I have not been doing my inhaled meds/physio

[anonymous]

Ok...first of all I'm too embarassed to sign in so I'm posting as anon. Sorry about that. I'm 25 yrs old.

I've been doing my home iv meds now for about 3 weeks...starting 4 weeks in a couple of days. I'm suppose to do my pulmozyme once a day, ventolin twice a day and tobi twice a day. It has over a month since I have done any of them (well, did ventolin twice last week cause I really NEEDED it). Have not done physio in a month either.

Why am I not doing my inhaled meds? I have NO IDEA. I have the time, as I'm off work cause of my home iv treatment. Worst thing is I still feel crappy. Of course I feel crappy - I HAVE NOT BEEN TAKING CARE OF MYSELF......So why am I doing this to myself??????WHY?

It's like I need to be treated like a 5 year old......someone needs to take me by my hand and stay with me until I'm done. But I have no one in my life to do that for me....no one to ask...."did you do your med's yet today? want help with your physio?" No one in my house even noticed that me med supply in the fridge has not moved in over a month...and it's on the top shelf!

It is driving me crazy. I have had alot on my plate the last few months. I have been very depressed and stressed, is this my "excuse"? I know there is NO excuse for what I'm doing to myself. I just can't figure out WHY I do this to myself. Maybe I don't want to live......maybe by not doing my meds I can die faster? I don't know.

Someone please pick my brain for me and give me some insight?????????

 

[thelizardqueen]

You say that you've been depressed and stressed out. Have you thought about talking to the CF counselor/social worker on your CF team? I know while I'm sick, and when I was in hospital, I was so incredibly stressed out and depressed to the point where it was affecting my relationship with my guy. I now talk to the CF counselor once a week, and have been doing so for the past two months now, and its done wonders for me. As for the whole not doing your treatments, I'm not sure what to say except that they HAVE to be done. I know sometimes I slack off on my treatments on the occasion, but its usually just a couple of missed doses of Symbicort, or the occasional missed TOBI treatment. Just think about how great you'll feel when you do them. Why not try setting reminders on your computer or cell phone?

 

[Brad]

Dear Anon

I used to go thru times like that, now I am at the point where
I Have to take ALL my Nebs to breath,

You will get there too if You don't start taking All
Your Meds.... All of them......

I think all of us go thru times where we just get sick
and tired of all the meds day in an day out,,,,

As Liz said, maybe you should speak to someone,,,
Another good point Liz, I use the alarm's on my cell to remind me too.....
But You are NORMAL, all of Us get sick and tired of this Crap
we call C f****ing F
Take it from an old timer, Your Fine,just need a little kick in the butt,,,
my e mail address is in my bking5794@cox.net if you want to
rant and rave at someone...... and I am pretty good at kicking butt too.......

 

[littlemisssilly]

can I ask a stupid question?

Don't you go into a massive bronchospasm with coughing fits if you miss a treatment ? I do. Even if I try to miss physio (deep breathing / flutter / coughing) routine, by lunchtime I go into huge coughing fits that are quite uncomfortable, not to mention embarrasing if I'm out in public! The 'stuff' just forces its way out if I like it or not! I thought everyone was like that? I couldn't miss a treatment I guess even if I tried!

 

[katyf13]

What we do (for both of us, when we need to) is put a checklist on the fridge and check off as you go every day. For example "pills" "morning chest pt" "morning nebs" "afternoon chest pt" "afternoon nebs". Checks make you feel good, open gaping spaces make you feel sheepish.

 

[JennifersHope]

I go through the same thing, especially when I am feeling well. I skip treatments, and I justify it by saying I don't really need it because my CF is so mild at this point.

The reason I skip mine is pure laziness. I don't want to strap my vest on or suck down nebs all the time.. I never miss one when I am sick, just when well. I think the only thing that works for me is just starting again.. Telling myself 'just for today' I am going to do all my treatments.

What is worse is some of the meds make me feel worse after doing them.. That really ruins the incentive for me to do them..

Hope you get on track soon.. and ME too...

Jennifer

 

[JazzysMom]

I have experienced this in the past most recently while on iv's. I would do my neb, but not my vest. It seeed like a real chore to do it all. Almost like I would explode. I reinstated the vest after iv's were done & am now back in the routine. I can not miss my nebs. I feel it & will not last a whole 24 hours without any nebs at all. Often is depression or just a simple rut. Othertimes its being overwhelmed with an exacerbation & other time its just pure laziness. What I did come to realize from experience over the years is that the iv's dont do any good long term if you arent helping the meds by doing some type of treatment.

