How do you feel on a daily basis?

K

krisgabes

New member
Hi everyone,

I thought I'd like to hear from some of you because maybe you could provide some insight. It has been over 2 months since I have felt well. I feel like the best I feel is in the morning and that is only a functional level of about 85%. Given, I have not had the best few months due to finding out I'll need a liver transplant somewhere between the next 5 years, losing my job due to absences (so illegal), and my job being absolutely exhausting because of budgetary cutbacks upping our case loads. I am a social worker and I do home visits with the elderly. The county is doing cut backs to some of their programs so we have been ordered to physically visit EVERY client on the program. I have a 96 person case load and I've had to see over 65 clients in a few weeks.

I'm exhausted but I just can't function past 85% each day. I start there and it gradually dwindles down. Any insight? Similar experiences?
 
K

krisgabes

New member
Hi everyone,

I thought I'd like to hear from some of you because maybe you could provide some insight. It has been over 2 months since I have felt well. I feel like the best I feel is in the morning and that is only a functional level of about 85%. Given, I have not had the best few months due to finding out I'll need a liver transplant somewhere between the next 5 years, losing my job due to absences (so illegal), and my job being absolutely exhausting because of budgetary cutbacks upping our case loads. I am a social worker and I do home visits with the elderly. The county is doing cut backs to some of their programs so we have been ordered to physically visit EVERY client on the program. I have a 96 person case load and I've had to see over 65 clients in a few weeks.

I'm exhausted but I just can't function past 85% each day. I start there and it gradually dwindles down. Any insight? Similar experiences?
 
K

krisgabes

New member
Hi everyone,
<br />
<br />I thought I'd like to hear from some of you because maybe you could provide some insight. It has been over 2 months since I have felt well. I feel like the best I feel is in the morning and that is only a functional level of about 85%. Given, I have not had the best few months due to finding out I'll need a liver transplant somewhere between the next 5 years, losing my job due to absences (so illegal), and my job being absolutely exhausting because of budgetary cutbacks upping our case loads. I am a social worker and I do home visits with the elderly. The county is doing cut backs to some of their programs so we have been ordered to physically visit EVERY client on the program. I have a 96 person case load and I've had to see over 65 clients in a few weeks.
<br />
<br />I'm exhausted but I just can't function past 85% each day. I start there and it gradually dwindles down. Any insight? Similar experiences?
 
B

BlueBeam

New member
hi Kristen

It's hard to tell how i'm really feeling day to day. Even on my good days i still have to cough like a maniac after waking up for at least 20-30 minutes then manage to do my treatments and all 'that' . I try to get the most out of my system since I have to go work in an office and I don't want to get it all out over there...

it's so hard for me to get if i'm feeling well or not. If i get an extra infection, i just ignore it and go on, it's not like it changes much.

lately i've had troubles making it to the end of the day without having to go at it again, and it's driven me to awkward situations, the worst being if there are people at my place on a friday night, and i just have to expectorate the bad stuff but can't because of all the people around me. it's horrid... deep down i know that's why i don't have a girl friend either. What's a good day (health wise) for a CF'er anyway?

heh, i use this place to get rid of all my negative thoughts, so consider i'm always a bit biased.
 
B

BlueBeam

New member
hi Kristen

It's hard to tell how i'm really feeling day to day. Even on my good days i still have to cough like a maniac after waking up for at least 20-30 minutes then manage to do my treatments and all 'that' . I try to get the most out of my system since I have to go work in an office and I don't want to get it all out over there...

it's so hard for me to get if i'm feeling well or not. If i get an extra infection, i just ignore it and go on, it's not like it changes much.

lately i've had troubles making it to the end of the day without having to go at it again, and it's driven me to awkward situations, the worst being if there are people at my place on a friday night, and i just have to expectorate the bad stuff but can't because of all the people around me. it's horrid... deep down i know that's why i don't have a girl friend either. What's a good day (health wise) for a CF'er anyway?

heh, i use this place to get rid of all my negative thoughts, so consider i'm always a bit biased.
 
B

BlueBeam

New member
hi Kristen
<br />
<br />It's hard to tell how i'm really feeling day to day. Even on my good days i still have to cough like a maniac after waking up for at least 20-30 minutes then manage to do my treatments and all 'that' . I try to get the most out of my system since I have to go work in an office and I don't want to get it all out over there...
<br />
<br />it's so hard for me to get if i'm feeling well or not. If i get an extra infection, i just ignore it and go on, it's not like it changes much.
<br />
<br />lately i've had troubles making it to the end of the day without having to go at it again, and it's driven me to awkward situations, the worst being if there are people at my place on a friday night, and i just have to expectorate the bad stuff but can't because of all the people around me. it's horrid... deep down i know that's why i don't have a girl friend either. What's a good day (health wise) for a CF'er anyway?
<br />
<br />heh, i use this place to get rid of all my negative thoughts, so consider i'm always a bit biased.
 
