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Parents with CF

mamerth

New member
I have been feeling very overwhelmed lately keeping up with treatments, my housework and everything else. I don't work outside the home. We don't have family near us to give me a break (they live 8-12 hours away). I feel like I am busy from the time I get up till the time until I fall into bed at night. My downtime is when I do my treatments (and I am constantly multi-tasking while doing treatments). I try to make my treatments a priority. Weekends are a bit better but Monday-Friday pretty much go-go-go. My husband works long hours so he isn't home to help very much.

How do you keep with everything?? What things to you let slide??
 

mamerth

New member
I have been feeling very overwhelmed lately keeping up with treatments, my housework and everything else. I don't work outside the home. We don't have family near us to give me a break (they live 8-12 hours away). I feel like I am busy from the time I get up till the time until I fall into bed at night. My downtime is when I do my treatments (and I am constantly multi-tasking while doing treatments). I try to make my treatments a priority. Weekends are a bit better but Monday-Friday pretty much go-go-go. My husband works long hours so he isn't home to help very much.

How do you keep with everything?? What things to you let slide??
 

mamerth

New member
I have been feeling very overwhelmed lately keeping up with treatments, my housework and everything else. I don't work outside the home. We don't have family near us to give me a break (they live 8-12 hours away). I feel like I am busy from the time I get up till the time until I fall into bed at night. My downtime is when I do my treatments (and I am constantly multi-tasking while doing treatments). I try to make my treatments a priority. Weekends are a bit better but Monday-Friday pretty much go-go-go. My husband works long hours so he isn't home to help very much.
<br />
<br />How do you keep with everything?? What things to you let slide??
 
M

marcijo

Guest
It's hard! I have CF and am 36...have 2 kids ages 6 and 8. I work from home doing bookkeeping but that keeps me super busy. I do have a house cleaner which makes that end of things easier - she comes once every 2 weeks. My husband works long hours as well (usually 6:30am-4:30pm). Between treatments, my work, the kids schedule (they do irish dance, piano, and various sports) - its all I can do to keep up. Sometimes I just want a break-but keep going because I have to!

We don't have family close by to help out - and we rarely have babysitters (don't want to spend the money)....

I dread the day I have to be hospitalized - as that will really through a wrench into things.

I only have treatments at night (Except when I am on Tobi) and I am usually doing them about 10pm - sometimes I am so tired all I want to do is go to bed but I make sure I do my treatments. Somehow I am able to keep it all running-for now!
 
M

marcijo

Guest
It's hard! I have CF and am 36...have 2 kids ages 6 and 8. I work from home doing bookkeeping but that keeps me super busy. I do have a house cleaner which makes that end of things easier - she comes once every 2 weeks. My husband works long hours as well (usually 6:30am-4:30pm). Between treatments, my work, the kids schedule (they do irish dance, piano, and various sports) - its all I can do to keep up. Sometimes I just want a break-but keep going because I have to!

We don't have family close by to help out - and we rarely have babysitters (don't want to spend the money)....

I dread the day I have to be hospitalized - as that will really through a wrench into things.

I only have treatments at night (Except when I am on Tobi) and I am usually doing them about 10pm - sometimes I am so tired all I want to do is go to bed but I make sure I do my treatments. Somehow I am able to keep it all running-for now!
 
M

marcijo

Guest
It's hard! I have CF and am 36...have 2 kids ages 6 and 8. I work from home doing bookkeeping but that keeps me super busy. I do have a house cleaner which makes that end of things easier - she comes once every 2 weeks. My husband works long hours as well (usually 6:30am-4:30pm). Between treatments, my work, the kids schedule (they do irish dance, piano, and various sports) - its all I can do to keep up. Sometimes I just want a break-but keep going because I have to!
<br />
<br />We don't have family close by to help out - and we rarely have babysitters (don't want to spend the money)....
<br />
<br />I dread the day I have to be hospitalized - as that will really through a wrench into things.
<br />
<br />I only have treatments at night (Except when I am on Tobi) and I am usually doing them about 10pm - sometimes I am so tired all I want to do is go to bed but I make sure I do my treatments. Somehow I am able to keep it all running-for now!
 

Ratatosk

Administrator
Staff member
Not a parent wcf, but a parent... Have you ever considered not homeschooling and sending the kiddo to school or is that not an option in your area?
 

