Wednesday, June 15, 2011

That Little Piece of Regret

Earlier on today while walking towards the fridge to get my second dose of Cayston I yelled out to Mandi “well I guess I might as well do another treatment!”. Then, for some strange reason, I thought to myself, "Man, will I be doing treatments for 2 to 3 hours a day for the rest of my life?". What came next was actually kind of strange and to be honest, kind of surprised me. Immediately after the statement I had just internally made, I thought to myself, “I sure wish I would have started doing more treatments earlier on in life”.

So that brings me to my question for those of you reading this - do you wish you would have been on the compliance bandwagon earlier? Or let me put it another way for those of you who have always done treatments - Do you ever look back and wish you hadn't done so many? I would of course hypothesize that there is not a single CFer out there who regrets being compliant, but I recognize that this hypothesis is really just a shot in the dark. Just as I tell people that you'll never regret a work out, I would like to think I could tell people that you'll never regret a treatment. I wish I could say that I was one who never missed a treatment, but I can't and therefore that little piece of regret is still with me.

The key in this however is that I'm not filled with the kind of regret that weighs me down. Do I regret not doing more treatments when I was younger? Absolutely! Do I allow that regret to stunt my progress going forward? No way! I completely realize that there is no turning back the clock and getting back to a point where I can somehow re-do my treatments. I can however from this point on hold that small piece of regret in my mind for the sole purpose of motivating me to make better decisions regarding my health going forward. Fortunately for me, when I did step up my treatment regimen, I was able to “turn back the clock” so to speak. I was able to return my lung function to a place that it hadn't been since 2003. I was able to do things physically that I hadn't been able to do with such energy for quite some time. There is of course a part of me that says, “imagine if you would have had this commitment when you moved out of your parents house” or “imagine if you was spent less time 'doing the college thing' and more time taking care of yourself”. Would things really be different? Who knows, but I guarantee it wouldn't have been detrimental to my health to be more compliant in my past.

So what's the point of his blog anyway? There really is no point, I just thought I would share some of the thoughts I was having today.

Maybe you're at that point right now where you have some decisions to make regarding your health. Maybe you're about to ship off to college and for the first time in your life your health is completely in your hands. Maybe instead of getting out of the house right now to hang with your friends you can do treatment and catch up with them 30 minutes later. Who knows what this blog will do, but if it can help some fibro or cyster out there to avoid that little piece of regret, it would be completely worth writing.

Comments (19)

Loading... Logging you in...
  • Logged in as
I definitely wish I had done more treatments when I was younger. I had a significant drop in lung function a couple years ago and still haven't recovered. The "what-ifs" tend to build up sometimes.

Thanks for the post. It's good to know I'm not the only one with those thoughts.
1 reply · active less than 1 minute ago
The great part is, from this day forward, you can try your best to get in each and every treatment :)
I wouldn't say I regret it but I definitely wish I had done treatments as a child because then maybe I wouldn't be sitting here right now with 55% lung function and wondering when the next time I'll go to the hospital will be. I still am not 100% compliant and struggle sometimes to find the motivation within myself to do my treatments. You know when you have those days and think "wow, nothing's going right.. what's the point?" and unfortunately you skip a treatment or don't do anything about your health, which just makes things worse. I still have those days, but I'm trying to improve my health with compliance and exercise. Two things I've always dreaded. The skype video chats with cfers are really helpful, because they're doing treatments which is definitely a great motivator. It's nice to know that you're not the only one doing your vest when you put it on or inhaling a neb. In the long run, I'd say it's much better to start early but it's okay if you miss a day every once in a while to do something fun. We can't always be completely consumed in medicine. It's nice to live a day without worrying about it or having to worry about cf.
2 replies · active 720 weeks ago
If you have 55% lung function still, I would say something is going right! Think of all the other worse stages you could be at. Take that 55% as a gift and use it as motivation to do everything in your power to get to 60%.
I love what you said about Skype chats! that's one of my favorite things to do during my treatments. People always want to call and talk on the phone (which is hard with a neb in your mouth) but on skype it's very do-able and makes the treatments go much faster. :)
I am thinking of planning a party for my daughter to celebrate her first year of 100 percent treatment compliance.
2 replies · active 720 weeks ago
I'm thinking that's an awesome idea...maybe I should send a gift? :)
Love this idea!! You can make it an annual thing. Each year she is 100% compliant she gets a party, or a gift, or something! Great, great idea!!
This post could apply to more people than just those with CF. I have CP (Cerebral Palsy) and I know a lot of people with CP deal with the same feelings. We're all told to at the very least stretch once a day, but ideally twice and have PT or work out regularly. Do I wish I would've listened to people when I was younger. Sure. Then again I wouldn't be as blessed as I am if I had listened.

