This is exactly how I feel these days...
I am trying to live my life this summer. Live a life, not a CF life. I was doing pretty well for a few months, lung wise. Well as "good" as you can be on 23% lung capacity. But my weight took a serious dive. I was just doing so much that my body couldn't keep up. I went from 98lbs mid May to 85lbs 2nd weekend in August. Not good, not good at all. So off to the hospital I went. Not so much for my lungs, they were staying stable, but for "failure to thrive."
The transplant program has a strict policy about maintaining a 17% BMI or higher. That is about 88lbs for me. So once I dropped below that % I get "deactivated" on the list until my weight goes back up. Talk about a shot in the face. So I ate and ate and ate and threw up and ate and ate and threw up some more. I got my weight back up to 98lbs in 2 weeks! Back on the "active" list I went. I was very glad to be back on the list.
But I feel I'm in the same damn boat again! I won't to do things, not sit around and just wait for lungs to show up. Just waiting, that's not living life. I'm not even asking to do a lot. I just wish I could go out with friends for a weekend and not need a week to recover from it. Or be able to walk my dog around the neighborhood and not be exhausted for the rest of the day. Or walk up a flight of stairs and not need to sit at the top, cough my brains and sometimes lunch out. Or that I could eat a meal and the calories in it just STAY ON MY BODY! Is it too much to ask for some kind of normalcy??
Don't get me wrong, I do love my life and wouldn't trade it in, ever. But sometimes I just wish I wasn't being "tested" all the time. I know, I know, the hard parts of life make you stronger and I do believe that. But I'm tired of being "strong." I wasn't raised to have a pity party for myself. So that's not me. I love my family and they are very supportive. Sometimes their support feels like nagging and drives me bananas. I know they want the best for me, I know they want me to be successful. I feel like I'm giving 100% and they are only seeing 50. It just doesn't seem fair sometimes. And yes, I know, life's not fair.
I'm dreading the colder weather and winter all together. Last winter was pretty hard, lots of hospital stays. And I think this winter is going to be just as bad if not worse. I try not to let my cystic fibrosis bug me. And it usually doesn't. But lately it just feels like I can't win. If I keep going down this road I'll either be in the hospital ALL the time or stuck in my house ALL the time.
I need to find the energy somewhere to keep doing what I'm doing. But it is getting hard. I'm burnt.