sometimes you just need some rest

[kmhbeauty]

I find it very difficult to have people understand me when they dont have cf and do not know much about it. I try to live a normal life and not let anything affect me too much but what most do not understand with this disease is that sometimes you just need to rest and sleep. My boyfriend is very proactive and has a very busy life. I think he has some problems because he can never just relax, always has to be doing something. We are in the process of moving and I got my really bad joint pain for three days. I had to be in bed and not help at all. I try to make him understand, I just cant help, and he tries to accept it but I can tell he fully does not. His parents are the same where they have a lot of family functions where everyone is expected to attend. Sometime I just can not do it! I just want to rest! I think they look at me like im making excuses. They dont know too much about my diease because they dont ask. Just frustrated because I want to live a normal life but as I get older I am seeing that I really need to focus on sleep and resting when Im feeling under the weather. Sorry for the venting......any advice to help people who do not know much about the disease understand and not see the disease as notjust anexcuse to get out of things?

 

[kmhbeauty]

I find it very difficult to have people understand me when they dont have cf and do not know much about it. I try to live a normal life and not let anything affect me too much but what most do not understand with this disease is that sometimes you just need to rest and sleep. My boyfriend is very proactive and has a very busy life. I think he has some problems because he can never just relax, always has to be doing something. We are in the process of moving and I got my really bad joint pain for three days. I had to be in bed and not help at all. I try to make him understand, I just cant help, and he tries to accept it but I can tell he fully does not. His parents are the same where they have a lot of family functions where everyone is expected to attend. Sometime I just can not do it! I just want to rest! I think they look at me like im making excuses. They dont know too much about my diease because they dont ask. Just frustrated because I want to live a normal life but as I get older I am seeing that I really need to focus on sleep and resting when Im feeling under the weather. Sorry for the venting......any advice to help people who do not know much about the disease understand and not see the disease as notjust anexcuse to get out of things?

 

[jessykt]

I think most of us can understand being tired! You're body is fighting ALL the time, and that takes a lot of energy!

I'm the type of person that if this were occurring, I would actually call a family meeting and face the issue head on. That may not be your thing, but if you do it, I'm sure you can find some useful podcasts on the foundation's website and then back them up with your personal experience. Let them know lots of rest is what it takes for you to function when you ARE able to do things.

I've started backing off on the go-go-go at family functions (as there are plenty of people to do the work) and I do voice that while I do feel guilty about it, I just am not able to go like I used to. We are getting ready to move and I already told my husband to please get some friends to help because I know I won't be able to move stuff. He said that's fine, I can be packing and unpacking and not have to carry stuff. That's the kind of give and take you two will have to learn.

 

[jessykt]

I think most of us can understand being tired! You're body is fighting ALL the time, and that takes a lot of energy!

I'm the type of person that if this were occurring, I would actually call a family meeting and face the issue head on. That may not be your thing, but if you do it, I'm sure you can find some useful podcasts on the foundation's website and then back them up with your personal experience. Let them know lots of rest is what it takes for you to function when you ARE able to do things.

I've started backing off on the go-go-go at family functions (as there are plenty of people to do the work) and I do voice that while I do feel guilty about it, I just am not able to go like I used to. We are getting ready to move and I already told my husband to please get some friends to help because I know I won't be able to move stuff. He said that's fine, I can be packing and unpacking and not have to carry stuff. That's the kind of give and take you two will have to learn.

 

[mamaScarlett]

I have officially stopped worrying whether or not people understand. I've been around a while now...been healthy, been sick. I really don't care whether or not people think I'm lazy, think I do too much, whatever. As long as me and DH are on the same page and he's in tune with my needs then I'm fine. I know if I'm being lazy, and I know if I'm overdoing it. Lately I've been out of tune with my body and overdoing it. (I rarely have a lazy problem in life ever...having 2 kids laziness is not an option)

 

[mamaScarlett]

I have officially stopped worrying whether or not people understand. I've been around a while now...been healthy, been sick. I really don't care whether or not people think I'm lazy, think I do too much, whatever. As long as me and DH are on the same page and he's in tune with my needs then I'm fine. I know if I'm being lazy, and I know if I'm overdoing it. Lately I've been out of tune with my body and overdoing it. (I rarely have a lazy problem in life ever...having 2 kids laziness is not an option)

