One thing about CF that still really pisses me off!

[Faust]

Ok, now I know compared to the "big picture" my complaint isn't worth a handful of dried beans. But I will share what still to this day chaps my hiney:

Me/mate/tons of other friends/whoever are all out having a grand old time. We drink (a ton), we do whatever, we drink some more, we go somewhere to eat and have a great time, we maybe all end up at say my house (if im lucky) and drink some more and just basically enjoy every possibly second with each other laughter/closeness wise...Everyone, when they are ready, goes to bed to pass out right?


Not my a*s. I'd F'in LOVE, CRAVE, and GO NUTS for the ability to just "pass out" whenever I was "done" with social/drinking fun. Where everyone else just goes to pee and then crash real hard sleep wise (and probably have MUCH better sleep than me on my best day), I have to sit down and do 3-4 aresols. And it's even worse if im a tad chunky and say need to do a vest (like if I haven't done it in like 4 days or longer, and I know it will help me sleep better), that is another 40+ minutes atleast added to the "this sucks" factor.


I know in the big picture, this gripe is very marginal to being a human being somewhere else on earth. Being a CF patient (even if you have CF real bad and closer to the end stage) in the US or Europe, is sooooooo much better than not having CF and say, being a child in Somalia, where just surviving has extremely crappy odds.

But it just annoys me to no end. I would *LOVE* to be able to, when i'm "done" with being social/havin fun/whatever, just to 100% go to sleep, and not have to deal with the BS I have now. Thank you God/Mother Nature/Mutation/Family/ for letting me live this long, under general good health, but we all can have something to complain about. Massive negative CF crap aside, I choose to complain about THIS!

 

[JazzysMom]

It does suck, Sean. There are many nights that I want to snuggle with my daughter after reading her a story at bedtime, but I CANT because if I do I will fall asleep with her & never do my p.m. treatment leaving me feel crappier in the a.m. There are times that after dinner I just want to chill & chat with my hubby. Nope not until I do my treatment. I am grateful that at this point the treatments make a world of differene so like you said there is someone else that has it worse, but I choose to complain about THIS! My days of normalcy are gone (or as normal as CF gets) & that SUCKS!

 

[Joanne]

Sean,
That is the glorious part of new lungs..... no more treatments, no more contemplating treatments, no rushing home so you can do treatments.....
the glory !!! It is lovely.....

But the drinking......no, life is too short, too wonderful and so much more to do than drink away the time. Breathe, Live, Adventure, Travel, meeting great people, finding inner solace. Drinking???? Heck no. Too many of our donors died because of drinking and crashing and dying and killing others.

Not sure how old you are, but I will assume pretty young that you are still quite the "drinker". Hopefully time will change quickly and you will see that more damage to your body is the last thing your CF needs and will see some light that there is more to life, even with CF lungs. But I would be careful to watch my drinking if I were you, so I can get to new lungs and feel the wonder of life to an even greater degree.

Okay, Joanne get off the soapbox......
Have a great day.... it is 20 degrees out, sunny, possible snow and I am heading outdoors for a walk and hoping for snow so I can shovel and plow.

Joanne Schum

 

[Scarlett81]

Hey Sd-

I know you're not gonna like this........but the drinking thing-no way. For a few reasons-like Joanne said, why have that be your 'fun' time? Sure maybe on a special occasion. I don't know, I don't consider that recreation. A lot of life goes by. Two, our cf livers have been through enough in life. Enough pills, iv's, radiation...Not to mention that alcohol to that extent just isn't plain good for sick people. Even healthy 'sick' people.

<img src="i/expressions/face-icon-small-frown.gif" border="0"> Why don't you try green tea! Take care of yourself SD.

 

[Jane]

Sean,

I have a card hanging on my bulletin board that says:

"Any idiot can face a crisis, its this day-to-day life that wears you out".

Anton Checkhov


P w/cf have so much crap to deal with just to get through the day. It is exhausting! I am so impressed by your determination to not miss treatments when you're tired or preoccupied (drunk). You are probably in the good health you are because of your commitment. With my boys sometimes (seldom) we just have too much going on to fit in the last saline, PT or g-tube feeding. We never skip medicine, but all the other thousand things sometimes take a back seat to a good night sleep. Sometimes we're just worn out.


I have 2 questions for you...

When do you sleep and How do you do the vest after a night of drinking? Don't you puke? lol



Jane

 

[JazzysMom]

I refrain my commenting on the excess drinking because I have experienced too much pain/sorrow/death in my life connected to alcohol/drugs. I wish to just say "Ditto". I will add that I find it ironic how one who has such passion for his belief in OO, other alternatives, works out & appears overall very healthy for a CFer would counteract that effort by overindulging on a regular basis.....Is this why you work so hard at your health so you can overindulge? So much for refraining my comments!

