Therapies and Motivation

___Hannah20___

New member
Hi. My question is..how do you find the motivation or strength to take care of yourself? In all honesty it's been days since I've done any amount of therapies. I've just gotten into the habit of not doing them and the thought in doing them just isn't very appealing to me. Please don't ask me why...because I honestly have no idea. I guess I just need someone to talk to about stuff like this. I don't know. I posted this though because I really don't feel like I can talk to my parents about this without them getting pissed off at me or really sad. I don't know exactly what I'm asking anymore...so if you could just tell me how your able to do your therapies constantly and when your supposed to..that'd be great.
 

Aboveallislove

Super Moderator
Hannah,
I'm a mom and not a CF, so I'm not in your shoes and while I know how hard it is on my end, I know it is even worse on your end. What helps me and what I pray will help DS when he is older is this: The "cure" to CF is sooooo very close. If you aren't following what is going on, I'm sure you have at least heard of kalydeco. Well, we are about 2 years out from another med that is a PILL and will help those with ddf508 and the company called Vertex just announced it has a second generation of these correctors that are even better. So right around the corner are PILLS that can make CF a totally different disease. And how that affect you depends on how health/sick your lungs are. Some with pretty clear lungs are able to cut back treatments. And even those with bad lungs feel completely "normal" if they just do treatments. Those on kalydeco are also no longer culturing bacteria they had for years. This is a whole new life and way of living. If it were me, I would focus on that to do every possible treatment until these meds are available, knowing that then I could possibly stop the treatments and have a "normal" life. If it would help to know more about these drugs and what they could mean, let me know. Also, you might want to try to get into some trials b/c that could give you a new incentive. I know for me, doing everything we can NOW to that when DS is older he won't have to do treatments, or won't need a lung transplant, or oxygen, etc., helps make hours of treatments fly by. hugs.
 

ryry11

New member
Hey Hannah. I'm 19 almost 20 and I was you last winter. I felt fine without nebs, even Pulmozyme. My vest literally had dust gathering. I made a Tumblr and saw that there were teenagers who were doing every treatment and were still sick. I felt awful and started trying to do my vest every day. At first, it seriously sucked. I HATED doing the vest and all my nebs. I had to force myself to not miss for 3 weeks to get into a habit, only at night. After that, I added morning nebs and vest and made that another habit. Now doing my treatments morning and night is as habit as brushing my teeth. Tumblr still keeps me motivated. Mi e is Cfgirlflying.tumblr.com. Get involved with the cystic fibrosis tag. There are really good people there. Feel free to message me.
 

Printer

Active member
Hannah:

There are alot of things in this life that we may not want to always do. Like stopping at the stop sign at the end of your street. You may get away with driving through it but one day you will pay a big price for running it.

CF treatments are a pain in the ass but if you don't do them, one day you will pay a big price.

Bill
 
Hannah / try mixing it up. Alternate vest & flutter & CPt & acapella. Try doing night treatments before dinner so you don't have to do much before bed. Try exercise instead of cptsometimes. But don't stop! You will getusedto it. You are still young and can form lifelong habits now, later it's harder.
 

nmw0615

New member
Hannah, I went 3, almost 4 years, without doing my vest treatments, Pulmozyne or inhaled antibiotics. I simply couldn't bring myself to do them. I'd look at my vest and I'd feel a weight sitting on my chest, and it felt like a hand was reaching in and squeezing so tight I couldn't breathe. I would maybe do one or two treatments in a row, miss one and then feel like "why should I eve bother" and I'd start ignoring them again. Part of this had to do with my depression. The other part had to do with just being sick of having CF.

I could easily tell you those years were a mistake and if I could go back in time, I would. But I'm sure you'll hear that a lot and I'm sure you know it's really not a good idea to miss treatments, since you posted this thread.

What I had to do to get myself back on track was find something tangible for motivation. It was easier for me to give myself a dollar every time I did my vest than to think, "There, I'm saving my health." I didn't really care about my health at that point, but I did care about buying books. Each time I did my vest, I got a dollar I would save to buy a book. Eventually, doing my treatments became a habit and I didn't need that physical motivation anymore.

I still look at my treatments as a day to day thing. I am supposed to do 14 treatments a week; one in the morning, one in the evening, every day. If I miss one or two treatments a week, I don't beat myself up over it. I just focus on getting the next treatment in. There are still days where I stare at my vest and it physically hurts me to just think of doing it. Those are the days where every step I take to the kitchen to get my inhalers is a challenge. Hooking myself up to the vest is a challenge. Even pushing the start button is a monumental task.

I would also suggest finding a therapist to talk to. I know they can be expensive, but if you can find one that has a specialty in dealing with people with diseases, talking to that person helps so, so much. Having someone to talk to who won't judge me, who won't get that sad, disappointed look in their eyes has made a huge difference. I can't talk to my friends, because they say they understand and that annoys me because they don't. I can't talk to my parents because I know how much those years of not doing anything hurt them. But I can talk to my therapist and she helps me find the clear path so I can make the right decisions.

Please, if you ever need to talk, I am almost always around and more than happy to be a sounding board or just to listen. It takes work and focus, but it is possible to get back on track when it comes to treatments.
 

albino15

New member
I'm so glad that I'm not the only one who has such hard times when it comes to compliance.

Hannah, we have the same name and it's nice to see that you also spell it correctly LOL.
 
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