Life,School,...,Heck Everything Under the Sun, and CF

[m.coteklein]

Hi everyone!

You know, it is often said that those with CF develop a great habit of time management due to all of the medications and adversity we face during any given day-month-year-life. But we've all had that time frame when we get hit with a nasty infection and then on top of all of the therapies we do everyday we're thrown that extra burden of those intense i.v.'s or oral antibiotics or something . So my question to everyone here is "how did you get through it?", What did you find as your mean of success through this time (i.e. what got you through it?). I'll go ahead and start off by saying I'm a college student and I battle these questions all the time. I find myself running out of minutes/hours every day to get done what I need to get accomplished for school between the usual therapies and i.v. treatment and,of course, exercise. Maybe what I'm trying to ask is "How do you do it?","What is your schedule, routine, thoughts?", "what is your personal secret that gets you through the day-week-or...whatever?!" I think I speak for all of us when I say "I want to hear about your day (parents, adults, kids, CF, no CF)." because everyone is doing something or has something special that gets them through the day and I want to know, as I am sue everyone else does, what that thing is (if you don't mind sharing of course) because that particular thing(s) has made you a success. Open to everyone! Please respond!...for everyone to see!

p.s. (don't have to answer all of the questions, I definitely went on a few tangents on this one: Any answer will do though - even unrelated!)

 

[sdeuber]

I put exercise into my calendar and block it out so work cannot schedule anything over it. I use iPhone alarms to remind me of my meds.
I bought a second nebulizer (PARI trek) that sits on my desk so I don't forget to inhale while typing for work.

 

[gunelle]

I bought a quicker nebulizer than I had at the beginning of my diagnosis. The e-flow. I now get it for free along with the ineb, which has severely reduced my treatment time. I do treatments in the morning whilst preparing for work. I asked for a flexible schedule at work. I try not to see the preparation time of the meds as a burden, but something that gives me quality of life in the end. When on. IVs I cannot work, as in Madrid we only have the vertical drop ivs, and it takes forever. I plan my day quite tight and do not change my plans and do spur of the moment things. If I go somewhere, e.g. to see my mil, I bring my symbicort inhaler, which I take half an hour before treatments, and take it while visiting and then once home, I can do my treatments right away and not wait half an hour. I could also do my inhaler on the train, but I need to clearmy mouth afterand gurgle, which isn't really appropriate on the train

 

[mamaScarlett]

Wow loaded question! Constant battle.I have two kids, a husband, so between that, running a home, homeschooling, doing treatments, maintaining an exercise schedule, volunteer work, etc its many full time jobs. The key is discipline. Being a scheduled person.
I Go to bed early, wake early. I get my pt, vitamins, shakes etc done before the household wakes up. A healthy mommy equals a happy family so I never ever ever skip treatments or caring for myself. I use that time to read, write emails, watch tv..so it isn't only a chore...even though it is a chore. I belong to a gym that has a daycare in it, and kids exercise classes so we go 3 times a week. I am a runner, so I can log about 10 miles a week while they are in the kids area doing their thing. That's a huge help! I also just completed my second half marathon..taking that time is important.
When you live hard you play hard!
When I need IVs, life basically stops for that period of time so I focus on that, and keeping peace in the house.. movies, getting takeout, sitting and talking, reading together..time stops in a way, as much as possible. and of course relying on the kindness of family that chips in is invaluable.
Usually that lasts 3 wks tops and I can recover.


Is it all worth it? YES!!!

 

[ryry11]

