Oh sleep. Where have you gone, and why have you left me? Some nights i can sleep for 13 hours straight, yet other nights, i'll go to bed early only to wake up roughly 3 hours later, and remain awake for an additional 3. I fight hard to get back to sleep but to no avail. It's upsetting and frustrating, especially b/c I am so tired as it is, that this just adds to my frustration.
I didn't fall asleep until 11pm last night. I woke up at 12:30 am and couldn't fall back asleep until 3:30. I tried reading, i tried watching TV, and it just made it worse. I seriously wanted to sit in bed and cry. I began rolling around so much that I got out of breath for a very long time which only upset me more. I tried sleeping on the opposite end of my bed but to no avail. I ended up getting tangled up really bad in my oxygen tubing which just made me angrier.
Sleeping with lung disease is a love/hate relationship. You are tired all the time and can sleep for hours on end; but then there are also times where sleep just doesn't come. One thing about end-stage lung disease and low oxygen is that you get some pretty messed up dreams b/c of it. Last night i had a dream that i was with Grant and our siblings got picked up by a tidal wave on another planet ( i think it was Jupiter or something), where they found a skeleton of an early human and it had something to do with trying to cure lung disease, which is why our siblings left the planet in the first place. It was weird and repetative and it kept my up b/c it was scary.
I am constantly waking up b/c i am afriad my oxygen will fall off and I will stop breathing. I cannot sleep with my covers too close to my face b/c it makes me feel like I am suffocating. I can however, still sleep on my stomach so that is good. Not always, but sometimes. If i do sleep when my oxygen falls off i have a very difficult time breathing. It's both scary and fascinating as to how something like this can happen.
I have another appt with my respirologist Sept 10th and I am looking forward to it. I will have to schedule a chest x-ray for the transplant place and once i get it i will post a picture of it hopefully! I am excited to get the ball on tx rolling even more, as some days i feel like it can't come soon enough, yet others i feel pretty good. It's weird; it really is.
The next step is breaking the news to my mum's side of the family about me needing a transplant. I am afraid all i will get is pity which is NOT what i want. Oh well....what can you do?