My sense of isolation has increased over the years as this disease has worsened. During the past three months and the hemoptysis surprise parties I’ve had, I’ve felt more isolated. I have friends, but it’s hard to plan getting together. At times, when my lungs have gone south, it’s an effort to speak. Or, there are the times I just don’t feel well, which have increased. It’s harder to make an effort to hang out, and easier to stay home.
Then add Los Angeles to the equation. It may seem strange to say that this expansive city of millions can feel isolating, but it can and does. Everything is spread out here, including my friends. And what may be a short drive in distance can take forever thanks to the worst traffic in the country. Visits across town take planning. You can’t just drop in on someone. Add to that the fact everyone is busier these days making ends meet and managing life. Even my healthy friends are tired.
The daily management of CF and time spent doing treatments each day interferes with going out or having friends over. I laugh when I fill out CF “quality of life” surveys. I have a great life, but the question asking if CF gets in the way of my doing stuff makes me want to ram my head against a wall. I need an answer choice of “F**k yes, it gets in my way. Are you kidding?” Clearly, someone with CF didn’t write that question because they’d already know the answer is yes. Okay, maybe not for all CFers. I don’t want to make that assumption. I hope it doesn’t for everyone. Just place a permanent check mark in my survey, please.
So, it’s Christmastime and I’m lucky. But I would have loved to have had a holiday party this season, which I say we’re going to do each year, but we didn’t yet again. Life with CF got in the way. The blood came after Thanksgiving and it was “all hands on deck” mode to maintain life as we know it. Now I’m on blood watch, as the streaks have returned and it’s anyone’s guess when my lung pops again. Can you say “fourth embolization coming up?”
Life is good. Yet, CF can make it feel like normal life is going on while I sit at the computer with a nebulizer in my mouth. That’s the “me time” I’d happily exchange for “hanging out with friends” time.
I thought I was the only one with the isolation problem. Although I am only a mom that takes care of a kid with cf, I still feel that societal separation daily. Just getting out of the house is so incredibly difficult trying to get treatments, tube feedings, medications etc done to make any outing. I really hate this disease. My daughter also has down syndrome which adds a whole new dimension to it.
Ok, enough whining I guess. We are not trying to make this about us. I just wanted to say I feel your pain.
As a fellow parent, I cannot begin to imagine what you go through raising your daughter and the complex challenges you face everyday. I hate the disease, too, and even more now that I know a small piece of your story. I don’t think you’re whining. Feel free to express yourself here anytime.
I wish you and your family the best of holidays and a Happy New Year. Thank you for the visit and comment.
STOP IT! you are making me cry. (which is not too hard to do at the holidays.)
Anyway, you are very sweet.
I love your blog btw.
Just want to wish you a blood-free Christmas and New Years. I’ll keep my hopes high that you will be with your wife and daughter for both.
Thank you. I hope I do too. I also wish you and your family a wonderful holiday and Happy New Year.
I too have lots of friends, but finding the energy to go hang out and be social is very tuff. I’m on week 4 of IV’s and very happy to be home and able have people over but going and seeing anybody is hard(and having to time that with IV’s). It is hard CF is a bitch. I have only had 1 big bleed, but I’m always worried about that also. But here is something to cheer you up.