Treatment routine and social life

[HollyCatheryn]

Oh no! Not another question about routines! Yes. OK, now that I'm getting the hang of the new routine, what di I do with the social life that just flew out the window? Do you just leave in the middle of a gathering because it's almost time for a tx? If company is at your house, do you just say, "Pardon me while I do my tx" if it gets to be that time? Do you usher everyone out at a set time so you gan do the tx? We like to be social and we have lots of family here in the area. I hate to just never do things in the evening because I have to get hoe to a tx.Help! I guess I'm trying to figure out how much of a tx-nazi to be (to use a Seinfeld term).

 

[Joblazer86]

I guess when you put in tx you mean treatment. It is hard to balance social life with this disease but there is some ways around it. I personally state that I will be back and go home to do it or if I am at my house I will leave for about 20 mins. I use to skip it sometimes b/c I figure it was alright but it catches up with you sooner or later. All my family and friends understand that I need to do it and they don't mind. You can also look into getting a car nebulizer if you are at someone's house and it is to much of a inconvience to go home.

 

[Starfall99]

A lot of times if I know I'm going to be out late and need a treatment I'll bring a nebulizer with me. Then it depends on the crowd; sometimes I'll just find a semi-private place to do it and then rejoin the group, or if it's a group of friends who I'm really comfortable with I'll hang out with them while doing it and no one bats an eye. Some of my friends have a "nebbing" routine with me where they like to keep me company while I neb. I also leave an old nebulizer at work to use during the day, and everyone is totally used to it. Of course this is all just nebulizer treatments, I'm pretty bad about doing the full neb+chest PT+airway clearance thing so that would probably be a different story -- though I do have a handful of friends who I've taught to give me chest PT and have seen the whole routine and are used to it. The way I figure it, everyone else is going to take their cues on comfort level from me -- so if you make a point of not hiding it and treat it like just a normal part of your routine that isn't a big deal, your friends will view it that way too. Just my 2 cents! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Eliana
25 w/ cf

 

[anonymous]

I can relate. This may not even work for you, but I do my treatments at 6 am & around 6 pm, then I have them out of the way before a lot of the social events we have. Obviously, this doesn't always work, if I'm not home at 6 pm, then I do them later in the evening, but that kind of throws my routine off for he next morning,<img src="i/expressions/face-icon-small-confused.gif" border="0"> because I try to do them 12 hours apart! Just do the best you can and try to get them in when possible, as I'm sure you're doing already<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[HollyCatheryn]

comfort level makes a lot of sense! I need to remember that. thank you. Input is always great. I'm trying to learn how to be more proactive with my health rather than just maintaining and waiting for it to get bad.

 

[anonymous]

My friends are told to just deal with me doing tx - I have done my own IV tx in cafes, movies, at parties etc (in someone's bedroom or oon the lounge out of the way a bit) - Social drinking is hard cos so many of my friends do - They get told by me when i am starting to get a cough that I can't drink for a while or stay up late etc

 

[anonymous]

I agree that your friend's comfort level will come from however you act yourself. Many times when I have had friends come over they see my vest machine and ask what it is. They know I have CF so I just tell them it is what I use to do my treatments. Then I tell put the vest on them without telling them what it does, put it on full speed, and just sit back and watch them freak out! This usually tends to be therapeutic for me because I laugh so hard I cough stuff up. They have fun and see that I have a good attitude about my treatments so they aren't uncomfortable when I have to do it in front of them.

 

[Starfall99]

LOL! Ambushing people with the vest, that's great! My stepbrother and his friends liked to put on my vest, crank it up to 25, and let 'er rip! He even said it would be cooler if it was a full body suit -- I told him he's INSANE! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Eliana
25 w/ cf