 

[anonymous]

chronic illness isn't for sissies.

 

[EnergyGal]

The liver is not that forgiving. IF one keeps on drinking there will be many problems later in life with cf or no cf.

Sounds like you live a life that one side of you takes great care of yourself with the determination to live a full life and the other part of you would love to piss away and get drunk and sleep like a baby.

I would think if you gave up drinking, worked out more often you would start sleeping much better.

 

[wanderlost]

Well I can be quite the drinker too...though I am on a 9 month hiatus <img src="i/expressions/face-icon-small-smile.gif" border="0">, but I don't do any treatments, so i cannot completely relate, but I ask, can you not do your treatments early before you go out for the night? Do they have to be done before bed?
Keep having fun (just remember to drink lots of water and flush out the old system <img src="i/expressions/face-icon-small-smile.gif" border="0"> )

 

[catboogie]

i know that it is the natural tendancy of threads to wander off from where they originally started from. as i see it, sean started this thread to express frustration with something. we all do this, we are all welcome to complain, that is part of why we are here for each other! anyway, i guess i am saying i think it is messed up that people take this "opportunity" to talk about not drinking. yes, that is a good point. but why reply to this thread? start another one instead of being critical of the person who was asking for understanding. there is nothing that says we must reply to whatever comes to our mind when we read a thread.

that said, sean, i agree with your frustration...i usually try to force myself to do my treatments, sometimes only some gets done and not all. i don't know what i would do with 3-4 nebs two times a day. sometimes i go to bed not doing treatment and wake up and do "extra good" therapy the next day. luckily my health is such that i can handle that, but i know this is not good, and i won't always be able to get away with it. i think i feel a lot of guilt about drinking sometimes -- although with me frequency is more the issue rather than excessive binges. but, life is a process. we work through what we can, and hope that each step will be more toward being the person we want to be.

 

[coltsfan715]

OMG I was thinking this just last night. I got together with friends after attending a memorial service for a friend of ours (killed in a auto accident amost a week ago) and we were just relaxing and reminiscing. They were drinking and hanging out, and I just sat there and enjoyed them drinking. I get tired when I drink and I knew if I had a drink, I wouldn't be driving home, I wouldn't even be able to stay awake til we left and I had to come home and do my meds. I so badly just wanted to have a few drinks and crash, but noooo. I come home exhausted from the day and have to stay up another 1-2 hrs doing meds and therapy.

It is a pain - but usually when I have plans set in advance I try to do my meds/treatments before I leave the house (considering that it isn't really early in the day). Normally I like to do my evening treatment sometime after 8pm at night - that is when it is most beneficial for me to do them cause they still help me sleep better after that time.

Lindsey

 

[NoExcuses]

.

 

[Diane]

Well Sean, i can sooooooo relate to what you are saying. I have come to realize that life as i knew it , has permanently changed. I feel so fortunate to have had such a healthy childhood and adolesence, but when i got b.cepacia things changed somewhat. Then i had massive hemoptysis and things changed DRAMATICALLY! I now no longer sleep flat in a bed, i sleep on my couch propped up on pillows. Who would think that laying down to go to sleep at night would become a privilege you could someday lose? When i do car shows in the summer, i am always one of the late commers. I have to do my vest in the morning along with pulmozyme and sometimes tobi, and the fact that i move like a sloth in the morning doesnt help either. I take a lot of ribbing about my lateness from people that dont know i have cf. They say i'm a princess and like to have my leisurly beauty sleep etc. etc. and i just take it all in stride. Everyone who knows me knows i dont go anywhere early, because i dont get to just wake up and roll like everyone else does. I WISH i could just roll out of bed and go about my day and not have anything else to do.

 

[Allie]

When Ry and I would go out for the evening, we always did his treatments before we left, otherwise we knew we wouldn't get them done. You just get too drunk, or too tired, or whatever, it's easier to do them beforehand.

It is really frustrating having to accomodate CF in your life, Sean, I know.

 

[anonymous]

whenever i think about how great a cure would be and how much my life would change if that happened, i always start with thinking how great it would be to be able to go places bar until late / vacation / just out to a friends house and not worry about doing a treatment when i get home or taking my breathing machine with me like on vacation... the breathing an coughing or lack there of would be great of course but i can't help think about the treatments... i honestly think when they do release the cure to the public that we won't know what to do without treatments to do... we would be feeling like we're missing something all the time... i know i would probably walk around with that "i think i forgot something but i cna't remember what" feelling all the time and it would definitely take some getting used to...

 

[anonymous]

I don't think SD was looking for comments about the evils of drinking. He was letting off a little steam about the treatments and how they interfere with a good time.