 

[kmhbeauty]

Thank you for the advice! Im glad your feeling better! Rest is really essential! Yes I agree it is just hard when people do not understand. Ilook like a healthy person who coughs a lot so I guess most will not understand that my body really is fighting a battle. My boyfriends mom even told her son "She coughs a lot, maybe if she wore more jackets, she would stop coughing" He said "mom she has a lung disease, she coughs a lot no matter what" I guess its just an example that some people just do not understand us. If I had breast cancer, I think things would be different. I think more people would understand. I hope some day CF is as well known as breast cancer and the same amount of people fight for a cure for our disease too espically since it affects the youth. When kids struggle, people should take notice! Sorry more venting......but I need to get it out!

 

[kmhbeauty]

Thank you for the advice! Im glad your feeling better! Rest is really essential! Yes I agree it is just hard when people do not understand. Ilook like a healthy person who coughs a lot so I guess most will not understand that my body really is fighting a battle. My boyfriends mom even told her son "She coughs a lot, maybe if she wore more jackets, she would stop coughing" He said "mom she has a lung disease, she coughs a lot no matter what" I guess its just an example that some people just do not understand us. If I had breast cancer, I think things would be different. I think more people would understand. I hope some day CF is as well known as breast cancer and the same amount of people fight for a cure for our disease too espically since it affects the youth. When kids struggle, people should take notice! Sorry more venting......but I need to get it out!

 

[BikerEd]

Vent on! My favorite is when I cough is some azz says "smoke another one"I have a speech that talks about them being a medical professional with extensive knowledge with the respiratory system ending with maybe they are just an azzj@&l that should keep their friggen comments to themselves.

 

[BikerEd]

Vent on! My favorite is when I cough is some azz says "smoke another one"I have a speech that talks about them being a medical professional with extensive knowledge with the respiratory system ending with maybe they are just an azzj@&l that should keep their friggen comments to themselves.

 

[1woodswoman]

I've learned the hard way that I have to listen to my body! When it says "Rest" or "Take it Eásy", & I don't listen, I suffer the consequences. It's been a hard lesson fo a former 'workaholic'. It's very frustratin, now when I'm trying to get ready to go on a long RV trip to S. AZ for some nice dry air to breath, & I'm short on the energy & endurance to get the things done for getting outa here. Lots of friends have helped me get ready, but there's only so much I can ask of them. Other friends just don't get what it's like to have multiple chronic ilnesses & how it wears me out, no matter how much I explain it, even when they've seen me when I'm sick. I just take their friendship on the face value they have to offer. I'm just feeling really bummed that I cann't get outa here w/the rainy season started & I tend to get a lot sicker, my body is just not cooperating, even tho I've been trying to pace myself & listen to it.

 

[1woodswoman]

I've learned the hard way that I have to listen to my body! When it says "Rest" or "Take it Eásy", & I don't listen, I suffer the consequences. It's been a hard lesson fo a former 'workaholic'. It's very frustratin, now when I'm trying to get ready to go on a long RV trip to S. AZ for some nice dry air to breath, & I'm short on the energy & endurance to get the things done for getting outa here. Lots of friends have helped me get ready, but there's only so much I can ask of them. Other friends just don't get what it's like to have multiple chronic ilnesses & how it wears me out, no matter how much I explain it, even when they've seen me when I'm sick. I just take their friendship on the face value they have to offer. I'm just feeling really bummed that I cann't get outa here w/the rainy season started & I tend to get a lot sicker, my body is just not cooperating, even tho I've been trying to pace myself & listen to it.

 

[kmhbeauty]

That is true biker, people need to keep their comments to themselves! I can not believe someone said that to you! I would of replied " I have a lung disease, jerk!!" lol and I feel the same right now too. Been a little under the weather for awhile. For the most part, I feel like I can control my disease, but lately it has been a little hard. Maybe its just winter, but I live in southern cali.....not too bad of a winter lol.

 

[kmhbeauty]

That is true biker, people need to keep their comments to themselves! I can not believe someone said that to you! I would of replied " I have a lung disease, jerk!!" lol and I feel the same right now too. Been a little under the weather for awhile. For the most part, I feel like I can control my disease, but lately it has been a little hard. Maybe its just winter, but I live in southern cali.....not too bad of a winter lol.