few months. Now, even after 3 weeks of IV's, I feel better, but not great and my lungs don't feel "clean"....it's hard to explain that last one, but I used to feel squeaky clean even from the inside after a blast of IV's. These days, I still feel "sticky" and my color is right back to nasty after a few short weeks off IV's.
<br />
<br />Rest when you can, your mind wants to do so much and your body is telling you to do otherwise. As hard as it is, listen to your body, I know it is hard when you have a husband and a house, but as I always say to my son whenever I feel like doing nothing, the dishes and laundry can wait until I am good and ready to do them <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />I hope you feel better soon, sending hugs to you
<br />
<br />Jenn 39 w/CF
 
L

Ldude916

New member
Hi Jennifer,
Great advice from Jenn above....I agree I know your frustration. Have you ever been tested for MAC? I know when I had falling FEV, loss of energy, not feeling well after just having IV's, etc., they found the MAC infection.

Have you ever tested your oxygen levels when working out to make sure they are at least > 90? Maybe if you are fatigued, you could join pulmonary rehab and they can monitor you while you work out and suggest a workout plan that would make you more energized on the days you aren't working out. I am 25% FEV and I go to rehab 3 days a week. I manage to have dinner ready for hubby the other 4 days a week =). Rehab has changed my life, actually. I used to not be able to get out of bed for very long, but now I'm at least up with the dogs, cooking dinner, doing treatments, eating and seeing friends/grocery shopping. BIG Improvement!

Do you work? That can certainly lead to exhaustion, too! I had to quit working and I sleep at least 12 hours a day. Such a difference in energy!

When I got really sick a few years ago, it was so hard to not blame myself....like "I could have done this better, why didn't my doctor find MAC sooner...., etc."....but I just realized that would not do any good. I would say you're allowed to be angry and sad for a little amount of time, but soon you will have to accept that this is a new baseline and educate yourself on the things you can do now to remain stable. It sounds like you have a great husband. Does he do any manual CPT on you? When I get sick (like now actually), my husband and mom do manual CPT for 40 minutes 2x's/day and I also do the vest 1-2 times a day. It's a lot of time involved, but it always helps me cough up way more stuff and get better sooner.

I think it's so sweet that you are thinking of your husband and his needs - but he's probably thinking mostly of your needs! It's so hard to accept that you cannot do the things you used to, but once you let go of that, you can start to heal mentally. I used to apologize to my husband ALL the time for having to take care of me....but he just said "stop because you take care of me in other ways outside of physical things like cooking. If I can help you physically, it's no match to what you give me in return emotionally." I thought about it, and it's true. Once I let go of the physical things and stopped worrying about it, I was happier and things became easier - I was able to support him emotionally (about his job and other things in life) that I realized I was neglecting due to always being consumed with anger/frustration/worry. Does that make sense? =)

*****, just hire a chef and a maid! Much love to you and good luck!!
 
L

Ldude916

New member
Hi Jennifer,
Great advice from Jenn above....I agree I know your frustration. Have you ever been tested for MAC? I know when I had falling FEV, loss of energy, not feeling well after just having IV's, etc., they found the MAC infection.

Have you ever tested your oxygen levels when working out to make sure they are at least > 90? Maybe if you are fatigued, you could join pulmonary rehab and they can monitor you while you work out and suggest a workout plan that would make you more energized on the days you aren't working out. I am 25% FEV and I go to rehab 3 days a week. I manage to have dinner ready for hubby the other 4 days a week =). Rehab has changed my life, actually. I used to not be able to get out of bed for very long, but now I'm at least up with the dogs, cooking dinner, doing treatments, eating and seeing friends/grocery shopping. BIG Improvement!

Do you work? That can certainly lead to exhaustion, too! I had to quit working and I sleep at least 12 hours a day. Such a difference in energy!

When I got really sick a few years ago, it was so hard to not blame myself....like "I could have done this better, why didn't my doctor find MAC sooner...., etc."....but I just realized that would not do any good. I would say you're allowed to be angry and sad for a little amount of time, but soon you will have to accept that this is a new baseline and educate yourself on the things you can do now to remain stable. It sounds like you have a great husband. Does he do any manual CPT on you? When I get sick (like now actually), my husband and mom do manual CPT for 40 minutes 2x's/day and I also do the vest 1-2 times a day. It's a lot of time involved, but it always helps me cough up way more stuff and get better sooner.

