June 6, 2011
Limbo has become a little boring as of late, every week is devoted to what seems like treatment-filled days and physio. I've transferred to a physio/rehab place closer to home, so that has helped free up a little bit of time. I was feeling great for two weeks, so I developed the hopeful/cocky notion that I would be able to go on 'hold' on the transplant list (exactly what it sounds like, hitting the pause button), and enjoy the bliss that is an unleashed summer. It was a Utopian idea that is starting to get smaller and smaller in the rear view mirror as my lungs take over the wheel and I'm simply a passenger. Sound depressing? Well, it kind of is... but it's not forever.
This weekend, and let's face it most weekends since I've escaped the hospital confines, I didn't really feel like going out. I've recently realized that socializing takes a lot of effort and energy, and once I have one day of it I'm typically down for the count for a few days. So this weekend I recharged and enjoyed my fat time on the couch... watching trash TV and "eating" junk, of course I also enjoyed this lovely weather we've been having and rotated between TV time and reading on the deck. It sounds lonely, but I actually enjoyed the time to myself, my own company is pretty good and I'm a low-maintence kinda gal. The only real disappointment came when the weekend wrapped up and rather than feeling rejuvenated (as I should have) I felt more tired than ever, nearly falling asleep over my dinner at 8 and eventually passing out on my bed around 10 (I went upstairs to grab something, but somehow was sucked in my the bed vortex). I'd been short of breath all weekend, with my SATs hovering around the mid to low 80's at first from attempting my own laundry, then just from walking from room to room--very frustrating--life really is a marathon!
So that, coupled with my insane lung pain today, equates to a high probability that I'm getting sick again... I only hope that I can avoid IVs and the hospital until after June 20th (my graduation). Maybe I can be that annoying backseat driver to these reckless driving lungs and we'll end up in a place I want to be... TO BE CONTINUED.
4 years ago
Booo!!! I hope you have a nice long chat with your lungs and let them know that you will keep them posted when your available!!! lol...in all seriousness, I sure hope your not getting sick and land yourself in hospital. Thinking of you. xo
oy...i think the lungs are screaming for a break...falling asleep mid meal is never a good sign.
Breathing is hard work, when you have so little lungs to be breathing with!! Don't feel badly about being so tired, just sleep, eat, do whatever to pass this time. Luckily this stage of life you are just passing through. The expectation that you should go out, or socialize is crazy. Little bits at a time. But I was the same way, I look back and think, I should just have slept it away that time...not worried about getting out summer or no summer. You will have many summers to run around and enjoy. But I get it hon, I get it ;)
Thanks for the words ladies! :)