Got Spoons?

So as most of my friends, neighbors and Mom know by now, I've been doing a lot of online reading. Mostly blogs and message boards. Mostly about transplant experiences. I've seen multiple people's scars, learned of their struggles before transplant, wiped tears from my eyes as I read about their recovery, and had this strange mix of jealousy and eagerness as they talk about life after transplant. It's funny, the more I read about it and talk to people... the more I want it.

Even after reading about horrible experiences people have had during their recovery - bad hallucinations, extreme pain, early rejection battles, etc. - I want this. Even if it's just a month of easy breathing... it has to be better than where I'm at. Right now I live a life of waiting on the sidelines. I'm a spectator in my own life and I'm just sick of it. Which brings me to the "Spoon Theory." It's a concept that's been around for a while but was brought back to my attention after reading a fellow CFers blog. She brought her life into the theory and I thought I would do the same. For those not familiar with the theory, check here

For those who are lazy (tee hee), I'll sum it up quick. A girl with Lupus goes out to dinner with a friend who wants to know what it's like to have Lupus. Quickly the girl gathers all of the available spoons in the diner and hands them to her friend. She then explains that everything during the day that the friend did cost the friend a spoon. From showering to getting dressed to walking to her car to eating her dinner or even skipping a meal... each cost a spoon. By the end of the day, the friend was down to one spoon and began to realize that all parts of life is a planned choice.

So on to me. I've noticed over the last few years, the number of spoons that I start with in the morning has slowly declined. For arguments sake, I'm going to assign numbers... but who really knows :) When I was at my healthiest, I think I was about 15 years old. It was before the yeast, before the bad pneumonia which took so much, before I quit seriously dancing. I think at that point in my life I had about 20 spoons. Maybe what happened was instead of borrowing from "tomorrow", I borrowed them from 10 years in the future.... oh well...

But each year took more and more spoons away from me. And these weren't just "spent" spoons, these were "lost" spoons. I think in comparison, I have maybe 10 spoons now. Here's a small peak into a typical day for me...

• I get up in the morning (some days I get dressed, some days I take a shower. You can tell how well I'm feeling by these 2 things alone.), unhook from my machines (BiPAP, tube feeds, turn oxygen off... it's a small production) and I go down stairs. -1 spoon unless I shower and dress, then -3. But on average, it's just -1.
• Now I do a breathing treatment. While I know this helps me, it's one of the hardest things I do of the day. It's a conundrum. I need to cough so that I can clear my lungs and breathe better, but in order to clear them I cough so hard that I can't breathe. -2 spoons for having to prepare and do treatments.
  
• I eat lunch and try to make a decision on what to eat. If I did a good feed at night, I'm not hungry until late in the afternoon. If I did a smaller feed I'm hungrier earlier, but again... another spoon is lost to make the additional meal. It's a balancing act. So most days I don't eat breakfast or if I do, it's a yogurt cup. So there's another spoon. Unless it's a large or heavy meal... then it's -2. and with CF, they're always telling us to eat large and calorie dense food. Great, but the more full I am the harder it is for me to breathe, the larger the meal, the harder for me to finish. So, on average, -2 spoons for eating. I'm down to 5 spoons left and it's only about 3 in the afternoon.
• Sometimes I can take a nap and conserve energy, most of the time I lay around and watch bad TV reruns and wait for dinner. But let's not forget the afternoon breathing treatment. -1 spoon ( it's not as hard as the first one in the morning)
  
• The rest of my family gets home and it's time for dinner. They usually do all of the work - preparing the meal, setting the table, doing the dishes - and I just sit and watch and wait. -1 spoon for dinner.
• Then comes the sitting around the TV, sometimes sitting on the computer, very lazy , relaxing activities which allow me to conserve my energy for the rest of the night.
  
• When I'm tired, but not too tired, I finally make it up the stairs, and prepare my nightly machines. I pour formula for my tube feeding, I put fresh water into my oxygen humidifier, more water goes into my BiPAP machine, do my nightly pills, and my final breathing treatment. - 2 spoons. This leaves me with one spoons for the night... just in case I have a coughing fit in the middle of the night, or a bout of insomnia. Let's not forget the mid-night bathroom run which requires unhooking from my machines and then re-hooking when I get back to bed. Heaven forbid that more than one of those things happen!
  

Just like the girls with Lupus, some days I may wake up feeling good. My chest doesn't feel so heavy, I'm not so congested. I slept great the night before and I have the strength to strap on the O2 and get my butt out into the world of the living. I have "extra" spoons that day that don't cost me spoons from tomorrow. There are other days I wake up and I don't have as many spoons. Those days I don't eat as well and I require a lot more care. I need someone to set up my night machines, I need someone to prepare my meals. But I'm lucky. I don't and WON'T need someone to bathe me or dress me. I may have given up a lot during my transplant journey, but won't sick to the point of being an invalid. I have to keep moving, I need to keep moving. If I can push myself now when I can't breathe, pushing myself when it feels like I've been run over with semi, but taking deep beautiful breaths, should be cake... right?