living on your own

[anonymous]

hi there! i am quite new to this forum, i`m lisa from europe and i found this one by coincidence. i `m 20 years old, go to university, study psychology and something else that has to do with cultures!
I live on my own in the students home and today i had a really bad day!
in the morning i always do my therapy, i take pulmoyzme, have breakfast, do some kind of sport (cycling or jogging), then i do the breathing therapy and afterwards i inhale colistine. altogether that takes me like 2 1/2 hours and when i`m finished i`m really tired.
but the thing is- cause i live without my parents , after the whole stuff therapy, there is either ALWAYS some household stuff to do like shopping, washing clothes, cleaning, hoovering, cooking....or some university course to go to. and i am so tired that sometimes i seem to take forever to do that...
and then the whole day seems so much to short for me,,,and i wanna meet friends too and do hobbies...
and sometimes it feels like sooooo much!!!!!!!
well i had a really bad cold, so today i didn`t feel well and it took me 3 hours to do the stuff. and then the washing mashine broke down too. so i had to drive home to my parents and wash the things there. when i had put everything in the mashine i had a talk with my sister. after 1/2 hour the clothes were ready to be taken out, but i really really needed a little while to relax, so i kept sitting in our living room, when suddenly my grandma came in and started calling me so lazy that i didn`t put the clothes out on the balcony to get dry. i told her i was tired and all she had to say was asking why and that i had nothing to do anyway ( she thinks when you`re 20 and a student you don`t have a regular work so your whole day is just freetime or whatever) and oh how easy my life would be...
that made me soooooo angry cause she always talks like that! and my parents they don`t understand it either...and many of my friends ...

they think i am lazy or whatever....cause normally students life should be not such a hard time....but they `DON`T SEE the other stuff i`m doing!!!!!and it really IS exhausting to do all the therapy AND the other normal things in life! it really frustrates me!

like when university starts at 9 in the morning i get up at 6 to finish the things in the morning- so of <u>course</u>i am tired when i am in university and then people keep asking me "what`s so bad about getting up around 9 o clock?"
i have always done all the things i wanted and didn`t let CF hold me back but it can hurt when people don`t understand that....
have you gone through this too?
thanks and sorry for writing soooo long! hugs lisa

 

[anonymous]

I can't really give you advice on how to deal with people who think your lazy and cannot understand whatsoever, but I can say I understand how you feel. I get the same thing. I many times come home from work and curl up in a ball and have only enough energy to breath, so I understand. Others sometimes just cannot get it. They cannot understand that it's chronic and wears you down constantly. I've heard the same kind of comments from people that know I have CF. Saying things like, well if you'd just try harder, or if you'd just take care of yourself better, without even knowing how hard I try to stay healthy. I am just trying to learn to let it go in one ear out the other. I hope it helps to just know you are not alone.

 

[anonymous]

Hi,

I´m from Germany, 43, female with cf and cfrd. Did you hear of the new Pari e-flow nebulizer? Its much faster to inhale everything with it, so it saves you a lot of time you can use for other things!
Another thing I do: I do only buy clothes that need no ironing! Just "wash and go"! Washing day for me is mostly sunday, when I´m at home. Maybe you could do some kind of sports at home, while the machine is washing.
If you want to go out with friends, why not for dancing, jogging, cycling, tennis or something like that, so you do sports, but not alone in the morning.
I do also not much cooking any more. Depends on your financials, but you can also go to a restaurant with friends and the "positive" thing about cf is, you can eat also "junkfood", which doesn´t cost much of your time and money...
I´m also lucky, because my parents always give me a hand when I need it; maybe you should talk to your parents and tell them that you could need some help sometimes. When you compare male and female people, the men ( not only with cf) do nearly always get help from their mothers when leaving home, like washing, ironing, cleaning ( or the girlfriend/wife does it for them...). Thats something getting on my nerves sometimes! I had different boyfriends during the years, but they all had to do their ironing by themselves and help me cleaning and so on (some men don´t like that, but thats not my problem!)
Do your friends know about your "daily special program"? If not, tell them!!! And when they catch a cold and are coughing hard, remind them, that this is the feeling you have most of the time!

Good luck

Uli

 

[anonymous]

thank you so much for your answers! I was in croatia for a holiday the last week so i couldn`t answer earlier! it`s good to hear i`m not the only one who feels this way, that others have experienced such situations too.
i have heard about the pari e-flow. is it really that much better? i´ve just seen that it is smaller and doesn`t make so much noise- which is also quite important. i am just not sure if the insurance (hope that is the right english word) will pay...did they pay yours?
that`s cool , ulli, you are from germany- i am from austria=) where from germany are you from? do you have an apartment then?
yeah that with washing and ironing is a good idea...and sport with friends is better too....
hmm well my friends don`t all know about cf but i`ve told the closest people by now--- but that`s something really hard for me... i have started telling people about it just 2 years ago...but i probably should tell more people to make them understand.
my mum do helps me out sometimes, but well i really wanna try to live independent...which is not so easy<img src="i/expressions/face-icon-small-sad.gif" border="0">
you`re right about the men<img src="i/expressions/face-icon-small-wink.gif" border="0"> altough i am only 20 i have also experienced such guys...that really sucks<img src="i/expressions/face-icon-small-wink.gif" border="0">
thx for your answers and have a nice day! bye!!!
lisa, 20, cf