I think it's so sweet that you are thinking of your husband and his needs - but he's probably thinking mostly of your needs! It's so hard to accept that you cannot do the things you used to, but once you let go of that, you can start to heal mentally. I used to apologize to my husband ALL the time for having to take care of me....but he just said "stop because you take care of me in other ways outside of physical things like cooking. If I can help you physically, it's no match to what you give me in return emotionally." I thought about it, and it's true. Once I let go of the physical things and stopped worrying about it, I was happier and things became easier - I was able to support him emotionally (about his job and other things in life) that I realized I was neglecting due to always being consumed with anger/frustration/worry. Does that make sense? =)

*****, just hire a chef and a maid! Much love to you and good luck!!
 
L

Ldude916

New member
Hi Jennifer,
<br />Great advice from Jenn above....I agree I know your frustration. Have you ever been tested for MAC? I know when I had falling FEV, loss of energy, not feeling well after just having IV's, etc., they found the MAC infection.
<br />
<br />Have you ever tested your oxygen levels when working out to make sure they are at least > 90? Maybe if you are fatigued, you could join pulmonary rehab and they can monitor you while you work out and suggest a workout plan that would make you more energized on the days you aren't working out. I am 25% FEV and I go to rehab 3 days a week. I manage to have dinner ready for hubby the other 4 days a week =). Rehab has changed my life, actually. I used to not be able to get out of bed for very long, but now I'm at least up with the dogs, cooking dinner, doing treatments, eating and seeing friends/grocery shopping. BIG Improvement!
<br />
<br />Do you work? That can certainly lead to exhaustion, too! I had to quit working and I sleep at least 12 hours a day. Such a difference in energy!
<br />
<br />When I got really sick a few years ago, it was so hard to not blame myself....like "I could have done this better, why didn't my doctor find MAC sooner...., etc."....but I just realized that would not do any good. I would say you're allowed to be angry and sad for a little amount of time, but soon you will have to accept that this is a new baseline and educate yourself on the things you can do now to remain stable. It sounds like you have a great husband. Does he do any manual CPT on you? When I get sick (like now actually), my husband and mom do manual CPT for 40 minutes 2x's/day and I also do the vest 1-2 times a day. It's a lot of time involved, but it always helps me cough up way more stuff and get better sooner.
<br />
<br />I think it's so sweet that you are thinking of your husband and his needs - but he's probably thinking mostly of your needs! It's so hard to accept that you cannot do the things you used to, but once you let go of that, you can start to heal mentally. I used to apologize to my husband ALL the time for having to take care of me....but he just said "stop because you take care of me in other ways outside of physical things like cooking. If I can help you physically, it's no match to what you give me in return emotionally." I thought about it, and it's true. Once I let go of the physical things and stopped worrying about it, I was happier and things became easier - I was able to support him emotionally (about his job and other things in life) that I realized I was neglecting due to always being consumed with anger/frustration/worry. Does that make sense? =)
<br />
<br />*****, just hire a chef and a maid! Much love to you and good luck!!
 
B

beleache

New member
Hey Jen, <div><br></div><div> Great advice from the 2 posts above me & from almost ALL the posts lol ...  I would discuss all of this w/ your dr.  They may be missing something  !! </div><div><br></div><div> I know the ups & downs can be so discouraging / disappointing (especially  when you do what your supposed to do) etc. </div><div><br></div><div> I hope & pray you get some answers & feel better soon  {{{{{hugs}}}}}  to you ..</div><div><br></div><div>  <3  joni</div>
 
B

beleache

New member
Hey Jen,<br>Great advice from the 2 posts above me & from almost ALL the posts lol ... I would discuss all of this w/ your dr. They may be missing something !!<br>I know the ups & downs can be so discouraging / disappointing (especially when you do what your supposed to do) etc.<br>I hope & pray you get some answers & feel better soon {{{{{hugs}}}}} to you ..<br><3 joni
 