 

[NoExcuses]

What keeps me going on my treatments is the fact that there are so many diseases where there isn't treatment. those people would kill to have just some meds to treat their disease - but they don't. we are fortunate enough to actually have meds to treat our disease - so we should take them.

there are also some people around the world who have CF who don't have access to meds. A great example of that is India. Indian children simply don't have access to meds like pulmozyme, IV tobramycin, or albuterol. Can you imagine what your CF would be like if you didn't have access to those meds? I, for one, would be dead for sure. There's just no question about it.

So for me, keeping our meds in perspective helps me keep going and taking my meds.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>

What keeps me going on my treatments is the fact that there are so many diseases where there isn't treatment. those people would kill to have just some meds to treat their disease - but they don't. we are fortunate enough to actually have meds to treat our disease - so we should take them.



there are also some people around the world who have CF who don't have access to meds. A great example of that is India. Indian children simply don't have access to meds like pulmozyme, IV tobramycin, or albuterol. Can you imagine what your CF would be like if you didn't have access to those meds? I, for one, would be dead for sure. There's just no question about it.



So for me, keeping our meds in perspective helps me keep going and taking my meds.</end quote></div>



Brutally honest, but I would be right by you if that makes you feel better!

 

[Ender]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>

What keeps me going on my treatments is the fact that there are so many diseases where there isn't treatment. those people would kill to have just some meds to treat their disease - but they don't. we are fortunate enough to actually have meds to treat our disease - so we should take them.



there are also some people around the world who have CF who don't have access to meds. A great example of that is India. Indian children simply don't have access to meds like pulmozyme, IV tobramycin, or albuterol. Can you imagine what your CF would be like if you didn't have access to those meds? I, for one, would be dead for sure. There's just no question about it.



So for me, keeping our meds in perspective helps me keep going and taking my meds.</end quote></div>

Well said, well said <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

What meds do you get IV? I just wonder, because if you do IV and inhale tobi, there could be too much of that antibiotics in your blood. Did your doc tell you to do both? If not, I would ask and maybe it was not so bad that you did not inhale tobi...

Uli,43,Germany

 

[EnergyGal]

I remember back when I was a healthy CF patients in my twenties and I would jog and workout. There were a few times (maybe two times that I can remember) when I would be late or possibly skip a physio treatment. I would then get mad at myself and drove myself to think about how I could be slowly ending my life as I might become ill if I would skip a treatment. When the ugly thought came to surface that was all I needed to think about and I became motivated and in a big way. My cf at the time depended on two therapies per day just to keep me feeling well.

when I would skip workouts, I would think about how one day I would regret this and that too helped me get motivated. I guess a part of myself was acting like a parent. My alter ego? Perhaps

Now that I am a transplant patient, I have to take my meds and I do not forget to do that. If I did, I would be one sorry lady. So if I do get upset or my body is not feeling well, I give myself a day to relax then I get going and crack the whip lol

Risa

 

[cdale613]

When I think about all the time I spend/ have spent doing meds, vest, CPT, flutter, coughing etc, it can get overwhelming. I have to tell myself that if I didn't do all this stuff a) I'd feel worse than I feel now b) I'll have to spend more time doing IV's/ in the hospital c) I won't be around to complain about it.

It doesn't sound like you need to hear the reasons about why you should do your treatment, or maybe you are looking for a little kick in the pants to motivate you - either way, it sounds like you need to take your issues with depression as seriously as you take (or should take) all the other pieces of your CF care.

If depression is what is keeping you from doing your treatments, you need to focus some of your energy on dealing with that. Talk to your CF Dr, and ask to have a social worker/ counselor assigned to you, if you don't already have one. In many clinics, these providers have become a standard part of care. At my clinic, I can call my social worker anytime I want to, and can talk about anything, directely CF related or not. If you already have a counselor, talk to them. They can help very much, but only if you use them - just like your meds.

Do not brush your stress/ depression away as an excuse and ignore it - Many people with chronic conditions develop anxiety or depression, because dealing with a disease like CF day in and day out can be very stressful and depressing. If one can deal with depression/stress, doing the daily routine will become easier. As the daily routine is stuck to, hopefully you will feel better, which should help you feel a lot less stressed/depressed.