Now I'm on the "do as I say, not as I've done" bandwagon. Your "mistakes" have the potential to make someone else's life easier (and maybe better)
1 reply · active 720 weeks ago
Very, very true. A wise friend of mine once said, "I get a huge amount of satisfaction when others can learn from my mistakes. I like to think of it as my positive little piece that I'll leave with the world."
When I left for college, I didn't even allow myself to think that non-compliance was an option for me. If anything, I wanted to get healthier and exercise more. I recently moved back home from finishing my first year and managed to stay pretty compliant the whole time. I could probably count the treatments I missed on one hand, but it wasn't easy at all. Though staying out of the hospital all year made it totally worth it so no regrets on that part (the exercise, I could always do better on though).

Especially when it comes to TOBI months, it feels like I'm always doing a treatment. It's frustrating, but in the end, it keeps me healthy so I keep up what I'm doing.
1 reply · active less than 1 minute ago
I'd say that you nailed it Gillian! Great job on kicking so much booty your first year of college! I love that you were able to stay out of the Hole for the entire year. Imagine what could happen with a little more exercise in your routine?!?! :)
Ronnie, I have one question for you, are you God? Honestly, I have not been the best at doing ALL of my treatments the past few months but definitely within the last few weeks. Your blog post really makes me want to get back into the swing of things before it gets too bad and is irreversible! Just recently (since Sunday) have I put my butt in gear and started to do my treatments the amount of times I'm supposed to. My sister and I made a decision that if we both do the things we need to do (treatments, take meds, do sinus rinses, etc) for 2 weeks then we will both treat ourselves to a nice dinner out somewhere, just the two of us. Sort of as a "mini-celebration" for doing our stuff for 2 weeks straight, and then repeat the next 2 weeks we go without skipping or missing. This has now gotten me to do my treatments when I need to because now that I'm working I can treat us both to a nice dinner and I think that it will be a great way for my sister and I to bond before she goes off to college in August. A few months back my social worker said to me, "you just need to find something that works and go with it!" in terms of getting my treatments done, and thank goodness that I have FINALLY found something to give me the incentive!! Sorry, my post just kind of rambled..what was I saying? Oh yeah! Thank you very very much for writing this post when you did, you will never know how much this means to me! :)
1 reply · active 720 weeks ago
That's a GREAT idea Lauren (maybe I can convince my wife to do something similar?? :) ) I'm glad that you stumbled upon this post and that it may have done something positive for you. Maybe you're the one cyster I helped that I mentioned at the end of the blog? Oh, I don't even know how to answer your first question other than if I was God, we'd all be screwed. When I first read it I said to myself, "Oh great, this girl is going to rip into me". Luckily it was a very nice comment and for that I thank you.
Part 1:
Ah, the would of, should of, could of philosophy. Oh yes, I have wracked my head many a time in the past, asking myself those same questions. Reflecting back on the early days of college in which I drank too much, skipped just about every neb out there, my only exercise consisted of walking to campus or the pub, & said NO to daily pill popping. Honestly, I can say, I do not regret it, not one bit at all, why? Because those times in my life, where I was a so called wild child, enhanced who I am today, they made me look around & see the consequences. These were not necessarily occurrences revolving around me alone, but that too of peers, who were falling back, instead of moving forward, because such routines were a course leading to poor health, or prevention of progress. I did not want to digress,I wanted great things, & still do, so things had to change, & that they did.
2 replies · active less than 1 minute ago
Part 2:
So, what's my point? I think it takes some messing up, to place yourself on the right course. Without a little trial & error, how else will we learn what we need to in order to care for ourselves? Granted, experiences will not cause drastic changes for us all, & it takes a little more. Sometimes, it is setting the example, & I think it is pretty apparent, you do this, so good for you Ronnie....high fives & kudos your way.
Some people haven't had to learn by their mistakes to take better care of themselves and therefore have avoided some or any lung damage along the way. Do I wish I would have been in that crowd? Yup.
I always think if I can get through to Aleeya (she's a fellow 14 year old cyster I mentor) one thing it is do it now or you will regret it later! I have always been fairly compliant, but when I was younger I would miss many treatments for weekend trips and what not, even now I miss 1 -2 treatments a week. But I was living and doing things I loved when I was missing them! So yes I regret it, but I don't regret living my life!
1 reply · active less than 1 minute ago
I'd say that with all of the new portable equipment that we can do both!! :)

Post a new comment

Comments by