B

beleache

New member
Hey Jen,<br>Great advice from the 2 posts above me & from almost ALL the posts lol ... I would discuss all of this w/ your dr. They may be missing something !!<br>I know the ups & downs can be so discouraging / disappointing (especially when you do what your supposed to do) etc.<br>I hope & pray you get some answers & feel better soon {{{{{hugs}}}}} to you ..<br><3 joni
 
G

Giggles

New member
thanks for all the great replies. Makes me feel better! What is MAC? Does it show up in sputum cultures? Might be a good idea to see if I do loose o2 when working out? I will look into that. the red blood cell count thing is something I will look into too! thanks all you are FANTASTIC! Keep up the good fight!<br>
 
G

Giggles

New member
thanks for all the great replies. Makes me feel better! What is MAC? Does it show up in sputum cultures? Might be a good idea to see if I do loose o2 when working out? I will look into that. the red blood cell count thing is something I will look into too! thanks all you are FANTASTIC! Keep up the good fight!<br>
 
G

Giggles

New member
thanks for all the great replies. Makes me feel better! What is MAC? Does it show up in sputum cultures? Might be a good idea to see if I do loose o2 when working out? I will look into that. the red blood cell count thing is something I will look into too! thanks all you are FANTASTIC! Keep up the good fight!<br>
 
H

Havoc

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JustDucky</b></i> 



I remember when I used to run 3 miles without too many issues, this was all before my CF dx, I was only on inhalers for my "asthma" and antibiotics as needed for bronchitis but I was doing okay juggling a full time job as a nurse and a mom to two kids. </end quote></div><br><br>How long after your diagnosis of CF did you see a decline in your health status?  Also, what changed in your care routine at that time?<br>
 
H

Havoc

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JustDucky</b></i>



I remember when I used to run 3 miles without too many issues, this was all before my CF dx, I was only on inhalers for my "asthma" and antibiotics as needed for bronchitis but I was doing okay juggling a full time job as a nurse and a mom to two kids. </end quote><br><br>How long after your diagnosis of CF did you see a decline in your health status? Also, what changed in your care routine at that time?<br>
 
H

Havoc

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JustDucky</b></i>



I remember when I used to run 3 miles without too many issues, this was all before my CF dx, I was only on inhalers for my "asthma" and antibiotics as needed for bronchitis but I was doing okay juggling a full time job as a nurse and a mom to two kids. </end quote><br><br>How long after your diagnosis of CF did you see a decline in your health status? Also, what changed in your care routine at that time?<br>
 
L

Ldude916

New member
MAC is mycobacterium avium complex - it's a NON-TB germ that is not contageous, but is found in our environment. It can be difficult to detect in sputum. Your CF center would collect morning samples of your sputum until they get I think 2 TBLSP? (or more) and send it to a lab, which takes 6 weeks to get FULL results. Treatment for MAC is usually a very long course of antiboitics. I had 18 months of pills, but other people on here I see had extremely long IV treatments. Do a search on this forum for MAC and you will find TONS of questions on it.

MAC disease is very difficult to cure because it is hard for the medicines to reach the inside of the nodule or cavity. The usual length of treatment lasts for at least 15 to 18 months. In other words, a MAC patient should keep taking the medications for the prescribed length of time in order for the germs to be eliminated. If "super-bugs" (drug resistant germs) develop, then cultures would be taken and medications adjusted for efficacy and susceptibility of the 'bugs' to other antibiotic treatments. Current recommendations are to take the oral medicines until the sputum cultures do not grow the MAC for 12 months based on monthly sputum tests. (taken from http://www.maclungdisease.org/index.php?option=com_content&task=view&id=32%3Ciid=55)
 
L

Ldude916

New member
MAC is mycobacterium avium complex - it's a NON-TB germ that is not contageous, but is found in our environment. It can be difficult to detect in sputum. Your CF center would collect morning samples of your sputum until they get I think 2 TBLSP? (or more) and send it to a lab, which takes 6 weeks to get FULL results. Treatment for MAC is usually a very long course of antiboitics. I had 18 months of pills, but other people on here I see had extremely long IV treatments. Do a search on this forum for MAC and you will find TONS of questions on it.

