hey...i am new to this forum. my name is leeza and i`m 22. since my last hospital visit i cannot go back to my old life anymore. i think my health state is average, not very good, but also not totally bad.
till i was 18 i didn`t bother that much about cf, but with 18 years i caught up pseudomonas, had two i.v. therapies to eradicate it, which didn`t work.
since that age i am much more confronted with everything. before that i always thought i would never end up that bad, my parents also made me believe me i have an easier kind of cf, but by now i do not believe that anymore.
i continued my life , but it wasn`t the same. now every day is spent with physiotherapy and inhalations of colistin and pulmozyme, three times i week i go to the fitness studio. i know that is pretty normal for cf, but i once had a different life and sometimes i can`t believe that this is it...
i have no freetime anymore, because every bit of freetime i don`t spend with other people, i spend with this damn therapy or with sports.
sometimes, when i read the question in some homepages about people`s hobbies i think that i could write " therapy and sports" into that space.
i can`t go away for a´holiday anymore without taking my inhalations with me and it sometimes is really hard to explain that to people you are supposed to share the room with you.
the last years i really tried to keep positive and i did everything i could about the therapy and sports...but still my lung function went down.
and when i think of the fact that cf gets worse with age, i really get to the point where i am not willing to take this anymore, i just cannot imagine it! i am young and i am leading such an active life...i love my job, i love university and actually i love living, but i can`t imagine, giving that up. and i can`t imagine a life without the perspective of a successful job, of maybe having a family...i don`t know what to fight for in these moments and i just can`t believe all this is really happening.
sometimes when i am driving in my car i really get to think " what if I just crashed into a tree? then at least i had a quite normal life until now and wouldn`t have to take the future. do you never have these ideas?
a friend of mine has cancer and it is really really hard, i know- but she at least has a chance that it could be cured...so she has a reason to fight and an aim when she gets out of the hospital.
but for me it`s just that this is never going to stop and i can`t see my aim anywhere...
i feel really lost...
till i was 18 i didn`t bother that much about cf, but with 18 years i caught up pseudomonas, had two i.v. therapies to eradicate it, which didn`t work.
since that age i am much more confronted with everything. before that i always thought i would never end up that bad, my parents also made me believe me i have an easier kind of cf, but by now i do not believe that anymore.
i continued my life , but it wasn`t the same. now every day is spent with physiotherapy and inhalations of colistin and pulmozyme, three times i week i go to the fitness studio. i know that is pretty normal for cf, but i once had a different life and sometimes i can`t believe that this is it...
i have no freetime anymore, because every bit of freetime i don`t spend with other people, i spend with this damn therapy or with sports.
sometimes, when i read the question in some homepages about people`s hobbies i think that i could write " therapy and sports" into that space.
i can`t go away for a´holiday anymore without taking my inhalations with me and it sometimes is really hard to explain that to people you are supposed to share the room with you.
the last years i really tried to keep positive and i did everything i could about the therapy and sports...but still my lung function went down.
and when i think of the fact that cf gets worse with age, i really get to the point where i am not willing to take this anymore, i just cannot imagine it! i am young and i am leading such an active life...i love my job, i love university and actually i love living, but i can`t imagine, giving that up. and i can`t imagine a life without the perspective of a successful job, of maybe having a family...i don`t know what to fight for in these moments and i just can`t believe all this is really happening.
sometimes when i am driving in my car i really get to think " what if I just crashed into a tree? then at least i had a quite normal life until now and wouldn`t have to take the future. do you never have these ideas?
a friend of mine has cancer and it is really really hard, i know- but she at least has a chance that it could be cured...so she has a reason to fight and an aim when she gets out of the hospital.
but for me it`s just that this is never going to stop and i can`t see my aim anywhere...
i feel really lost...