whats it like?

hello, i know its been a while since i posted, i been very and i mean very sick lately. something i been hearing a lot from people have been making me think a lot. people been asking me whats it like to have cf. i never know what to say besides i live life to the fullest i can or able to everyday and i try to hide all the sad feelings i have. so what i have done is wrote a song/poem. i was hoping to get some feedback on it before i publish it. so here it is

 

   what is it like?

what is it like

to live life normal?

what is like

not to take medications everyday?

what is it like

to know you can live to be

80 or ever 100?

can someone please tell me

how is a 20 yr old live??

can someone please tell me

how does it feel to walk outside

not having fingers pointed at you

for wearing a picc

whats it like to go to bed

no oxygen

you can play and not stop b/c u cant breathe

im tired of my life

im tired of living this wayyyyyy

i want to be normal

i want to be old

i want to be the one

whos watching my son get married

have kids of his own

they give me 10 to 15 yrs to live

why?

what did i do wrong?

im not even 25

i didnt ask for this

i didnt ask to be sick

so why is everyone leaving

my side

im scared

i just want to cry

why why why why

i want to be normal

im tired of crying inside

how does it feel

to enjoy life

with no exceptions

to do what

you want to do

to be an actress

 

ok well thats part of it i cant finsih it with my tears

so i hope ppl who are parents of a cfer can somewhat understand the things that go thru our heads we may have what ppl call big hears, always smiling but inside were scared,were holding on with everything we have. we get tired of being picked on of people stop talking because were sick.i wish for some many things but i cant do any of em. they said the disease is really getting bad and ill be luck to reach 35 but i always smile i always laugh and when im in bed and my son and father are asleep i do the opposite i cry wondering will i see tomorrow and i pray asking why? what am i being punished for? i wish i had my sisters strength b/c im barly making it if it wasnt for my son who knows i prob would have already given up.

Faithful

 

okay, I cryed while reading your poem. mostly because it looks so silimer to poetry I have written. there is nothing like telling somone you have CF, and the only thing they ask is "when are you going to die?" people do ask how it feels, but there are so many differend levels to living with CF. fist is the pain, sometimes you lungs hurt, lungs colaps, I have bad intestines, and they like to randomly stop, causes great pain, I have scienus problems, and diabeties, liver disease, everything that goes with it. it hurts. but then there is the emotion, the guilt of not being the child your parents thought they were going to have, taking time and attention away from your sibilings, haveing to spend so much time in the hospital, not commiting to anything because you don't know if you will get sick. and then there is haveing friends with CF, watching them die all around you, and leaveing you, still here doing farly well. how can you take all that and make a "normal" person understand any of it? that is somthing I have been strugling with, but just as hard for them to understand our is for us to understand their lifes. to go to bed knowing that you will wake up well and happy in the morning, for your bigest problem to be weather or not you should break up with your boyfriend, or what movie to see tonight.
maybe some day I will get the courage to post my poetry here, but for now, it is just mine.

I know exactly how you feel. I have CF too, and a few people have said some pretty horrible things to me. I'd just like them to be in our shoes and see how they like it.

  I cried when I read that. I often feel the same way even though im only 13 i find myself wondering if i will be able to achieve my dream of being a docter.

I know exactly how you feel aswell, made me cry too. It's weird how you can't really explain how it feels to live with cf to someone who doesn't have it, they'll never know how it feels.