Helpless

There is no limit to the ways of mulling about CF when you have it. Or should I say.. at low lung function. At least for me there isn't (hence, the birth of this blog). There's so many ways that things can not feel right, or fair, and you just sit there feeling helpless until you come back around to realizing that despite it all you must keep on with everything you can possibly do.



A couple of days ago, as I continued to fulfil my new regimen of exercise, extra physio, cooking more, etc etc.. Everything I've been aiming at.... I coughed up a bunch of blood. This isn't the biggest deal when it comes to CF, but for me, this was only maybe my 4th time ever doing this. Probably 3rd or 2nd with the amount I brought up. I am still lost with how to react to this. The doc's warn against large volumes or repeated sessions as the "danger" to worry about and address.. but I always feel like I'm doing something wrong when it happens. In this case, I was thinking too much physio(interesting how when I didnt do physio at all--almost my whole youth--I never got hemoptysis).. too much irritation. So what do I do, stop? How can I know whether the lung tissue damage that is resulting in the bleeding is more or less harmful than the mucus buildup ill create by halting my therapy for hours/days/a week? I feel so helpless.



Then there's the report that came in the mail today. I had to apply for CPP when I went on work disability. Dr.T just sent me her part of the process and I read it through. I always am in awe when I read my chart or anything about my medical history. It always comes from how I grew up never feeling that such great odds could be against my living a full life. I keep wondering when my awe will end and I will just see myself as someone who must climb impossible mountains to be called a senior. Maybe I never will believe it. Anyways, my chart had one sentence that haunted me this afternoon despite there being nothing suprising in the facts of it. "Median survival when FEV1 <30% predicted is 2 years. Michelle is at 26%"

It makes me wonder what it IS like to be elderly. To know that for certain you will not have more than 'x' years to live. Or does that ever really happen? People who live relatively disease-free would have years of that invincible bliss and maybe it sets in so well that age is no challenge mentally. Who knows. All I know.. is I see those facts written so plainly and for a moment, I don't know what I'm really fighting for. I want to be here as long as I can. I want to be with my husband for so long and have a family and do it all, but if its less that we're allowed.. is it ok to fight so hard when I could spend the fighting hours just enjoying? I feel like this is a terrible post, but every so often, I slip and land in this depressive mental zone about it. Some times I really wish I was dumber and just did what I had to do, and hoped how I was told to hope and that was it.

End of Rant.