MAC disease is very difficult to cure because it is hard for the medicines to reach the inside of the nodule or cavity. The usual length of treatment lasts for at least 15 to 18 months. In other words, a MAC patient should keep taking the medications for the prescribed length of time in order for the germs to be eliminated. If "super-bugs" (drug resistant germs) develop, then cultures would be taken and medications adjusted for efficacy and susceptibility of the 'bugs' to other antibiotic treatments. Current recommendations are to take the oral medicines until the sputum cultures do not grow the MAC for 12 months based on monthly sputum tests. (taken from http://www.maclungdisease.org/index.php?option=com_content&task=view&id=32%3Ciid=55)
 
L

Ldude916

New member
MAC is mycobacterium avium complex - it's a NON-TB germ that is not contageous, but is found in our environment. It can be difficult to detect in sputum. Your CF center would collect morning samples of your sputum until they get I think 2 TBLSP? (or more) and send it to a lab, which takes 6 weeks to get FULL results. Treatment for MAC is usually a very long course of antiboitics. I had 18 months of pills, but other people on here I see had extremely long IV treatments. Do a search on this forum for MAC and you will find TONS of questions on it.
<br />
<br />MAC disease is very difficult to cure because it is hard for the medicines to reach the inside of the nodule or cavity. The usual length of treatment lasts for at least 15 to 18 months. In other words, a MAC patient should keep taking the medications for the prescribed length of time in order for the germs to be eliminated. If "super-bugs" (drug resistant germs) develop, then cultures would be taken and medications adjusted for efficacy and susceptibility of the 'bugs' to other antibiotic treatments. Current recommendations are to take the oral medicines until the sputum cultures do not grow the MAC for 12 months based on monthly sputum tests. (taken from http://www.maclungdisease.org/index.php?option=com_content&task=view&id=32%3Ciid=55)
 
J

jessykt

Guest
Sounds like you really need to look into the fever. I also agree with the person who suggested testing your oxygen levels while you are exercising.

It is very difficult not being able to do what we once did. I know exercise is very important to you, but if you can find something you enjoy very much for those times when you CAN'T might make you feel better. Can't cook? Order in, if you can afford it. Can't run? Take walks with your husband that gives you some exercise but also gives you one-on-one time with your husband. Can't have crazy sex? Find something that makes him do all the work and keeps you from getting out of breath. Can't volunteer on a Habitat House? Stuff envelopes for a non-profit.

I know this all is very difficult...keep your chin up. I dropped down to fev1 32% but came back up into the 50s. Honestly, I think being happy and laughing at something EVERY DAY brought me back to life. Now if only I could get off my rear end and start exercising!!
 
J

jessykt

Guest
Sounds like you really need to look into the fever. I also agree with the person who suggested testing your oxygen levels while you are exercising.

It is very difficult not being able to do what we once did. I know exercise is very important to you, but if you can find something you enjoy very much for those times when you CAN'T might make you feel better. Can't cook? Order in, if you can afford it. Can't run? Take walks with your husband that gives you some exercise but also gives you one-on-one time with your husband. Can't have crazy sex? Find something that makes him do all the work and keeps you from getting out of breath. Can't volunteer on a Habitat House? Stuff envelopes for a non-profit.

I know this all is very difficult...keep your chin up. I dropped down to fev1 32% but came back up into the 50s. Honestly, I think being happy and laughing at something EVERY DAY brought me back to life. Now if only I could get off my rear end and start exercising!!
 
J

jessykt

Guest
Sounds like you really need to look into the fever. I also agree with the person who suggested testing your oxygen levels while you are exercising.
<br />
<br />It is very difficult not being able to do what we once did. I know exercise is very important to you, but if you can find something you enjoy very much for those times when you CAN'T might make you feel better. Can't cook? Order in, if you can afford it. Can't run? Take walks with your husband that gives you some exercise but also gives you one-on-one time with your husband. Can't have crazy sex? Find something that makes him do all the work and keeps you from getting out of breath. Can't volunteer on a Habitat House? Stuff envelopes for a non-profit.
<br />
<br />I know this all is very difficult...keep your chin up. I dropped down to fev1 32% but came back up into the 50s. Honestly, I think being happy and laughing at something EVERY DAY brought me back to life. Now if only I could get off my rear end and start exercising!!
 
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