Noncompliance - To All and SamIAm

[rotandroll]

In the Christian/Prayers thread, SamIAm brought up something I think about frequently: Noncompliance.

I think most people with any type of chronic illness goes through a noncompliant phase usually during their teen years. Unfortunately, mine started around the time I was 13 and lasted until only a few years ago. Pretty stupid on my part, I'm definitely paying for it now. But now I am taking top notch care of myself and am in better health than I ever have been.

I still to this day have aspects of me that are noncompliant to a certain degree. I guess it's somehow my way of having some sort of control over all of this. May not make sense... but I have the feeling a lot of you with CF completely understand. A lot of this disease is getting sick when you are not taking care of yourself, but also getting sick when you are taking amazing care of yourself. It's often hard for me, even today, to cope with or understand, and I think that is what launched me into self destruction as an early teen.

Worrying about your friend's noncompliant little girl is normal-- but realize that what she is doing is also normal, and that trying to force her to do her medications and treatments could only make it worst. Everytime my mother begged me to do my medications and treatments it only made me push them away further. Hopefully this little girl will come to her senses much sooner than I did, and will start taking better care of herself.

Only in the last two years have realized how hurtful it was to the people that love me that I did not take care of myself for so many years. I think what families and loved ones of people with cystic fibrosis should know, atleast the people who love me, is that I was never noncompliant because I didn't love them. I cared for all of them deeply. I was noncompliant because I hated life, I hated myself and mostly I hated the disease-- and I felt that somehow I could overcome it by not treating it.

I am interested in how other people with CF have dealt with noncompliance issues in their past, or presently. How do you cope and are you over the "hump"?

 

[lflatford]

Atleast once a day I think into my daughters future (mainly teen years) and worry! As a two year old she is incredibly strong willed and a real spit fire! She knows what she wants and when she wants it more than any child I have ever seen before. However, the next thing you know she will turn around and be the sweetest, most loving little girl ever! My husband and I both do not look forward to her teen years, I can already predict she is going to rebel (just as a normal teen would), however with CF rebelling like noncompliance can be dangerous! Does anyone have advice for the parents of Teens with CF? I know I have a while before my daughter gets to that point, but it never hurts to plan ahead. And I am sure there are things we can do now to help prevent teenage noncompliance in her future.

 

[JazzysMom]

I was very non compliance most of my life. My parents did not "push" for me to be compliant either. I had a fairly mild case so CF didnt interfere with life too much. I took my pills & once in awhile went into the hospital, but overall I thought I ruled the CF not vice versa. Periodically as an adult I did what I was suppose to & still ended up in the hospital during these times so discontinued the efforts. Why bother if I would end up in the hospital, right? In 1/2000 I got extremely sick & had to quit working. I also had an 18 month old daughter at the time, but that didnt throw me into complete compliance. I still overall was able to get away with alot. Until this year. I had complications that werent my "usual" CF issues & it scared the hell out of me & my husband. My husband doesnt rattle easy. Since March of this year I have been completely compliant which didnt work for me until after my 2nd admission and things started easing a bit. I finally had a "reasonably good" checkup this month, but I am far from my baseline. I was also in a friends wedding this month as maid of honor which required a lot of time & energy. I did waive 2 treatments over that weekend, but made up for them on the 2nd treatments of each day. I can now noticed immediately when I dont do my treatment. I dont have that "pleasure" of putting it off anymore. How bad would I have gotten if I did comply all my life? I dont know, but what I do know is I have a daughter who has learned the hard way this year that Mommy cant fool around with her health.

 

[anonymous]

I definitely miss those times when I used to skip treatments and the only repurcussions were feeling guilty or knowing i "shouldnt have." Now if I skip treatments I actually feel it, and it messes up my day because I can't function nearly as well. For example, I am going to a party tonight and know if I want to have a good time and feel good i should do some stuff before hand. 4 or 5 years ago I wwent weeks and weeks without doing a treatment and didnt feel any different (only in the longrun)

caitlin

 

[anonymous]

Hey Melissa... thanks for your honesty in your post. I feel like most people with CF deal with this issue... are people afraid to confront this within themselves? I don't know. For some reason I thought this would be a really well recieved thread.

Caitlin... same to you.

-rotandroll.

 

[JennifersHope]

This is a good topic for me. sometimes it is so hard for me to be compliant, esp when I feel good. When I feel bad, yes, I see the benefits of doing all this stuff...but when I am well, I can skip my treatments and not feel any side effects, at least not right away.

I didn't do treatments at all growing up because I didn't know I had CF, and yet still my doctors recently told me my lungs are in great shape..in fact my CF doctor told me I have the mildest form of lung disease that he ever saw.for someone with CF and I never did treatments before..a few years ago. now they say, doing your treatments is going to keep me healthy.... but that makes no sense to me if my lungs are in great shape and I didn't do treatments...but I guess doing them will keep me that way... I like reading about other ppl who have trouble doing their treatments because it makes me feel like I am not alone.....

I think I am venting because I had a 20 hour day today.... and here I sit wanting to crawl into bed and instead I am plugged into a machine.... I do know that doing my breathing treatments helps and in reality I don't want to look back and wish I took better care of myself... and the biggest truth is, I think, not doing my treatments is a slap in the face to other CFers who work so hard at taking good care of themselves....who don't have as good as lung function as me.. the least I can do is take care of myself..

I might not be making sense but I am so tired...

 

[Lilith]

I'm still kinda in the noncompliance stage. I mostly do my treatments when I'm ill, and sometimes forget that my lazy butt needs to get up and do them even if I'm healthy. I think all those missed treatments are starting to catch up with me now, though. I'm getting sick more often. Bah! I mean, it's not hard to do them, but sometimes, especially in the morning, I just don't feel like messing with needles (I do Colistin, which has to be mixed) or it's just as simple as I have something else on my mind that I have to do and it completely takes over. Stupid, I know. I sometimes have the same problem as JennifersHope...it'll be really late at night, and I just want to go to bed so I don't even bother hooking up. Luckily, though, I think this last IV treatment that I'm on now has kinda kicked me into gear. My 'bugs' have started to mutate into something else...not good, and I DON'T want to end up in the hospital. Another thing I have on my side is the fact that my familiy is putting in a pool. I love to swim, so hopefully once it's in the ground I'll be able to get a lot more exercise.

I think the whole thing has to do with dicipline (I probably spelled that wrong, but oh well...). You kinda have to train yourself to get in the routine, which I still haven't done yet...and I'm starting to feel kinda stupid for that now.