I'm not sure, really. I just make it work. I would probably do better if I had some sort of schedule, but I also am in law school, and things come up all the time. I try to build exercise into my daily routine (walking to the next bus stop instead of the one closest to my house, for example), and I recently took a Flutter to school so that I can do some airway clearance during the middle of the day if I need to. I try to use my time while I am doing treatments as productively as possible, even if that's just taking a break and then getting back to work afterwards. I have realized over time that things like going to school "just for my classes" and coming home (not staying to study, etc.) hurts me more in the long run. I tell my friends, profs, etc. about what's going on so that I have support if there's a problem.
I try to:
Get in 10,000 steps a day when I'm healthy, and at least some walking when I'm under the weather (I really should just aim for 10,000 every day, but I'm struggling with getting them in when I'm healthy as is, and I walk 5x slower while I'm sick.) I have a Fitbit that I wear most days.
Eat 3 meals a day (again, this is sometimes dependent on how I'm feeling; when I'm sick, it's "eat whenever the hell I have a desire to, and whatever I feel like. I call it the "milkshake phase" of being sick, because I usually end up living on milkshakes to get some calories in me.) I usually have a tomato, cheese, and bacon breakfast sandwich, leftovers of some sort for dinner, and god-only-knows for dinner. See my first sentence. Nothing is predictable, so I eat what I can to get in the three meals.)
Sleep at least 6 hours a night on weekdays and as many as physically possible on the weekends. I do best with 9 every night but the minimum I need to do okay is 6, so I shoot for that and consider everything over that bonus and then make up the sleep debt on the weekend.
Do airway clearance twice a day. I'm pretty good at hitting this; I do vest for half an hour twice a day.
Practice some sort of self-care daily (journaling, reading fiction, blogging, hanging out with friends, etc.) to get my mind off of the CF emotional issues that we all struggle with.

I don't really know how I do it, honestly.

 

[DonM]

I'm 18 years old and have recently dropped the term because of being hospitalized too much. But, last term, even though not healthy Managed to exercise and get pretty good grades, the trick for me was to do as much work as possible while actually on campus which I found made things easier when I went to the gym and eventually got home. My motivation and second reason would have to be my friend that had the same classes, I could afford to skip somedays and get the jist of the lecture from him as well as study with him. Since I'm not a "study all day at home" person I find myself more productive on campus than if I leave with homework. With only three treatments a day and no IVs it's manageable.

 

[JakeS]

There is no way around it it is hard. What I do is make sure once a month, whether I feel like it or not, the pantry is stocked, meds bought, staple food ingrediants in fridge, and then when I feel good I make a month's worth of food, and then put the separate items, sauces, prepared veggies, basically two or three different entree's worth of food in food saver bags, and seal up portion's. Then freeze it. By taking the air out of the bag, the food savor, keeps things fresh, and not freezer burnt.
Then, when in a rush, or down, and can't cook, I always have food prepared. It takes awhile to get the hang of it, but I live by myself, and my family is on the other side of the country, so I am my support group.
With that said, if you are near family, and can afford it, make them your support group. Tell them when you are overwhelmed, and let them help.
Another big time saver, is once a week, put all your meds in morning, lunch, dinner, bed med jars, I need two, with seven day, four times dosage, containers. This gives you back about twenty minutes a day that you are not unscrewing medicine jars. Sounds trivial but it adds up.
Collage, can be difficult, because you might not have acsess to a good kitchen, in which case, go on the unlimited meal plan.
Try and pack your lunch the night before, etc. Good luck.

 

[CMG417]

Friday off, on-line class, rest, lots of planning...
Daughter, 21 w/cf, will graduate in 2 months (BS/Psych & Bio minor). For 4 years arranged her f/t schedule (15-19 credits per semester) so she never took a class on Friday. This meant attending classes, coming home 1-2 x's during the day, then going back. During the breaks, she could eat, relax, study, do meds, etc. We live 20 mins from campus. Her school offered some courses on-line and every semester took one. She was vigilant about Friday off and the on-line class, which meant her schedule had to be planned out way before the actual semester's registration date. If the registration date/time was inconvenient (during: drs apt, class, work, shadowing) she still did it at her assigned time, bringing her computer to make sure she got in the classes before they filled up. She was not without health issues during the 4 years (surgeries, hospitalizations, IVs) but when these situations came up, she worked directly with each individual professor to work it out. Some were more understanding than others (one or two not all). Sees boyfriend, friends and dr's Thurs-Sat. Bed by 10pm on school nights, no all-nighters during the week. If tired or doesn't feel well, she will decline plans.

Hard, yes (I could not do it) but worth it. I have seen her struggle through tough times but she has a plan, is dedicated and so far, so good. After graduation, continue working for a year, she's a physical therapy aid, to finish her required patient care hours for PA school which starts fall 2015.