“my lungs will fill and then deflate…”

by kaleidegirl

i’ve been in a dark place for awhile now and i’m trying to climb out of it. i really am. well truth be told some days i don’t try as hard as others. it’s a dark place where sometimes i can’t find the strength to care enough to do the climbing.

i know that, especially given my illness, i should be living life every day to the fullest. i know this and i want this. i feel incredibly ashamed and guilty for the emptiness in my life. my day to day. i worry often that new lungs will be wasted on me. it is really hard to admit that. maybe it is one of those things you don’t say out loud. however, it is my hope that putting things out into the world holds me accountable to change them. in an effort to find a way out of this i am trying to remember what gave me joy when i was going about life taking my health for granted. this has proved to be rather difficult. it is easy to assume that things i once looked forward to are not things i can look forward to anymore. i’m not just sitting around feeling sorry for myself. i have a whole new reality to adjust to.

everything revolves around my busted lungs. my sleep has been so severely disrupted since having to stop taking my anxiety medication back in June/July. certain medications are off limits, because of the transplant. i have been super focused on and obsessed with diet and exercise. i have to get and keep my weight down, because of the transplant. my anxiety is turned up to 11 almost all the time. this has been especially awful the last month, since i was officially put on the transplant list. i have realized this morning that i have to give up on a medication that has helped immensely with my appetite. i had my suspicions last night and since waking up around 4 am this morning i have realized it is very likely increasing my anxiety even more than everything else already is. so now i have to get through the process of it leaving my system and i’m hoping it isn’t as bad as the first time i had to stop it. it shouldn’t be, i’m at a much lower dose. aannnd this is my life. medications and did i eat the wrong thing and i’m such a failure because i didn’t exercise and will i get any sleep tonight?

not even 8 am and i’m struggling. i tell myself i will get back to doing my yoga every day. soon as i finish my coffee just like i used to, everyday. when i was “so strong” and everyone was so proud of me. people keep telling me how “good” i look. they say i look strong, healthy…i feel weak, tired and fat. i tell myself i will practice the piano today. then i search. i search my brain. i search the room. how will i fill this day?

i decide i have to deal with the day as it happens. one day at a time is too much. i’ll enjoy my coffee. i’ll do my workout. i’ll hope that makes me feel better. hope i feel the strength people say they see. i really need to get through this week. i’m pretty anxious about my first follow up since being listed. i’m ready for Friday to be over. if i have to distract myself on my laptop all day that is fine. i will do what i have to do to get through this anxiety and maybe i’ll keep getting sleep with the new sleep med i’m on and sleep better when this other med leaves my system. maybe. maybe things will be easier when i am sleeping again. i have to believe i will get back to some kind of real sleep. i think i slept about 5 hours last night and only woke up a couple times. it has to be getting better.

i’m trying.