Keeping healthy balance

[Rickengelage]

Hey everyone

I feel like its super normal to have a lazy ass day, but if u have cf you pay a price for it.
I feel like i cant really have a lazy ass day without feeling like shit the next day.

I try to workout alot and i do, and then when I take just one, lazy day, one day of being a little slacky with doing my meds on time and just stay in bed a lil longer than usual...
I pay a huge price for it

By feeling pain in my lungs
Mucus build up etc

I think its neccassary to balance working out and lazy day now and then... And i can be super lazy.

So my questio is, how do u guys have lazy days? Or how do u avoid them?
Or make them somehow have less consiquences.

Thanks

 

[Aboveallislove]

Hey Rick,
Not sure if this helps because it's from a parent trying to give a 5 year old a lazy a$$ day, but we do lazy with other things. So we might take a break from having school that day, getting dressed in the morning, or picking up toys. Yes, it can get messy and stinky as a result, but it is way of giving some "off time" to the hectic normal of CF. Are you able to find other things to be lazy with that might give you some sense of sitting on your duff?

 

[Rickengelage]

Hey aboveall

Thanks for the reply

Its a good tip, to try and be lazy in other areas.
Ill have to think about it.
I find that cf takes up alot of time and things u have to do.
Sometimes i just feel like **** it, like i want a break.
But there is no room for that.

But maybe in other areas there is.
Ill try think of some but its hard cuz ive been getting sicker lately and everything kind of started to become about cf in my life lately
Which is going on for quiete a while now and its starting to get annoying

Im trying to get back to a something more normal life but its hard.

And people arround me find it very difficult to relate to that.

 

[Ratatosk]

I'm sure it feels like the movie Groundhog's Day -- same thing over and over day in day out -- treatments, working out.... DS is 11 and when asked what he wants to do on the weekends, he'll say "I want to be a lump". Still does his treatments, goes for a walk with me & the dog (during the week he's in activities), but otherwise he plays computer games, watches Netflix or Youtube and pretty much refuses to bathe or change clothes. Not like he has to be anywhere, so as long as he cleans up Sunday night or Monday morning in time for school we really don't care.

 

[Aboveallislove]

Hey,
A couple more thoughts: For me one of the things that is the most draining is to constantly wash & sterilize the nebulizers. At one point when I was at a breaking point, I bought a case of disposables like you use in the hospital and just having that for a couple weeks here and there really helped. I ended up getting locally, but the RT had been working with me to get at cost. Wonder if that might give you a chance to have a few lazy days in between.

Second, not sure how you "operate," but I feel "lazy" when I stay up late and do tv or movie marathons, Foyle's War, the House of Cards (the original British series). Wondering if you did something like that but did late night like midnight treatments in the midst of the marathon and then slept in some might give you a feeling of it being a break?

Finally, Ratatosk: Thanks for making me not feel like a bad parent. After typing I thought everyone's gonna think I'm neglectful not having him get dressed!

 

[2005CFmom]

Amen to keeping up on nebs being draining. Since I am the parent and not the patient I don't have the same daily schedule to maintain. I think getting disposable nebs and taking a break from the cleaning is a great idea. It gets your treatments done without creating more work. I will have to order some for my daughter since she is going off to college in the fall. It will be great for her to have during finals week! And I will admit that on most days my daughters stay in the PJ's until we have to leave the house. They get the 5:30 PM warning, "Daddy is on the home, get dressed so we can go out'". I guess that is one of the advantages of homeschooling.

 

[nmw0615]

I'm 25, still live with my parents. I really want to move out on my own, but my health isn't at a point where that's a good idea. Instead, I sometimes take advantage of my parents being around. My "lazy days" usually still involve treatments, but my mom or dad pull everything together and wash afterwards. When I'm in a healthy period, I might skip a Saturday morning best treatment in favor of sleeping. As long as I don't do it often, and only do it when I'm healthy, I've felt okay.

To the parents: when I was growing up, I could call a "mind break" day. I didn't have to go to school, my mom and I would go out to eat, and I'd chill out in sweatpants all day. I usually ended up skipping my treatment that day, too. I think I got one mind break day for every two month period. They were rare, but I always felt 100x better after them.

 

[Aboveallislove]

Thanks NMR for the dea and knowing it does help. We don't skip the treatments but do those days pretty frequently...a few times a month with no school, lounging, mcdoandls etc. I homeschool year round seven days a week so we don't do much every day so he has breaks and the when he or I are burnt out we don't worry and just take a day off. It's great to now how mic that heled...we will have to come up with a fun name for it!

 

[TreasureGoddess]

Rick, ask around for someone with a mini fridge not being used. Set up one in your bedroom. Then you only have to stumble from bed to the fridge and back for your nebulized meds. Take a day every so often and spend in bed, but still do your meds & treatments. Video game out, watch movies, etc. Hook yourself up to the vest (what do you use for air clearance?) and shake away while you're vegging out in bed. Start the day with a long, hot shower and hack out as much crud as you can first, that will allow your day to be easier with the lungs feeling good for the start. Another option is to go for walk/jog/workout in the morning, then relax the rest of the day as your "tune out" day.

It stinks, but you really can't afford to take a break from the meds and treatments as that's what is keeping the infections and congestion from making things worse. You can decide to not go to work for a day and let your mind take a break. You can minimize the set-up to getting things ready once a week for the week ahead so in the mornings & nights you just pop open one container with the meds already sorted. Little things like that do add up to less med work during the day.