Ratatosk

Administrator
Staff member
Not a parent wcf, but a parent... Have you ever considered not homeschooling and sending the kiddo to school or is that not an option in your area?
 

Ratatosk

Administrator
Staff member
Not a parent wcf, but a parent... Have you ever considered not homeschooling and sending the kiddo to school or is that not an option in your area?
 

Transplantmommy

New member
I had Brady when I was already needing a transplant so it was very hard to keep up. I could hardly even hold him to feed him his bottle because I would cough so much. We actually had to "hire" a friend to come in and do the housework for me. She lives on the next street over, so she would come check on me every day and do whatever I couldn't do.

When I was in the hospital, we had a babysitter so that Nate could still go to work. Eventually (about a month and a half before my transplant) my Mom moved in with me to help take care of Brady and do the chores. She stayed until about 6 months after my transplant. She had gotten a job, but she was still around to help out. Even after she moved out, she stayed in the area up until this past March when she bought her Mother's house. She was around to help if I needed it.

It's not easy to afford things like this, but people actually did it for us pretty cheap since they knew our situation. It really is hard to keep up with everything when you're not feeling your best. I had to do anything I could but I still needed help. If you have neighbors or friends that would be willing to help out, that would probably be the best way for you to go.
 

Transplantmommy

New member
I had Brady when I was already needing a transplant so it was very hard to keep up. I could hardly even hold him to feed him his bottle because I would cough so much. We actually had to "hire" a friend to come in and do the housework for me. She lives on the next street over, so she would come check on me every day and do whatever I couldn't do.

When I was in the hospital, we had a babysitter so that Nate could still go to work. Eventually (about a month and a half before my transplant) my Mom moved in with me to help take care of Brady and do the chores. She stayed until about 6 months after my transplant. She had gotten a job, but she was still around to help out. Even after she moved out, she stayed in the area up until this past March when she bought her Mother's house. She was around to help if I needed it.

It's not easy to afford things like this, but people actually did it for us pretty cheap since they knew our situation. It really is hard to keep up with everything when you're not feeling your best. I had to do anything I could but I still needed help. If you have neighbors or friends that would be willing to help out, that would probably be the best way for you to go.
 

Transplantmommy

New member
I had Brady when I was already needing a transplant so it was very hard to keep up. I could hardly even hold him to feed him his bottle because I would cough so much. We actually had to "hire" a friend to come in and do the housework for me. She lives on the next street over, so she would come check on me every day and do whatever I couldn't do.
<br />
<br />When I was in the hospital, we had a babysitter so that Nate could still go to work. Eventually (about a month and a half before my transplant) my Mom moved in with me to help take care of Brady and do the chores. She stayed until about 6 months after my transplant. She had gotten a job, but she was still around to help out. Even after she moved out, she stayed in the area up until this past March when she bought her Mother's house. She was around to help if I needed it.
<br />
<br />It's not easy to afford things like this, but people actually did it for us pretty cheap since they knew our situation. It really is hard to keep up with everything when you're not feeling your best. I had to do anything I could but I still needed help. If you have neighbors or friends that would be willing to help out, that would probably be the best way for you to go.
 

my65roses4me

New member
I am not a parent but I do have cf.
I understand the want to keep your children home and to homeschool them and I think its probably best for the child and you health wise (less sickness brought home) but I think in my own life it would be so taxing to have to school my child, take care of the house, cook meals, tend to hubby when he is home, keep a good marriage, and have time for myself for treatments etc and just time to myself.
Most healthy women cant do all of that.
Maybe you need to step back and take a hard look at your situation and make small changes before making the big decisions. Maybe hire a housekeeper once in awhile (even if its once every 4-5 weeks for the deep cleaning).
Do you cook ahead of time? You can make meals on weekends and heat them during the week. Yeah its alot to do on the weekends but it will free up some time for you during the week. There is a website for weekend cooking I will try to find it if you would like.
Also when your hubby is home, maybe take some alone time for yourself. Get out of the house. I am a stay at home wife and I know that if I am home too much and dont have any away time for myself it can all become very overwhelming. Or if he wroks till late, maybe hire a neighbor or friend to watch him for a couple of hours.
To me its all about balance. Have you ever heard what flight stewards tell the passenger's?
In case of an emergency put your oxygen mask on before your children.
Thats because you cant help them if you are not well.

