Hi. I've had a really thoughtful, quiet, busy day. I like days like this. They are my best and favourite days (as far as the past 2 years goes) and yet I don't feel like I'm gaining ground really. Let me explain.
As I've already explained, my best days involve being busy. I sit on the couch as usual, but I get up every 5- 10 minutes for periods of 5-30 minutes. I cook, I clean, I shower, I take the dog out, I take pictures, make crafts, enter contests, make lists, make coffee, read a few pages of a book, brush my hair while dancing to music, open the window, take a trip out for window shopping, you get the idea. I feel active and stimulated, and my body feels at its best.
I've been trying something new to combat the pre-menstrual lung issues. I've been taking an advil every day for about 4 days, and will continue for one more week. As of tomorrow, I'm going to double my pulmocort for a week. Thats' it. So far it seems like it might just be working too. Either that or the increased indoor exercise is doing it. Or it might be a circular thing.. advil=more exercise indoors which makes me even less short of breath which = more exercise and so on. I think I've gotten lost on a tangent.
Anyways, so these days I tend to get a lot of minor things done. Booking eye tests, getting the car washed, eg. and it makes me feel useful. Sometimes, even a little growth happens if I read a good book, have a deep conversation with a friend or whatever. The point is, I'm okay with my life mostly. After so much thought about how scary it is to have a statistically low lifespan, and how sad I am to be finished with working, I do realize that at the end of the day, we all only have today and can only control our actions today.
I read this facebook group once about a CF patient who got a transplant and then made it a few years, and then passed away. She seemed really magnetic. I can't even remember how I found her page, and she was so pretty too. She had a boyfriend, a dog, a family. She worked. One of her nurses wrote a compelling little page about her on the facebook group. It spoke of her personality and positivity and charm. The point is, the nurse was given a change of perspective on lung transplant, and what it means regardless of how much extra time you get from it. I encourage you to read the story here: http://www.facebook.com/home.php?#!/topic.php?uid=2339377729&topic=2470
Now, I'm determined to live like her. However, there are certain aspects of life where it's a lot harder than simply "worrying wastes time, go enjoy yourself today". Certain things require planning. Certain things have a big impact on other people, and if I'm not there to clean up a mess I might make by initiating a big decision or project, I'm hesitant to start it. Lately this has been my thought process around: 1.) having a child, 2.) making a goal of someday getting out of this basement apartment of the house we share with my sisterinlaw and her son. Both of these things, had I not had CF (or even if I had 20% more lung function) would be hardcore dreams of mine and I wouldn't settle for anything less than accomplishing them. But here I sit, worrying about how those battles (because they would both be something that required a huge amount of fighting for) would work out if we encountered any bumps along the way (or worse). How would my support system deal with it? I realize that this is stuff I should be talking about with my loved ones, and I have. I just feel like I ask the questions with urgency.. like 'ok well if its a good idea, lets start now!!" and the responses are more vague, and seem like we are waiting for something miraculous to change.
I guess I just want to figure out what I can aim at in life (even if its something that would take 10 years), what I should fight for, and what's worth my energy without risking my health. I'm so used to moving forward, and I long for it again.
Michelle, remember one thing, you, like everyone else, deserves erything you wish for in life. You are right, you just have to plan, and talk to your 'support system'. But don't get caught up on the fact that you may have a shorter life span....the longer I live, the more likely it seems that life just keeps going, and one day you wake up and you have lived a long time. You have done so well so far, and this is the end for you of something very difficult and very hard. Post tx is all new. Not perfect may be, but all new, and it will re-vitalize you. Plan for those dreams honey, and certainly fight for them.
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