Hello World!
Life has been a roller coaster these days. Most days I'm me and I feel like nothings change. But some days I just want to roll over and give up! I feel like every time I start to gain any ground with either my weight or lungs the other craps out.
I just went through a month or so of weight problems. Couldn't keep any weight on me. But my lungs were doing fine. They weren't getting better but they we staying stable. I manged to attend 2 weddings, both with minimal oxygen! About 3-4 days after the 2nd wedding CRASH! Lungs decided they didn't want to cooperate anymore. My weight however.... stable. Which is good.
I had the Kmart incident as previously blogged and things are just getting crummier and crummier. Walking just exhausts me. Its so tiring. I go to Pulmonary Rehab and it bums me out a little bit to see I'm not where I was 2 yrs or 1 yr ago. I need more oxygen, I walk slower on the treadmill, I can't go as far either. It just sucks. Stairs and inclines were already hard and now they are almost impossible. Everyone says exercise, exercise, exercise.... especially waiting for transplant. Well I'm trying but it is soooo hard. I really hate it.
I like the easy road and less complicated things. I've always been that way. So its kind of hard for me to get motivated to do the exercises. I know I need to but gosh, I'd like to breathe too!
In other, but related news, I'd like to gripe for a moment at the fact I've been waiting 17 months for transplant. 17! I read on Facebook today a young man listed Thursday and got the call today. 4 DAYS!!!! WHAT THE F!!!! I know my lungs aren't anymore important than his, and believe me I'm happy for him. But come on! I just want it to be my turn!!! The universe could atleast cut me some slack if it won't get me lungs anytime soon. Doesn't have to kick me while I'm already down.
WHEN WILL IT BE MY TURN?!?
I'm tiring of my life being on hold! I want to do things... real things. Not things to just pass the time while I wait. I want a baby, can't. I'd like to live on my own, can't. I'd like to go for a gosh darn hike, CAN'T! All my friends are doing stuff and moving forward.... I'm still sitting here.
AHHHHHHHHH!!!! I'm just frustrated. Mostly with myself. Wish I just felt... better. Until then I'll just keep waiting... what else can I do?
Breathe Easy
Oh, dear fellow CF'er, I am so sorry your at this horrible place in time. While I am not in your shoes, I will not pretend to know what exactly your experiencing but I want to encourage you to find something you really love doing that does require physical strain. When I have been ill and needed to get lots of rest, I volunteered to make signs for a local non-profit auction dinner, I learned to sew and a few other things that I just didn't have "time" to do when I was up and active. Maybe trying a new a hobby would help pass the time and help you forget (even for a minute) about your physical limitations.
ReplyDeleteHoping you get the call soon! Keep your chin up :)
Your day is coming. I know it is. I hate that you're so frustrated, but I know you'll hang in there, and your day will come. <3
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