I'm still not feeling awesome. Ok, to be honest, I'm still feeling pretty crappy. The good thing is that all of my symptoms have pretty much gone. No more runny nose or coughing up gunk every 5 minutes. I'm just lacking all my energy to do anything. Good thing Isaiah is here to do laundry and dishes.
After laying around for 3 days, I forced myself to get out of bed yesterday to go to my cousins for the last swim of the summer. I felt better once I was there but once again crashed out once we returned home. I keep wondering if I'm finally now getting the depression that the social worker told me everyone who is listed ends up with and on anti-depressants. However, five days of feeling tired and lethargic does not count as actual depression.
I'm hoping it's just a side-effect of the meds and that I'll feel better when they are finished. Or maybe I'm trapped in a crazy cycle where the meds are making me tired and being tired all the time is making me depressed which is making me tired. I'm going to talk to the nurse about it tomorrow when I get my PICC line dressing changed.
I think part of the problem though, aside from the meds, is that I feel like my hope is slipping away. You know, that hope I once felt about how I was going to get a 'second chance' and feel awesome and then go travel madly around the world while feeling awesome. Instead, I've been slowly declining all summer and the meds aren't fixing me very much anymore. Eventually, I'm going to run out of room to decline and the shiny new lungs I was promised won't make it in time.
It isn't really even the length of wait that is super bumming me out (even though it slowly is). It's the fact that there is never any change. Apart from now being in the 'higher priority group', there is no indication that today is one day closer to the day I'm going to get my lungs. Because it isn't a 'first come, first serve' system, I have the same probability of getting lungs tonight as I do 3 months from now.
And honestly, when I was first listed, I didn't have full confidence that the transplant was going to happen or even that it would help that much if it did. Then, however, I started seeing how much it changed peoples lives and I started getting hopeful. I started to dream of all the things I would do once I got my lungs: hike, run, bike, travel, jump, walk up a flight of stairs, swim, etc... But now I just feel like it was all just a fantasy dream and that all my hope is gone forever.
Before you start freaking out, I''ll be ok. I'm confident I can figure this out. Either by changing meds or getting more meds or just giving myself time to be sad, I'll get through this. It's just a 'down' part of the ups and downs that happen while being chronically ill.