absolutely NEED help with treatment compliance

F

falloutboygurl16

New member
Hi everyone it has been a while since i've been on here.
As some of you may or may not know i am not very good at treatment compliance. I WANT to do them regularly but i just don't.
I have tried to stay compliant with routines and schedules but i always do well for a week or so and then just drop from there.
Ever since i was little i did not do treatments very often. I am not sure that i was supposed to do them everyday 2 times a day when i was younger because i just remember going to the doctor and not exactly hearing what they said. My parents did not make me either..maybe i did not need to?? i have NO idea.
I do remember doing them when i was sick though and when i turned about 13 years old i went to UCLA for CF care and it all went downhill from there.
He did not tell me to do treatments so i did not, unless i was sick. I had never been hospitalized for CF until i was 16 and once when i was about 5 for a day or two.
Anyways i continually struggle with finding a routine to fall into every day and sticking with it and i do believe it is because i have never really had one. Of course now because of very few treatments when i was younger I am struggling with lower PFTs and i need to raise them for my own health and my future family (getting married in 6 months) and wanting to have a baby eventually (fingers crossed). My fiancee struggles with me to get my treatments done because he knows how important they are. I graduated college 4 months ago and have had a part time job up until march last year, when i quit to finish a 40 hour a week externship. I have always been a busy person with little time to do things and now i am looking for a job and at home so i have all the time in the world to do treatments i just havent..I cannot do a treatment for 2-3 hours after eating because i throw up, so i will wake up hungry and want to eat when i should do a treatment first.
I am so disappointed in myself and i need as much help as i can get with this.
If anyone can help me i would be greatly appreciative. I REALLY NEED THIS. totally desperate at this point.
 
B

briarrose

New member
This might sound silly, but it might help. Is there some way you can reward yourself with a tangible reward? Like, is there something nice you really want or a nice restaurant you really want to try but don't have an excuse to splurge on?

What if you made a list of your treatments on a calendar. Every time you do your treatments, give yourself a check or a star or whatever that day. When you finish 4 weeks of treatments in a row, you get to reward yourself with your treat. Repeat every month. (Or if this is too long, try a smaller treat every 2 weeks.) Until you complete the x number of consecutive treatments, you don't get your reward.) Ask your fiancee to keep your honest. Even better, ask your fiancee to join in with you. (S/he has to exercise every day or do something s/he doesn't like to do every day with their own calendar.) That way, you guys will motivate each other and keep each other honest.
 
L

LeChampion

New member
I was a lot like you...I didn't need treatments until I was about 16...I fought it. Then realized how bad I felt if I didn't do them...that's why I do them now, if I miss a treatment, I will feel God awful....I can't skip because I will feel horrible. Routine is good...I get up at the same time each day, do tx's then go about my day, and set time aside every evening about the same time for them. It sucks, but I plan my life around them...but that's what it takes. I'm 27 and have a 90% fev 1, I do the hospital about 2-3 times a year, but keep on plugging away, I want to be able to enjoy a drug similar to Kalydeco for Delta one day...and I know I have to do my treatments now to get the maximum benefit when that day comes. Treatments let me do the things I enjoy, horses, travel, exercise, social life etc...
 
F

falloutboygurl16

New member
thanks briarrose! that does sound like soemthing i could do although right now im broke so it might have to be different kinds of rewards like fav foods or something of that sort. definitely a good idea. :]
 
F

falloutboygurl16

New member
LeChampion thank you for relating to me. My goal is just to be able to feel good and be able to live long with my fiance and have a kid (willing) I am also in hopes of something similar to Kalydeco for delta im a DDF508 so I want to be able to get everything at full benefits to me. :]
 
R

ryry11

New member
Do not give yourself a choice. Start by only doing them at night. No matter what. Sit down and do them. Never skip. It takes about two weeks for a routine to set in. For those two weeks, do not skip. Choose a month where you will be at home, not traveling or out of the house. Once you have a routine every night, add the morning treatment. Figure out a way your schedule works and fit them in. Again, no matter what, do them. Wake up early if you have to. Do not let yourself skip and keep doing the night time treatments without fail. If you miss, start over with building the routine again. Once you have a routine that seems as normal as brushing your teeth, you can skip when you ABSOLUTELY have to (travel, exhaustion, etc) but until then, do not give yourself an option to skip. Plan your day around them. They are the most important part to keeping you healthy.
I did this last winter and now I do not miss. I used to never do vest and would miss a week of Pulmozyme. Now I don't. It's like showering or going to school. My PFTs have jumped up because of this.
 