 

[JBUCCA]

i know this feeling... sometimes after along day w/ my 3 year old i just want to pass out and then im lieing in bed coughing my brains out, very sexy!!! lol and im like oopps now i got to get up and do my nebs,, it sucks then they make me wired and racey so im not tired no more. i dont sleep alot and when i do its cause i just popped a stick of xanax cause i need to sleep!!! and when i go out w/ the girls im always the one to not get so tipsy, i wish i could just eat a big fat hambuger and not worry about taking my creon... life could be worst but cf sure does make you think!!!

 

[thelizardqueen]

I can't say that I have regular treatments to do on a daily basis when I'm not sick. When I'm not sick all I have to do is physio and my inhaler. Those I always do before I go out, so that I don't have to do them when I get home at night. Same with if I'm sick and on Tobra for a couple of weeks or a month - I do them before I go out. I hate to say it, but if I go out early in the evening and can't do the treatment before I leave, I either make a point of getting home somewhat early, or if I can't I miss a treatment - because I know I'll be up early in the moring for my am one - and what's the point of doing treatment at 2am and then at 8 am. That being said I've given up my excessive drinking days. Its just not worth it to me to go out and get drunk, and then feel cr*ppy for the next day or two. My health is more important to me now, then going out and getting stupid drunk with my friends. A glass of wine once and a while at night is fine for me, but I can't go out and have a ton of drinks anymore, I just can't do it, nor do I miss it.

 

[Faust]

I don't mind peoples opinions regarding drinking, remember I am 35 years of age, I didn't just come down to earth with last tuesdays rain <img src="i/expressions/face-icon-small-smile.gif" border="0">

I know that alcohol is mostly a bad substance to injest, I say "mostly" because there have been good things found in Beer and Wine specifically, and some positive benefits to alcohol itself. That of course doesn't make it a swell substance. I primarily stick with beer. I'm not big on shots and liquor, with the exception of an occasional chicky fruity drink. I will tell you this, I generally (almost 100%) avoid drinking on the weekdays, and try to only drink once on the weekend. Which basically consists of me and some friends at a smoke free bar playing trivia, eating some pub grub, and drinking a few "biguns" of good quality beer and absolutely laughing our a*ses off!


To me, believe it or not, I think the overall risk vs reward when discussing beer + friends, I have much more reward than I do risk. The friendships I have made, the closeness I have experienced, the amazingly funny tales of stupidity I helped create, the things I have seen, the amount of laughter I have created and enjoyed myself, the list is very lengthy.


A long time ago I went in for my CF doc appointment, it was the first time I saw this doc (he is my current long time doc). Here I walk in @ 6 feet tall and 190 lbs of mostly ripped muscle, and my PFT's are well over 100% (I think they were near 110%), and very clear. He wanted to make sure I wasn't misdiagnosed somehow, so he had me genotyped. On my second visit with him he said "Ok, what are you doing to be in such good shape", I said "Lots of fried foods and good beer", and he chuckled and said "Well, it goes against everything I know, but, keep it up!".

That's how my doc is. He knows some things are inherantly bad in general, but some people appear to thrive with things that others are harmed with. I personally feel that as long as I don't go "overboard" with drinking, life in general is a much better experience for me for friday or sat night to include good friends, tons of laughter, good food, and some good beer.

I went for over a year of not having a single drop of alcohol. Ya know what I learned? Life is extremely boring to be sober 100% of the time, and it's downright miserable to be totally sober around others who have a good laughing buzz. I personally think that as long as you generally go by moderation, and most importantly keep your frequency of intake down to a reasonable level, and you are generally healthy, drinking on a friday or saturday night once a week (or rarely twice a week) and having a BLAST doing so, getting just a cool buzz and maintaining it, there is more positive to that than negative.


I'm not defending the use of alcohol for CF's, i'm just saying that for me, once a week with the right people and place is just too much fun not to enjoy it. BTW I have also had many liver function tests, and every time it comes back perfect. So given my general health now, my liver tests, and how much fun I have (and share the fun with you guys), i can't see too much of a logical reason to stop what i'm doing. I feel that as long as you arent chronic with alcohol consumption, and give your body a period of time to heal, you are ok. This week I drank Thursday night, and then Friday night, only thursday did I get a little pie-eyed, i'm going to 100% abstain tonight. The next time I might drink (it's not always a given, sometimes I go several weekends without a drop) might be next friday or saturday. And i'll be down at the local clean air pub playing trivia with friends and strangers, laughing our a*ses off, enjoying good food, and just having an amazingly fun time.

While I do agree with proper decisions health wise, i'd rather live to be 45 and have amazing memories and stories of a thoroughly lived life, than live to be 55 and have lived a relatively sterile existance.

 

[thelizardqueen]

Isn't CF a wonder? What works for some, doesn't work for all.