In terms of what motivates me - I tell myself that while I might want to take a break, my CF won't.

Hope this helps.

Chris

25 w/CF

 

[Ricky123]

i dont blame you mate i get the feeling you feel you are fighting a loosing battle and the medications etc get too much for you i think you are right to a point in missing your treatments because if your 100% compliant you turn into a robot why live till your 65 or 70 i rather live till about 50 or less and actually live life forgeting about stupid treatments everyday

there are a few cases where people choose not to do any treatment and actually live a shorterned life and sometimes i wonder if this is the right thing to do
i have been 100% complaint (more or less in my 23 years ) and at times i think whats the point as it has affected me socially etc with hindsight i rather slack on some treatment and relax and actually live

 

[Ricky123]

i dont blame you mate i get the feeling you feel you are fighting a loosing battle and the medications etc get too much for you i think you are right to a point in missing your treatments because if your 100% compliant you turn into a robot why live till your 65 or 70 i rather live till about 50 or less and actually live life forgeting about stupid treatments everyday

there are a few cases where people choose not to do any treatment and actually live a shorterned life and sometimes i wonder if this is the right thing to do
i have been 100% complaint (more or less in my 23 years ) and at times i think whats the point as it has affected me socially etc with hindsight i rather slack on some treatment and relax and actually live

 

[Ricky123]

i dont blame you mate i get the feeling you feel you are fighting a loosing battle and the medications etc get too much for you i think you are right to a point in missing your treatments because if your 100% compliant you turn into a robot why live till your 65 or 70 i rather live till about 50 or less and actually live life forgeting about stupid treatments everyday

there are a few cases where people choose not to do any treatment and actually live a shorterned life and sometimes i wonder if this is the right thing to do
i have been 100% complaint (more or less in my 23 years ) and at times i think whats the point as it has affected me socially etc with hindsight i rather slack on some treatment and relax and actually live

 

[AnD]

I read somewhere that life isn't about waiting for the storm to pass- it's about learning to dance in the rain...

That's how I choose to see my treatments and my life...it may be raining, but I am going to keep looking for the joy inbetween that makes life worth living...

 

[AnD]

I read somewhere that life isn't about waiting for the storm to pass- it's about learning to dance in the rain...

That's how I choose to see my treatments and my life...it may be raining, but I am going to keep looking for the joy inbetween that makes life worth living...

 

[AnD]

I read somewhere that life isn't about waiting for the storm to pass- it's about learning to dance in the rain...

That's how I choose to see my treatments and my life...it may be raining, but I am going to keep looking for the joy inbetween that makes life worth living...

 

[lightNlife]

I think we've all been in your situation. I know I sure was. One of the things that was a wake up call for me was when CF friend of mine was dismissed from my clinic's care for his refusal to cooperate. He didn't do his treatments, he didn't eat right or take care of himself at all. The docs told him that if he wasn't going to put in the effort, then they weren't either. He was referred to a different doctor.

4 months later, he died.

I know that the treatments are overwhelming and time consuming. I used to think that so long as I was doing "okay" then I really didn't need to do much work to take care of myself. When I finally DID take care of myself, I saw how crappy my "okay" had truly been. I was truly shocked by how much better I began to feel.

CF is complicated. You know that. We all struggle with it in different ways. Even when we do our absolute best to take care of ourselves, CF sometimes does its own thing.

Why even bother at all then? Here's why: Because the burden of CF alone is tough to bear. Imagine carrying the burden of guilt of knowing you could have done better.

The fact that you were honest enough to share about your non-compliance demonstrates that part of you knows you HAVE to do the right thing before it all gets out of hand. You may be feeling like you'll be giving something up by doing all the treatments all the time. That's normal. We all have other things we'd rather be doing than sucking down meds and coughing out our guts. But think of it this way: you stand to gain far more by being compliant.

Lately I've come to see that I'm not losing time, but investing in it. Like most investments it's not a guarantee. Nontheless, I invest my time doing treatments in the hopes that it will translate into a payo of of more time to spend doing the things I enjoy--like being my husband's lover and best friend.

Best wishes to you, my anonymous friend. Take care of yourself.

-Lauren