E

ej0820

New member
Kristen,

I must say I know EXACTLY how you feel. I've been on IVs for an infection with mycobacterium abscessus for the last 6 months and clearly, the abx aren't working. I have fevers on a daily basis, I get SOB very easily and could nap 7 hours a day. I'm still working part time and going to school and I'm just drained. I work as a cashier so my job isn't that hard. Add on a fever while having to tend to other people, though, and I'm beat. Then I go to school. School is just as exhausting...just going from my car to the classroom takes a lot out of me, and then I need to pay attention to someone else talking, haha. I wake up everyday with the intention of giving 100% and end the day with probably only giving about 60-70%. I know how you feel when you say that percentage of your focus and energy dwindles down. I know it sucks too, especially when you're our age (I'll be 26 this year, too). I get envious seeing people my age go to work and school in one day with no problems. I even have friends who do that and come home to be moms. I couldn't even fathom that, that gets me out of breath just thinking about it, lol!

I'm sorry I don't have any advice to give you on how to get better and have better, healthier days. I, myself, would like that answer. Just know that you are far from alone!
 
E

ej0820

New member
Kristen,

I must say I know EXACTLY how you feel. I've been on IVs for an infection with mycobacterium abscessus for the last 6 months and clearly, the abx aren't working. I have fevers on a daily basis, I get SOB very easily and could nap 7 hours a day. I'm still working part time and going to school and I'm just drained. I work as a cashier so my job isn't that hard. Add on a fever while having to tend to other people, though, and I'm beat. Then I go to school. School is just as exhausting...just going from my car to the classroom takes a lot out of me, and then I need to pay attention to someone else talking, haha. I wake up everyday with the intention of giving 100% and end the day with probably only giving about 60-70%. I know how you feel when you say that percentage of your focus and energy dwindles down. I know it sucks too, especially when you're our age (I'll be 26 this year, too). I get envious seeing people my age go to work and school in one day with no problems. I even have friends who do that and come home to be moms. I couldn't even fathom that, that gets me out of breath just thinking about it, lol!

I'm sorry I don't have any advice to give you on how to get better and have better, healthier days. I, myself, would like that answer. Just know that you are far from alone!
 
E

ej0820

New member
Kristen,
<br />
<br />I must say I know EXACTLY how you feel. I've been on IVs for an infection with mycobacterium abscessus for the last 6 months and clearly, the abx aren't working. I have fevers on a daily basis, I get SOB very easily and could nap 7 hours a day. I'm still working part time and going to school and I'm just drained. I work as a cashier so my job isn't that hard. Add on a fever while having to tend to other people, though, and I'm beat. Then I go to school. School is just as exhausting...just going from my car to the classroom takes a lot out of me, and then I need to pay attention to someone else talking, haha. I wake up everyday with the intention of giving 100% and end the day with probably only giving about 60-70%. I know how you feel when you say that percentage of your focus and energy dwindles down. I know it sucks too, especially when you're our age (I'll be 26 this year, too). I get envious seeing people my age go to work and school in one day with no problems. I even have friends who do that and come home to be moms. I couldn't even fathom that, that gets me out of breath just thinking about it, lol!
<br />
<br />I'm sorry I don't have any advice to give you on how to get better and have better, healthier days. I, myself, would like that answer. Just know that you are far from alone!
 
K

krisgabes

New member
Just knowing that other people are feeling the same way makes me feel better. It makes me feel like I'm not going crazy. Which was exactly why I posted it. It definately is a disadvantage especially at our age because everyone else seems to have so much energy and I'm dragging. Plus I just came into my first career from graduate school and I'm already being let go due to absences, so illegal.

My last day of work will be next Friday so I'm hoping some time off will help me to start feeling better.
 
K

krisgabes

New member
Just knowing that other people are feeling the same way makes me feel better. It makes me feel like I'm not going crazy. Which was exactly why I posted it. It definately is a disadvantage especially at our age because everyone else seems to have so much energy and I'm dragging. Plus I just came into my first career from graduate school and I'm already being let go due to absences, so illegal.

My last day of work will be next Friday so I'm hoping some time off will help me to start feeling better.
 
K

krisgabes

New member
Just knowing that other people are feeling the same way makes me feel better. It makes me feel like I'm not going crazy. Which was exactly why I posted it. It definately is a disadvantage especially at our age because everyone else seems to have so much energy and I'm dragging. Plus I just came into my first career from graduate school and I'm already being let go due to absences, so illegal.
<br />
<br />My last day of work will be next Friday so I'm hoping some time off will help me to start feeling better.
 
I

Iamqueenofeverything

New member
I am sure that the stress in your life plays a big factor in your life.

I havent felt well and have felt tired the last couple of months.i post my prob and have copied and pasted the response they may help..




