A few of my online CF friends have "full time patient" or "works at CF" listed as their careers on facebook. I used to kind of snicker when I saw that. Like, seriously, I've been the patient for years and I still manage to have a very full and productive life that does not revolve around CF - spare me the drama.
It's the same for some healthy people who may see "full time mom" listed as a career and think, seriously? That's all that defines you now? That is your life work?
But now I understand. Because CF really and truly has become my full time job. It takes me a minimum of 2 hours to get out of the house to do anything in the morning - and I'm often late to everything these days. I am trying to get a fourth vest treatment in every day. On the days I have pulmonary rehab (Tuesday and Thursday every week), it is amazing if I can get anything else done that day...doubly amazing if I have the energy to BOTH go to the grocery store and cook dinner. I used to run "errands" but now it's more like "errand."
But my home is still my castle. And even though things may pile up for a couple of days, I still manage to keep things looking decent, especially for visitors. Really, I have to or I would go insane.
And I have so many appointments... I try to give myself Mondays off, a day to catch up on phone calls and house work. For example (and this past week was pretty light) Wednesday, had I not started on IVs, I was going to see my shrink and acupuncturist. Friday, I had both Tobra levels and a gynecology appointment at the same time! (first time for everything) Then in the afternoon, I drove to Chapel Hill to have a Doppler scan to make sure the pain in my arm wasn't another blood clot (it was not - thank god!!)
OxiginationSometimes I try to step back and see how much my life has changed in the last three months. Coincidentally, this is the amount of time I have been on short-term disability from work. I SO wished the extra time dedicated to my health would have me in better, not worse, shape than when this all started. But sadly that's not the case.
Probably the most obvious changes are a constant nasty cough and the need to wear oxygen more and more of the time. Well, and my depleted energy, but that's not always noticeable to people if I'm acting like my normal bubbly self. I am trying to embrace this new roll, but it isn't always easy. And I've learned pretty quickly that I have to let a lot of things go - whether it be house work, a non-essential errand, or that thing I've really really been wanting to get done but just haven't had the time or energy.
My biggest challenge right now is the mental game, though. I continue to research everything and visualize the possibilities that lie ahead for me - both good and bad. I want to try to prepare myself as much as possible. I know that things are going to get much worse still, and I want to be able to accept things as they happen.
I am aware of all the scary possibilities, but that doesn't mean that they have to happen to me, or, if they do, that they have to be scary. Not sure if that makes sense. I am training my inner Zen master.