I admire you and love how you are a great homemaker, mom and wife!! I love reading your blog and think you do a great job!! Just dont forget about you!!!
 

my65roses4me

New member
I am not a parent but I do have cf.
I understand the want to keep your children home and to homeschool them and I think its probably best for the child and you health wise (less sickness brought home) but I think in my own life it would be so taxing to have to school my child, take care of the house, cook meals, tend to hubby when he is home, keep a good marriage, and have time for myself for treatments etc and just time to myself.
Most healthy women cant do all of that.
Maybe you need to step back and take a hard look at your situation and make small changes before making the big decisions. Maybe hire a housekeeper once in awhile (even if its once every 4-5 weeks for the deep cleaning).
Do you cook ahead of time? You can make meals on weekends and heat them during the week. Yeah its alot to do on the weekends but it will free up some time for you during the week. There is a website for weekend cooking I will try to find it if you would like.
Also when your hubby is home, maybe take some alone time for yourself. Get out of the house. I am a stay at home wife and I know that if I am home too much and dont have any away time for myself it can all become very overwhelming. Or if he wroks till late, maybe hire a neighbor or friend to watch him for a couple of hours.
To me its all about balance. Have you ever heard what flight stewards tell the passenger's?
In case of an emergency put your oxygen mask on before your children.
Thats because you cant help them if you are not well.

I admire you and love how you are a great homemaker, mom and wife!! I love reading your blog and think you do a great job!! Just dont forget about you!!!
 

my65roses4me

New member
I am not a parent but I do have cf.
<br />I understand the want to keep your children home and to homeschool them and I think its probably best for the child and you health wise (less sickness brought home) but I think in my own life it would be so taxing to have to school my child, take care of the house, cook meals, tend to hubby when he is home, keep a good marriage, and have time for myself for treatments etc and just time to myself.
<br />Most healthy women cant do all of that.
<br />Maybe you need to step back and take a hard look at your situation and make small changes before making the big decisions. Maybe hire a housekeeper once in awhile (even if its once every 4-5 weeks for the deep cleaning).
<br />Do you cook ahead of time? You can make meals on weekends and heat them during the week. Yeah its alot to do on the weekends but it will free up some time for you during the week. There is a website for weekend cooking I will try to find it if you would like.
<br />Also when your hubby is home, maybe take some alone time for yourself. Get out of the house. I am a stay at home wife and I know that if I am home too much and dont have any away time for myself it can all become very overwhelming. Or if he wroks till late, maybe hire a neighbor or friend to watch him for a couple of hours.
<br />To me its all about balance. Have you ever heard what flight stewards tell the passenger's?
<br />In case of an emergency put your oxygen mask on before your children.
<br />Thats because you cant help them if you are not well.
<br />
<br />I admire you and love how you are a great homemaker, mom and wife!! I love reading your blog and think you do a great job!! Just dont forget about you!!!
 

mamaScarlett

Active member
My hubby and I just had this talk this morning actually. From time to time we have to reevaluate how much I can do, what help I need, etc.
I come from this huge family with tons of moms in it. And I see the moms that are the most stressed either tend to be very disorganized with too much 'stuff', or they over-extend themselves with too many outings, activities, etc.
We all have that from time to time, but for myself if I let it get out of hand I just lose control of my life and mostly, my health. I have to stick to a schedule. Saying no to non-essential activities is big for me.
Lately the biggest help has been help with the house. I've had cleaners come in every 2-3 weeks. Having a 3 yr old, and being pregnant right now has been exhaustingggg! (there should be a new word for tired) So help with the house is huge. It costs us about $150 per cleaning-a team of 4 for 3 hours that does everything. However a cheaper alternative would be to hire a high school age girl thats responsible, or someone that you know that needs the extra cash. If you could work something down-like 1 hour of cleaning once a week for $40-50.
We have always had a special fund aside for times like this when I need extra help healthwise, till I get back on my feet.
The other thing I'm doing is only cooking 3-4 times a week, typically Mon, Wed, Fri and maybe once on the weekend or takeout. I make a big batch of something really yummy, double that I'd need. And we eat it for leftovers the next day. I spend less on groceries this way, plus its less cooking time, less dishes and kitchen cleaning. Of course I don't always want to eat leftovers but its a big help so you just deal with it.
Using paper plates and cups during the day is a huge help too believe it or not. We go through so many cups in one day. Much less dish time for me. The cheap ones are fine.
One thing I never let slide is my pt time. 9am-while daughter watches Tv for 1 hr. Then 4 pm and again she gets her 1 hr of tv. It works for us. When I'm really down, I let the house slide and we do takeout, or cereal, or pb&j. <img src="i/expressions/face-icon-small-smile.gif" border="0">
If hubby works long hours-(which mine does also)-remind him that you also work long hours <img src="i/expressions/face-icon-small-smile.gif" border="0">, and either every or every other Sat afternoon you get 2 hours to go out for alone time to recharge.
Get your nails done, or if you want to cut back just go sit in a Starbucks and read for 2 hours. It works miracles to have grownup time to recharge. Also, if he gets home from work at 8 say, he'll have his shower and then do dd's bath. Its only 20 mins, but its a huge help and special time for them.

