scared for my future

[Chrissy Callaway]

Hi, I'm 19 years old and I was diagnosed with cf when I was 7. I generally don't talk about my cf but every few months or so I usually go on Google and read about other people with cf. The reason I decided to post today is because I am extremely scared for myself. I don't take my medicine. Not because I decided I don't want to or don't have the time, just because I just don't feel like it. Some days I feel like "chrissy, you have to take your meds or one day you will regret it" and I'll take them. But that only occurs about once a month. Even now I'm telling myself I need to take my meds but I know my future self will find more important things to do. I'm genuinely scared for myself because this has been going on for years. I don't think I will ever get in a routine of taking my meds and I'm goi ng to regret it. I feel helpless because I know that tomorrow I will feel differently and just get up and do other things. I don't feel sick. Anyone with any opinions would really help. Thanks

 

[ethan508]

I am sorry you are feeling scared. Do you think you might be a little depressed? Are you seeing a councilor? What is your current health like; FEV1, energy level, amount of time spent in hospitals? What are your goals for the future? Do you have any good short term goals that keep you going, like a fun trip in the next few months, educational goals, or a career plan? At times the mortality aspects of CF can weigh on us enough to make longer term thinking difficult. For me, family helps because of the long term responsibility I have to be around for to them regardless of my own feelings. Religion also helps, because it gives me goals to work towards that have more impact than just this life (however long or short this life ends up). Do you have long term goals; house, husband, career? Do you have a religion or spirituality that can help provide meaning to your life?

I don't think you are going through feelings that are completely unique, and many CF folks have struggled with compliance to the medical regime at one time or another. Are there any meds or routines that are feeling extra difficult? I know vesting wears on me a lot at times. Sometimes you just need to cut things back to a manageable level so you don't end up burned out. A few years back I decided that mornings when I was spent I'd hit snooze once and cut my morning Vest routine from 30 to 24 minutes. It wasn't a huge change but it was just enough to help me feel more in control and make the morning treatment session more tolerable.

 

[Ank]

A balance b/w work and health is need to b achieved....cfers have longer life in ur country,do take advt of that.
Take nebuliser and physio is compulsary ..or else sooner or later u will start feeling suffocated..Its necessary to take adv of all treatments to liv a better life..If u dont do advised treatment you will not able to do day to day activies..very soon..But if u comply advised treatment u will live better than you are living nw..and all your fear will vanish...
Better u will feel the less u will fear...Dnt let fear decide who u r..do whats right. 4u.

 

[Red9928]

Chrissy, I'm so sorry you are feeling this way. 19 can be a tough age, your life should be taking off and having CF is making you worried for your future. You say you don't feel sick...and I imagine that feels great, but also makes it really easy to forget that you are dealing with a chronic illness, and when you want to feel like a normal 19 year old, doing normal 19 year old things you don't want to be reminded every day that have you have CF. Not taking care of yourself has become a bad habit, and I imagine it can feel overwhelming knowing where to start. I agree with ethan508, you need to find someone you trust, counselor, pastor, friend, that you can talk with about your fears and set personal, achievable health goals (and personal goals!). Maybe, start by setting a small goal for yourself, say, I will take my meds every day for one week, but don't beat yourself up if you don't achieve it, and don't make the mistake of saying, well, I didn't do it today so I might as well stop now, I've already failed. I'm glad you've reached out to the group...hang in there...and keep posting!

 

[kenna2]

I know exactly what you're going through. I was also diagnosed at 7 and at 19 I was having the same feelings you are (i'm 30 now). That's actually when I started seeing a therapist to help me. I was tired of everything I had to do, knowing that it wasn't something that wasn't going to change and I just wanted to live a normal CF free life. My parents were constantly on my case and I just wanted to get away from it all. Trust me you're not the only one who feels or has gone through this. We all have. I think it's safe to say it's a good idea to find a therapist. It took me awhile to find one that I really liked, but I kept seeing ones to at least get me through. My suggestion to you is when you make an appointment with one, find one by asking either the office or your CF social worker or doctor if they could recommend one that deals with chronic illness. The lady I see now used to be a critical care nurse and I love her because she has seen and has worked with people like us.

On the bright side you're lucky because you're in a great time for CF patients where new meds are finally coming out. I know it sucks but keep up with your meds. You wanna make sure you're health enough to take the new ones and be recommended for them when they come out. Unfortunately, I am not able to take some due to me not taking care of myself when I should have. You deserve to be happy and healthy. I know you're scared, we all are. This is not an easy disease. Just remember, you are one of the strongest and toughest people that are out there. Everyone with CF is a true warrior. We put up with some real shitty situations but still come out stronger than before. You have a whole community of CF supporters and patients out there who want the best for you.

I finally was able to get myself into a routine with my meds and while I do them, I do something that I like. I watch movies or shows online, check facebook or twitter or pinterest. You would be surprised at how fast the time goes when you're doing your meds with something you like to do. I used to be addicted to Farmville and scheduled my meds around when my crops would be ready. (Pathetic I know but it worked). I wish you the best, and if you need any more advice or support, let us know. We have your back and want you to breathe easy

 

[Rickengelage]

Hello chrissy,

I can relate to u, its a difficult routine to keep up
It takes time and effort to do all these medicine.

I think its a good thing that u regonize your own behavior of not doing ur meds, like u said u know urself, and u see how its a problem and u should change this behavior.

Its the first step to changing it.

Doing ur meds well, and having good routine is really important.
And u could benefit from it now, by feeling better, and also it could prevent shitty problems in the future indeed.

I think the problem here is motivation, it doesnt last.
Like u say, once a month or so, u find the motivation to do it, but then its gone again and u end up not doing it.

What u need is habit, motivation is temprotary, habit is consistent and effortless.

Building a habit takes some time and some effort, it takes about 2-3 weeks.

So if u can somehow have a good routine for 2-3 weeks, it becomes a habbit, and that habbit is easy to sustain.

So it becomes almost effortless to do your meds like u should, because its a habbit, a build in routine.

Now building this habbit on your own is very, very difficult.
I suggest you talk about this with you cf team, maybe they can help you build a good routine.
By for example staying in the hospital for 2-3 weeks, to build a good medicine routine.

Or any other way, should be more options.

Other things that could help is to not beat yourself up for it if u dont do ur meds, ur also just human.
We all feel like not doing them sometimes.

And u could reward yourself with anything if u do do ur meds, in anyway you want.

Basically try to let your brain associate pleasure with doing meds.

Pleasure of feeling better, pleasure in knowing u gonna stay healthier this way.

Or pleasure of a treat, after you done your meds, like once a week or something, give urself something.

After 5 days of doing ur meds right, go do something fun on weekends, to treat urself.
It could be something very simple.
Anything u want.

I hope any one these tips might help u to do ur treatments right.

Its important for your health as u know.
Specially if u use anti biotics... Its vital u use them consistently.

Good luck!