R

running4life

New member
I had a hard time doing my treatments my entire life. Luckily, I have been very healthy until this year when I was hospitalized in March for the first time. I was telling my best friend that I don't do my treatments daily and she got pretty upset with me for not doing all I can to take care of myself. She asked me why? I gave a lot of the excuses you have too. We began to dissect the deeper reasons as to why I did not take care of myself.

1. Ask yourself why you don't do your treatments? Do you believe they don't help? Remind yourself it is maintenance and it is for your long term health.
2. Write your goals down and remind yourself of your goals. Not one of your goals can be accomplished without YOU.
3. Do you not love yourself enough to take care of yourself? You ARE worth it. You ARE valuable.
4. Read a book, pray, meditate, devote the time you are doing your treatments to yourself. Make it a treat for yourself.

Good luck. You CAN do this. You have the self-control and discipline to do it. Make a schedule and stick to it. Will you fail? Yes, but keep on!
 
D

dancer78

New member
Good for you! I also have had a hard time keeping "compliant." Still do. Coming onto the full blown cf scene late, it put a real dent in my schedule. For me getting up super early, sitting quietly with coffee, (so I get in a good mood) and THEN doing the pulmozyme, etc is the only thing that works for me. On the days I don't free lance, I get my husband out the door first, and then do the treatments. If I wait until night, I won't do it... too tired.

Sounds like you are doing really well, and have found a system/time that works for you. Isn't it great to FEEL better? You have a busy, great life planned with getting married and having kids... you want to be the best version of yourself, cause you have things to do!
Take care! :)
 
F

falloutboygurl16

New member
Thank you SO MUCH dancer78! I cannot believe how amazing i feel. I got a little bit of a flu bug for a week that set me feeling aweful but i am back to feeling well. <3 It is a struggle to make sure that i do them but i keep thinking about FUTURE and i am doing pretty well. :] you take care as well.
 
I

isabella Mendoza

New member
Excellent thread! Compliance has been a problem for both of my sons (22 and 25 w/CF). When they were little we gave them absolutely no choice. It was never optional no matter what. Then when each of them moved away they stopped. Each of them got sick and ended up losing weight, losing lung function, having generally pretty terrible consequences. Accountability is the only way! I love the suggestion that you keep track on a calendar or spread sheet or something like that. With a college paper you have a deadline, or due date, right? The day before it is due is when you do it, right? SO, with your treatments, give yourself a deadline, stop multitasking, write it down. GREAT JOB!!
 
C

chelsie882003

New member
Hello,
My name is Chelsie
I used to be the same way, i was really healthy when i was younger, wasnt hospitalized till i was like 16 and pfts were in the 60's. im 24 now and my pfts are 43%.
What i do, i get up and drink some coffee to keep my sugar steady long enough to do treatments in the morning. i just wake up and do them. i never used to even care about my health till it got even more serious, turned diabetic when i was 16 so that made my health go downhill. i do 4x a treatments a day and go to school and go to the gym everyday.its not hard to get motivated into taking treatments, you just gotta think "treatments and a better health life" or "dont do them and go downhill" you dont wanna get onto a transplant lists. No CFer does. just gotta get up and do them. im so used to doing them alot now that i dont even think about it when im hooked to my vest and nebulizers, i keep myself busy and stay on the laptop.
 
F

falloutboygurl16

New member
all of you guys have helped so much. It really is not that hard once you get into a routine of doing them. next step is to add exercise. :] I gotta get toned up for the wedding haha. :]
 
J

jwags326

New member
I had a very hard time following thru with working out and my husband made a workout schedule for me and if I followed it for 8 weeks I got a treat (a purse I have wanted for awhile) if I keep up with my workouts until May, I get a puppy! I am sticking to it, too. This will help keep me healthy because we are trying for a baby too.
 
You must log in or register to reply here.
Top