How are your blood sugars? High glucose levels make me sooooo tired.

by Jeana (34 with CF, CFRD),
Mom of two boys Chris born 3/8/05
and Alex born 2/23/09 (by adoption and pregnancy)

I can do all things through Christ who strengthens me.
(Phillipians 4:13)




I am tired quite often, even when I'm feeling good. If I could take a nap every day, I would. I think being tired is just a normal part of CF.

by Leah 30 w/CF, DDF508,
Mom to 2 boys


04/12/2011 10:38 AM


mamaScarlett said :
For me there's 'daily' tired, 'stressed' tired, and 'sick' tired. I'm always fighting feeling tired, but I can differentiate between the normal, and when I'm actually getting sick. When I'm really sick or getting sick, no matter what I do I can't fight the feeling and I have to lay down.
But on the other days, I can usually get up and do what I have to do, as long as I give myself small breaks through the day.

-------------------------
Mommy to my precious daughter and another coming. B.Cepacia, Pseudomonas. DF508 and G551S.
Report this to a Moderator
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Giggles said:

For sure blood sugar levels can affect how tired you are. Check that out. But I think our bodies use sooooooooo much energy to fuction, to feel good, to even feel bad and all that energy being expended takes alot out of us. Just the energy that is used to breathe! So I think it is normal to feel tired somewhat. I would not say exhausted but a lil tired just might be the norm... Talk to your doc about it too. Good luck!
 
I

Iamqueenofeverything

New member
I am sure that the stress in your life plays a big factor in your life.

I havent felt well and have felt tired the last couple of months.i post my prob and have copied and pasted the response they may help..




How are your blood sugars? High glucose levels make me sooooo tired.

by Jeana (34 with CF, CFRD),
Mom of two boys Chris born 3/8/05
and Alex born 2/23/09 (by adoption and pregnancy)

I can do all things through Christ who strengthens me.
(Phillipians 4:13)




I am tired quite often, even when I'm feeling good. If I could take a nap every day, I would. I think being tired is just a normal part of CF.

by Leah 30 w/CF, DDF508,
Mom to 2 boys


04/12/2011 10:38 AM


mamaScarlett said :
For me there's 'daily' tired, 'stressed' tired, and 'sick' tired. I'm always fighting feeling tired, but I can differentiate between the normal, and when I'm actually getting sick. When I'm really sick or getting sick, no matter what I do I can't fight the feeling and I have to lay down.
But on the other days, I can usually get up and do what I have to do, as long as I give myself small breaks through the day.

-------------------------
Mommy to my precious daughter and another coming. B.Cepacia, Pseudomonas. DF508 and G551S.
Report this to a Moderator
Reply : Quote : Top : Bottom



Giggles said:

For sure blood sugar levels can affect how tired you are. Check that out. But I think our bodies use sooooooooo much energy to fuction, to feel good, to even feel bad and all that energy being expended takes alot out of us. Just the energy that is used to breathe! So I think it is normal to feel tired somewhat. I would not say exhausted but a lil tired just might be the norm... Talk to your doc about it too. Good luck!
 
I

Iamqueenofeverything

New member
I am sure that the stress in your life plays a big factor in your life.
<br />
<br />I havent felt well and have felt tired the last couple of months.i post my prob and have copied and pasted the response they may help..
<br />
<br />
<br />
<br />
<br /> How are your blood sugars? High glucose levels make me sooooo tired.
<br />
<br />by Jeana (34 with CF, CFRD),
<br />Mom of two boys Chris born 3/8/05
<br />and Alex born 2/23/09 (by adoption and pregnancy)
<br />
<br />I can do all things through Christ who strengthens me.
<br />(Phillipians 4:13)
<br />
<br />
<br />
<br />
<br /> I am tired quite often, even when I'm feeling good. If I could take a nap every day, I would. I think being tired is just a normal part of CF.
<br />
<br />by Leah 30 w/CF, DDF508,
<br />Mom to 2 boys
<br />
<br />
<br /> 04/12/2011 10:38 AM
<br />
<br />
<br />mamaScarlett said :
<br /> For me there's 'daily' tired, 'stressed' tired, and 'sick' tired. I'm always fighting feeling tired, but I can differentiate between the normal, and when I'm actually getting sick. When I'm really sick or getting sick, no matter what I do I can't fight the feeling and I have to lay down.
<br />But on the other days, I can usually get up and do what I have to do, as long as I give myself small breaks through the day.
<br />
<br />-------------------------
<br />Mommy to my precious daughter and another coming. B.Cepacia, Pseudomonas. DF508 and G551S.
<br /> Report this to a Moderator
<br />Reply : Quote : Top : Bottom
<br />
<br />
<br />
<br />Giggles said:
<br />
<br /> For sure blood sugar levels can affect how tired you are. Check that out. But I think our bodies use sooooooooo much energy to fuction, to feel good, to even feel bad and all that energy being expended takes alot out of us. Just the energy that is used to breathe! So I think it is normal to feel tired somewhat. I would not say exhausted but a lil tired just might be the norm... Talk to your doc about it too. Good luck!
 
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