Friday, April 22, 2011

Saying "When"

The hardest part for any CFer is knowing when to say 'when'. By that I mean when to say I can't do the things I love because they take too much out of me or when to say when before CF gets to the point that it will take too much out of you. I have been there. I have been in the spot, especially when it comes to work, that I put work before I put myself and I refused to believe that there was any corelation between working too hard and not feeling well. There is this ability to push and push and push and not acknowledge that things have been slipping away a little at a time. First it's the getting out of bed, you used to love early mornings and at some point the idea of rolling out and getting the day started sounds as about as exciting as a poke in the eyeball with a sharp stick. But you push through, then it moves to trying to get things done around the house, the dishes stare at you and you stare back cursing food and the necessity to eat under your breathe - do yourself you stupid dishes. Then you find pulling weeds that the summer before wasn't super easy has become harder than the year before and you just say it must be a bad day. Excuses roll out of your head like a red carpet at a hollywood event. There is always an excuse for why things become harder but at no point are you willing to say, it's CF, it is taking hold and I am heading down a path I don't want to. You think that you are going to wake up one day and it will be better, it was all just a cold or something settled on your chest that just has to pass, because it used to do that - but why isn't it doing it anymore?

I worked my butt off for six years, going to work with bleeding lungs, even a collapsed lung and tried to get back to work as soon as I could after an absence, which never were very long. I was determined to live as much of a normal life as CF would allow me but also pushing when I shouldn't have. But then you also stop and say, what is the determining factor in how hard we push, in the end this disease is going to take us down and our choices are to live it the fullest as much as we can, or hold onto what we have by not doing the things that we know will harm us. It isn't easy always telling people no you can't do something, but when you know that you will likely feel like shit for two days or two weeks after you do something or attend something that is a big decision.

I don't think most cystics see the reality of what has happened until it is too late and yet not all cystics are the same, some will live a long life with their own lungs and have families - because that's just how different this disease can be. But for those who struggle for years with collapsed lungs, infections, and bleeding pulmonary arteries, you learn to make concessions.

After six years of pushing I am ready to give up the one thing that likely helped put me in this position I am in. I am not saying it harshly or that I have regrets, because I don't. I am pleased with what I did, and where I brought design at work but I am ready to conceed, I no longer want that stress, I no longer want it to take from me because there isn't much more of me left to give and what little I do have I would like to reserve.

As CF takes things away, it also gives gives insight. Insight that life isn't the job, it's about the sun filtered through the tree casting a shadow on the house, or the flowers stretching and unfurling after a long fierce winter, it's about the dog sitting on your lap as you type because he loves you more than his rawhide or his own bed, or the roof over your head, or the soft couch under you. If only we could make money on those things we would be more rich than any job we could ever have.

I am here another day and that is enough for me.

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