I have alot of family very close by. The little things my mom and mil help with really add up, but I mostly only rely on them if I'm very sick. So I'd say if you try some suggestions and stick to schedule, and you still feel like its all too much you might have to think about a big life change. A move, or a back to school decision.

I try hard to remember that all moms feel this way. Non-cf moms with 'healthy' kids are all run down and tired. My older sister, a mom of 5 once said "you're going to be tired all the time for 20 years. thats the way it is, and you can sleep when they're grown up" Of course we don't have the luxury of running ourselves ragged bc we have special circumstances, but the principle of that statement is true.

Hugs. I know its hard. Give yourself some slack. Perfection is over-rated. <img src="i/expressions/heart.gif" border="0">
 

mamaScarlett

Active member
My hubby and I just had this talk this morning actually. From time to time we have to reevaluate how much I can do, what help I need, etc.
I come from this huge family with tons of moms in it. And I see the moms that are the most stressed either tend to be very disorganized with too much 'stuff', or they over-extend themselves with too many outings, activities, etc.
We all have that from time to time, but for myself if I let it get out of hand I just lose control of my life and mostly, my health. I have to stick to a schedule. Saying no to non-essential activities is big for me.
Lately the biggest help has been help with the house. I've had cleaners come in every 2-3 weeks. Having a 3 yr old, and being pregnant right now has been exhaustingggg! (there should be a new word for tired) So help with the house is huge. It costs us about $150 per cleaning-a team of 4 for 3 hours that does everything. However a cheaper alternative would be to hire a high school age girl thats responsible, or someone that you know that needs the extra cash. If you could work something down-like 1 hour of cleaning once a week for $40-50.
We have always had a special fund aside for times like this when I need extra help healthwise, till I get back on my feet.
The other thing I'm doing is only cooking 3-4 times a week, typically Mon, Wed, Fri and maybe once on the weekend or takeout. I make a big batch of something really yummy, double that I'd need. And we eat it for leftovers the next day. I spend less on groceries this way, plus its less cooking time, less dishes and kitchen cleaning. Of course I don't always want to eat leftovers but its a big help so you just deal with it.
Using paper plates and cups during the day is a huge help too believe it or not. We go through so many cups in one day. Much less dish time for me. The cheap ones are fine.
One thing I never let slide is my pt time. 9am-while daughter watches Tv for 1 hr. Then 4 pm and again she gets her 1 hr of tv. It works for us. When I'm really down, I let the house slide and we do takeout, or cereal, or pb&j. <img src="i/expressions/face-icon-small-smile.gif" border="0">
If hubby works long hours-(which mine does also)-remind him that you also work long hours <img src="i/expressions/face-icon-small-smile.gif" border="0">, and either every or every other Sat afternoon you get 2 hours to go out for alone time to recharge.
Get your nails done, or if you want to cut back just go sit in a Starbucks and read for 2 hours. It works miracles to have grownup time to recharge. Also, if he gets home from work at 8 say, he'll have his shower and then do dd's bath. Its only 20 mins, but its a huge help and special time for them.

I have alot of family very close by. The little things my mom and mil help with really add up, but I mostly only rely on them if I'm very sick. So I'd say if you try some suggestions and stick to schedule, and you still feel like its all too much you might have to think about a big life change. A move, or a back to school decision.

I try hard to remember that all moms feel this way. Non-cf moms with 'healthy' kids are all run down and tired. My older sister, a mom of 5 once said "you're going to be tired all the time for 20 years. thats the way it is, and you can sleep when they're grown up" Of course we don't have the luxury of running ourselves ragged bc we have special circumstances, but the principle of that statement is true.

Hugs. I know its hard. Give yourself some slack. Perfection is over-rated. <img src="i/expressions/heart.gif" border="0">
 
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